This chapter contains sections titled: General Assessments of Assisted Reproduction Pre‐birth Testing Conclusion References Further reading.

Objective : Pre-implantation genetic diagnosis (PGD) has been utilized by assisted reproductive technology (ART) to genetically screen embryos before placement in the uterus. However, many objections have been raised against the genetic screening of embryos, giving the practice an uncertain ethical, legal, and social status. Our aim was, therefore, to survey the possible presence and compliance to any legislation for PGD in the existing 60 in vitro fertilization (IVF) centres in the Gulf Cooperative Council (GCC) countries as well as (...) the availability of such a technological service. Methods : The study was performed in the department of biochemistry at King Faisal University between the periods Mar 2006 to Nov 2007. A questionnaire, in the form of a table, was sent to responsible persons of all 60 IVF centres and health authorities in the GCC countries. The collected data about the regulations and guidelines for the PGD program was analyzed using SPSS software package version 12.0 and the level of significance was set at P Results: 18 respondents, 16 IVF centres and 2 health authorities (26.87% of total) participated in the survey. The PGD techniques, mainly FISH analyses, were practiced in three centres in Saudi Arabia and one centre in the UAE. The major provider of PGD was King Faisal Specialist Hospital and Research Centre in Riyadh where more than 300 PGD tests had been performed. Whilst some regulations and guidelines have been introduced to IVF centres in all GCC countries, their implementations were left to the discretion of the treating centre. Conclusions : PGD services in the GCC countries were under-utilized due to the high cost of tests, the sophisticated technology involved and the poor returns of the investment. As a result of some deficiencies in the legislations which regulated PGD, the medical teams involved often faced difficulties on what rights to exercise in various PGD cases. (shrink)

The aim of this study is an analysis of the possible adaptive consequences of delivery of low birth weight infants. We attempt to reveal the cost and benefit components of bearing small children, estimate the chance of the infants’ survival, and calculate the mothers’ reproductive success. According to life-history theory, under certain circumstances mothers can enhance their lifetime fitness by lowering the rate of investment in an infant and/or enhancing the rate of subsequent births. We assume that living (...) in a risky environment and giving birth to a small infant may involve a shift from qualitative to quantitative production of offspring. Given high infant mortality rates, parents will have a reproductive interest in producing a relatively large number of children with a smaller amount of prenatal investment. This hypothesis was tested among 650 Gypsy and 717 non-Gypsy Hungarian mothers. Our study has revealed that 23.8% of the Gypsy mothers had low birth weight (<2,500 g) children, whose mortality rate is very high. These mothers also had more spontaneous abortions and stillbirths than those with normal weight children. As a possible response to these reproductive failures, they shortened birth spacing, gaining 2–4 years across their reproductive lifespan for having additional children. Because of the relatively short interbirth intervals, by the end of their fertility period, Gypsy mothers with one or two low birth weight infants have significantly more children than their ethnic Hungarian counterparts. They appear to compensate for handicaps associated with low birth weights by having a larger number of closely spaced children following the birth of one or more infants with a reduced probability of survival. The possible alternative explanations are discussed, and the long-term reproductive benefits are estimated for both ethnic groups. (shrink)

Objective: To explore the accounts and perspectives of junior doctors who were offered an HIV test by their employing National Health Service (NHS) trust and discuss ethical issues posed by this new policy. Design: Qualitative in-depth interview study. Setting: 4 NHS hospital trusts. Participants: 24 junior doctors who had been offered an HIV test as part of their pre-employment occupational health checks. Results: The manner in which HIV tests were offered to junior doctors varied both between and within the (...) NHS trusts. Overall, the doctors were highly critical of the way the HIV test was offered. Recurrent themes surrounding a lack of discussion and information regarding the indications for the test and implications of a positive result influenced the the doctors’ perception of their experiences. As a consequence of the shortcomings of how the test was offered, most of the doctors held the misperception that HIV testing was mandatory and many felt unable to decline the test. The majority of doctors referred to patient protection as adequate justification for being offered an HIV test. Conclusions: Junior doctors offered an HIV test under new Department of Health occupational health guidance were disparaging about how the test was offered. The findings of this study affect thousands of junior doctors in the UK, and the impact of these results is extensive. Participants’ suggestions regarding how the process of offering an HIV test can be improved are discussed and ethical issues regarding the new Department of Health policy are highlighted. (shrink)

Empathy and altruistic behavior are more crucial abilities for pre-service teachers to possess when compared with other study fields. The relationship between empathy and altruistic behavior in Chinese pre-service teachers and their underlying mechanisms, however, has received relatively little attention in the literature. Therefore, the goal of the current study was to examine the links between study fields, self-control, emotional empathy, and altruistic preferences among undergraduates and graduates in five Chinese universities with the Interpersonal Reactivity Index-C Questionnaire, the (...) Self-Control Scale, and the Chinese Self-Report Altruism Scale tests. The results showed a significant difference between pre-service and non-pre-service teachers in empathic concern and self-control. Furthermore, empathic concern and altruistic behavior tendency of pre-service teachers were significantly higher than those of non-pre-service teachers. Moreover, mediation analyses indicated that empathic concern partially mediated the relationship between study fields and altruistic tendency. Moderated mediation analysis further revealed that self-control buffered the relation between empathic concern and altruistic behavior tendency. These results demonstrate that altruistic tendency of pre-service teachers is influenced by empathic concern and self-control. (shrink)

Innovation is a key driver of care provision in assisted reproductive technologies (ART). ART providers offer a range of add‐on interventions, aiming to augment standard in vitro fertilization protocols and improve the chances of a live birth. Particularly in the context of commercial provision, an ever‐increasing array of add‐ons are marketed to ART patients, even when evidence to support them is equivocal. A defining feature of ART is hope—hope that a cycle will lead to a baby or that another (...) test or intervention will make a difference. Yet such hope also leaves ART patients vulnerable in a variety of ways. This article argues that previous attempts to safeguard ART patients have neglected how the use of add‐ons in commercial ART can exploit patients’ hopes. Commercial providers of ART should provide add‐ons only free of charge, under a suitable research protocol. (shrink)

Background: Preimplantation genetic testing is used in In Vitro Fertilization to identify genetic abnormalities in embryos. Genetically defective embryos are not transferred to the uterus, resulting in a higher percentage of healthy babies born. Aim: to study the ethical problems of using preimplantation genetic testing in Orthodox Christian discourse. Materials and methods: An analysis of the provisions of Orthodox ethics, expressed in the church resolutions of the Russian Orthodox Church and the general church teaching on morality, was carried (...) out in the context of their application for the biotic analysis of preimplantation genetic testing. Results: Despite the fact that PGT can have positive implications for the choice of the mode of delivery later on and for the earliest possible initiation of intrauterine treatment, this practice meets with certain ethical objections in Orthodox Christian discourse. Identified genetic abnormalities of embryos in PGT encourage women to refuse to transfer the "diseased" embryo, leading ultimately to its death. The absence of intrauterine interaction between a mother and an embryo makes such a choice easily feasible. Given that Orthodox Christianity affirms the beginning of human life from the moment of conception, refusing to become pregnant with a "sick embryo" would be tantamount to its murder. In addition, among the ethical problems of PGT is the possibility of the use thereof for the embryo selection according to sex or other chosen characteristics, which also belongs to immoral actions in Orthodox Christianity. Conclusion: Thus, the possibility for Orthodox couples to participate in assisted reproductive technology must exclude the use of pre-implantation genetic testing, which is ethically unacceptable within Orthodox Christianity. The couple starting IVF should be ready to give birth and bring up such a child, who will be the result of the fertilization in vitro. (shrink)

Probably the main purpose of reproductive technologies is to enable people who choose to do so to avoid the birth of a baby with a disabling condition. However the conditions women want information about and the ‘price’ they are willing to pay for obtaining that information vary enormously. Individual women have to arrive at their own prenatal testing choices by ‘trading off’ means and ends in order to resolve the dilemmas facing them. We know very little about how (...) individuals make these trade-offs, so it is difficult to predict how new technologies will affect their choices and preferences. Uptake decisions can be expected to change, especially in the group of women who now are put off by some aspect of the current screening approach, where the avoidance of miscarriage risk may have provided a kind of ‘psychological shelter’, protecting a lot of people from having to make other decisions. Technologies such as Pre-implantation Genetic Diagnosis may remove a second ‘psychological shelter’ because they offer the means of avoiding the birth of an affected child without terminating a pregnancy. Even if new technologies will make some decisions easier in terms of their cognitive demands, they will also create new dilemmas and decision making will not necessarily become less stressful in emotional terms. Key challenges concern information and decision-making. (shrink)

In spite of these efforts in the 1920s and 1930s to initiate ongoing research on contraception, the subject of birth control remained a problem of concern primarily to the social activist rather than to the research scientist or practicing physician.80 In the 1930s, as has been shown, American scientists turned to the study of other aspects of reproductive physiology, while American physicians, anxious to eliminate the moral and medical dangers of contraception, only reluctantly accepted birth control as falling within (...) their professional domain.As a result, the problem of cheap, effective, and safe contraception was not solved by these earliest attempts. Consideration of the subject was initiated afresh by private philanthropy after World War II, sparked by a new wave of interest in population studies.81 Summarizing such efforts to support research in the reproductive sciences, a recent Ford Foundation study has noted: “To initiate and sustain serious research in the reproductive sciences has required for more than half a century concerted effort by interested individuals and private organizations, mainly from outside the mainstreams of the biomedical research community.”82The early laboratory research on chemical contraception described in this paper was but one important outcome of the concerted effort made by reformers in the 1920s to eliminate a variety of social problems thought to derive from excessive fertility. Scientific arguments and expertise were employed to advocate reform as well as to define the appropriate solution to such social problems. Scientists were recruited as advocates for the movement, but they were also employed as researchers in laboratory investigations sponsored by these same reformers.Sponsors of these early laboratory studies noted the difficulty of obtaining first-class investigators.83 The routine analyses necessary for such research, as well as the traditional scientific aversion to applied problems, provide only a partial explanation for this response. The real difficulty lay in recruiting investigators to a field that had previously been taboo. Once opened up — first as socially relevant, and finally as scientifically sound — there was much interest in this area, and the appeal to researchers of the scientific issues surrounding fertility and reproduction soon surpassed that of the reforming value of birth control.A survey of the kinds of experimental investigations sponsored by birth control advocates indicates the range of physiological problems explored by contraceptive research. The most definitive work was done on the efficacy and safety of spermicides, but the potential of other contraceptive methods was also examined. Investigators attempted to develop spermatoxins that would effectively immunize women against sperm, and they also tried to elucidate the mechanism of hormonal control of reproduction. In fact, speculations about the possible hormonal manipulation of fertility were expressed at the Seventh International Birth Control Conference held in Zurich in 1930.84In the 1920s, clinical studies were undertaken to assess the effectiveness of the various birth control methods. Laboratory investigators complemented this work by screening spermicides for safety and testing for their ability to kill sperm. There were a variety of birth control preparations on the market, but no one really knew whether these were effective or even safe.85 Although the physiology of other major organ systems was well advanced, the scientific study of reproductive physiology and contraceptive technology was clearly in its infancy in this period. Routine analyses simply could not be conducted, because the fundamental research establishing baselines had not yet been done. Scientists used this fact to redirect attention to basic research on reproduction.Laboratory research on contraception indicated important unexplored areas for physiological investigation. Social activists, who had encouraged prominent scientists to become interested in both the social value and the genetic implications of birth control, found these investigators revising the goals of their research. The biologists had formed their own network and had begun to seek out funding, reformulating the justification for sponsorship of further investigations. The eugenic motivations underlying these studies, which had initially made them theoretically attractive to biologists, were gradually eroded. Concern with “human evolution” ceded its place to interest in physiological mechanisms. Crew and others began to note that the use of biological theory to justify essentially political decisions had serious limitations. Biologists had become uncomfortable with those very arguments which had originally captured their interest. Recognition of the potential political abuse wrought by applying scientific principles to society was expressed by Crew just one year after the Zurich meeting. Referring to previous assessments of the role of sex in reproduction, he generalized: “In the past the biologist has justified feudalism, Manchester Liberalism, socialism and every other type of social organization and political programme by reference to selected biological phenomena.”86 By 1932 Crew had also begun to question the biological logic of regulated breeding, and had made it clear to his American sponsor that there was no simple correspondence between the practice of birth control and the genetic improvement of the human race.87Biologists further began to recognize, however, that although the hopeful genetic solution to human problems was probably an illusion, contraception still remained one tangible means to alleviate, human misery. Some laboratory scientists, like Crew, acknowledged the applicability of their own particular skills to this problem. For a few brief years, social needs and scientific goals were mutually supportive and closely intertwined. But as laboratory researchers gained interest in the study of reproduction and established their own priorities in this field, they temporarily withdrew from the arena of debate over birth control as an important mechanism for social reform.With the rise of Hitler, the genetic arguments for birth control rapidly lost their appeal. But by that time the scientific problem of how to achieve effective contraception had entered the professional consciousness. Both physicians and scientists began to be aware of birth control as a subject within their domain of expertise, although outside the principal focus of their research. Scientific discussion of birth control permanently altered from a question of justification to a problem of method: How could one achieve reliable and safe contraception? This had been Sanger's and Dickinson's goal from the beginning. Laboratory scientists had indeed been persuaded to undertake this work; this research had in turn affected biologists' perceptions of the whole field of reproductive physiology, encouraging further study of reproductive mechanisms. The promise of new knowledge provided for continued funding of this research, despite the caution by scientists that the social benefits would not be as immediate or as far-reaching as advocates and they themselves had first argued.The activities of birth control activists and their supporting agencies, and the financial backing of private contributors and foundations, notably the Rockefeller philanthropies, provided an important new stimulus to the development of research on the biology of reproduction in the late 1920s and early 1930s. Biologists were able to claim an enlarged realm of issues for scientific study through their activities as advocates and as investigators for the birth control movement. At the same time, they promised as-yet-undiscovered possibilities for regulating human reproduction once its physiology was understood. The knowledge and control that they promised lay in understanding the whole reproductive cycle — not merely in evaluating the toxic effects of presumptive spermicides.Chemical spermicides never summoned the interest of scientists as the contraceptive pill was to do, yet that research did reinforce the widespread perceptions of scientific research as essential to social reform. Spermicide investigations focused research efforts in reproductive biology by challenging traditional taboos, defining problems for further study, and providing laboratory investigators the opportunity to assert the social and scientific value of their own skills. Crew echoed this attitude as he observed in 1934:Man has turned from the adventurous conquest of his environment to the conquest of himself. To-day is the day of biological invention, eagerly used for the control of the undesirable and the unwanted. Sex and reproduction are no longer hedged around by myth and taboo; they are no longer accepted as mysteries that defy understanding. They are matters inviting examination and explanation; they are regarded as expressions of physico-chemical forces, the nature of which is to be displayed. It is accepted that when knowledge is sufficient, control will be absolute, and, though knowledge is not yet sufficient, readers... must be persuaded to the view that this will not always be so.88The synergism between reproductive biology and social needs has been temporary and sporadic, but recurring, since the 1920s. Scientific research programs have clearly been influenced by issues raised by public debate. Nevertheless, reproductive biologists have continued to assert their own professional goals. For the most part, they have rejected problems without inherent scientific interest and have spurned applied research except as it has had a direct bearing on current research themes. This attitude, apparent among American and British investigators in the 1930s, created the intellectual context for the invention and acceptance of the technically sophisticated oral contraceptive pill. It did not foster the production and improvement of the simple, safe, effective, and cheap vaginal contraceptive desired by early birth control advocates. (shrink)

Traditionally, two main rationales for the provision of prenatal testing and screening are identified: the expansion of women’s reproductive choices and the reduction of the burden of disease on society. With the number of prenatal tests available and the increasing potential for their widespread use, it is necessary to examine whether the reproductive autonomy model remains useful in upholding the autonomy of pregnant women or whether it allows public health considerations and even eugenic aims to be smuggled (...) in under the smokescreen of autonomy. In this article I argue that if we are serious about upholding women’s autonomy in the context of prenatal testing, what is needed is a model based on a more robust conception of reproductive autonomy, such as the one defended by Josephine Johnston and Rachel Zacharias as ‘reproductive autonomy worth having’. While Johnston and Zacharias put forward a basic outline of this conception, I apply it to the specific case of prenatal testing and show how it responds to objections levelled against the reproductive autonomy model. I argue that adopting this kind of conception is necessary to avoid fundamental challenges to women’s autonomy when it comes to prenatal screening and testing. (shrink)

In 1992, the United States Supreme Court, in Planned Parenthood of Southeastern Pennsylvania v. Casey, upheld the ruling in Roe v. Wade, namely that women have a right “to choose to have an abortion before viability and to obtain it without undue interference from the State.”1 However, since this ruling, some states have imposed regulations that greatly limit this right by restricting access. Texas is a recent example of this. Two proposed restrictions in House Bill 2, which will be discussed (...) in detail below, will force all but eight clinics that are located in metropolitan areas to shut down. The U.S. Supreme Court put the proposed restrictions on hold in October 2014, allowing several clinics to remain open while the restrictions are being appealed in the U.S. Court of Appeals for the Fifth Circuit. If the restrictions are passed, however, those clinics will be forced to shut down and, as a result, many women in Texas will be required to travel more than 100 miles in order to access a safe and legal abortion. Much of the focus of these restrictions has been on women and rightly so. However, I want to turn the attention to physicians. The requirements exacerbate unfair treatment of abortion providers compared with other physicians. Abortion providers face threats from the public—some of which turn into violent attacks—and they are often ostracized by their fellow medical practitioners. There are so few abortion providers to begin with and the proposed requirements limit these physicians’ opportunities to practice the branch of medicine of their choosing. Although the HB 2 requirements may not result in an unconstitutional undue burden on physicians, the challenges created by the bill limit physicians’ abilities to provide abortions. As a result of these limits, HB 2 creates an unconstitutional undue burden for women seeking abortions by creating barriers directed at abortion providers and clinic staff who are willing and able to provide abortions. The first of the two controversial HB 2 requirements is the admitting privileges requirement: “A physician performing or inducing an abortion must, on the date the abortion is performed or induced, have active admitting privileges at a hospital that is located not further than 30 miles from the location at which the abortion is performed or induced.”2 The second requirement is the ambulatory surgical center requirement: “The minimum standards for an abortion facility must be equivalent to the minimum standards adopted under [Texas Health & Safety Code] [...] for ambulatory surgical centres.”3 In order to meet these state-mandated obligations, some abortion clinics would have to spend more than $1 million in upgrades if they wish to remain open. The District Court decided that the ambulatory surgical center requirement places an unconstitutional undue burden on women, and that the two requirements together place an undue burden on women in Texas and especially in the Rio Grande Valley where the nearest clinic is a couple hundred miles away.4 Later, the U.S. Court of Appeals for the Fifth Circuit reversed the District Court’s decision and argued, “the admitting privileges requirement is constitutional on its face.”5 While the regulations are being appealed, the Supreme Court granted a stay of injunction, allowing about twelve abortion clinics to reopen until a final decision regarding the regulations is made. The District Court ruled that the purpose of the two regulations was to create a substantial obstacle for women seeking abortions in Texas. While the defendants argued that the regulations were designed to make abortions safer and reduce risk, the Court decided that this was not the case. An abortion, especially a first-term abortion, is a very safe procedure and is safer than many other routine surgical procedures. As stated in Planned Parenthood v. Casey, “Unnecessary health regulations that have the purpose or effect of presenting a substantial obstacle to a woman seeking an abortion impose an undue burden on the right.”6 The undue burden in this case is imposed, not through restricting women’s access directly, but by restricting physicians’ freedom to perform abortions. The admitting privileges requirement has reduced the number of physicians who can perform abortions and the ambulatory surgical center requirement has reduced the number of clinics where abortions can be performed. The American Medical Association states, “[t]he Principles of Medical Ethics of the AMA do not prohibit a physician from performing an abortion in accordance with good medical practice and under circumstances that do not violate the law.”7 This means that physicians are not required to perform abortions, except in emergency situations, but can as long as the procedure is done safely and does not violate the law. The new Texas regulations, however, are so restrictive that few abortion providers, limited to only four urban areas, can legally perform abortions. Physicians do not have an absolute right to perform abortions as opposed to women who have an absolute right to have access to an abortion. Physicians do face many challenges that other professionals face in terms of obtaining qualifications and finding work. Abortion providers, however, face challenges that most other physicians do not. The restrictions imposed by these regulations exacerbate unfair treatment toward abortion providers and place further obstacles in their path in terms of providing the service they want and are qualified to provide. Both abortion clinics and abortion providers are being treated differently from other medical clinics and physicians. For instance, “grandfathering of existing facilities and the granting of waivers from specific requirements is prohibited for abortion providers, although other types of ambulatory surgical facilities are frequently granted waivers or are grandfathered.”8 Many abortion clinics cannot afford the necessary upgrades. Furthermore, it is extremely expensive to open a brand new clinic that complies with the ambulatory surgical center requirements. Being grandfathered in would be the only option available to abortion clinics that cannot afford the upgrade. However, unfair treatment of abortion clinics and providers is preventing those clinics from being grandfathered into the new system. As a result, many abortion clinics may be forced to close. Admitting privileges are proving difficult or impossible for physicians both to obtain and, for those who have already been granted privileges, to keep. Dr. Sherwood Lynn, an obstetrician-gynecologist who has performed abortions for decades, describes the process of obtaining admitting privileges and the difficulties abortion providers face. After sending in an application a physician must wait for the hospital to send them the required materials, “but if the address of the practice on the application is of an abortion provider or clinic, [the hospital] won’t send [them] the package of materials required. [They] simply can’t apply.”9 Dr. Lynn and several other physicians have surmised that hospitals are only withholding privileges from qualified physicians who perform abortions and that other physicians do not face this discriminatory treatment. Hospitals have also revoked privileges granted to physicians after learning that the physicians perform abortions. For instance, in Texas two doctors, “received notices [...] informing them that their admitting privileges to the University General Hospital of Dallas have been revoked, with the hospital’s CEO claiming the hospital was unaware they were providing abortion care and that the hospital believed such care would damage its reputation.”10 What is curious about this revocation is that, “federal and state laws [...] forbid hospitals from discriminating against doctors who perform abortions,” and yet hospitals are clearly doing just that.11 Dr. Pamela Richter, another abortion provider in Texas, had her temporary admitting privileges revoked with no explanation and because of this, the clinic where she performed abortions, Reproductive Services, can no longer provide abortions at all.12 As the hospital gave no reason for the revocation, it not clear Dr. Richter’s privileges were revoked because she performs abortions. Dr. Richter, however, has performed over 17,000 abortions and her privileges were revoked soon after HB 2 was introduced.13 According to the Texas Hospital Association, giving admitting privileges to doctors who do not work for the hospital is expensive and time-consuming but this does not account for the fact that hospitals are revoking previously granted privileges from physicians whom they learn are providing abortion services.14 As mentioned previously, the District Court found that the admitting privileges requirement and the ambulatory surgical center requirement do not further ensure the health and safety of women undergoing an abortion. Several physicians have testified to this fact. Dr. Lynn stated in an interview: The admitting privileges requirements are [...] absolutely unnecessary. If you have a number of patients waiting for procedures, and something happens and a patient needs to be transferred to a hospital, you’re not going to leave everyone else and go to the hospital. That makes no sense. You’re going to refer that person to a gynecologist at the hospital. There is no safety issue involved here. If a patient shows up with an emergency, every hospital is required to admit that patient. They have to by law.15 It is rare that complications will arise from an abortion performed in a clinic. Dr. Richter, for example, has performed more than 17,000 abortions and not once had to send a patient to a hospital because of complications resulting from the procedure. According to Dr. Lynn even if abortion providers were granted privileges to hospitals, it is unlikely that they will exercise them. In essence, having admitting privileges at a hospital does nothing to further ensure the safety of an already safe procedure. The only result of the admitting privileges requirement is to limit certain physicians’ ability to perform legal abortions. Not only do the HB 2 requirements fail to further ensure the health and safety of women, the HB 2 requirements may actually create more health risks to women who cannot access the eight remaining clinics. The first risk is that the remaining clinics would have an influx of patients that they may not be able to handle, forcing women to wait longer for an appointment. As stated by the District Court, “[e]ven assuming every woman in Texas who wants an abortion [...] could travel to one of the four metropolitan areas where abortions will still be available, the cumulative results of HB 2 are that, at most, eight providers would have to handle the abortion demand of the entire state.”16 Furthermore, “[t]hat the State suggests that these seven or eight providers could meet the demand of the entire state stretches credulity.”17 Abortion is a time sensitive procedure. It is safest when performed early in a pregnancy. The increase in patients to these remaining clinics, assuming all women in Texas can access them, will increase wait times and may force women to have abortions later in pregnancy. In the worst-case scenario, a woman would not see an abortion provider at all before viability. Such instances may be rare, but they are possible. In such cases, women’s access to legal abortions becomes impossible and thereby violate the ruling in Roe. Clinics may be able to avoid the aforementioned problems if they hire more physicians. However, there are two barriers to hiring more physicians. First, as mentioned previously, admitting privileges to Texas hospitals are difficult, if not impossible, for abortion providers to obtain. Second, given the negative treatment of abortion providers by anti-abortion groups, many physicians are not willing to perform abortions. The harassment abortion providers face is unique to those physicians and many physicians will not perform abortions for that reason. In an article published in the Austin Chronicle, anti- abortion activist Abby Johnson, “discusses how her group investigated appraisal district records to find the new location of where an Austin abortion physician plans to work.”18 Johnson states, “These abortionists are feeling the pressure from the pro-life movement in Texas. I think they feel like they’re on the run. And that’s how we want to keep it.”19 If the HB 2 requirements are passed and there remain at most eight abortion providers in Texas, these activists will concentrate on those clinics and, “the dangerous impact of their intimidation tactics will be exacerbated.”20 Even if the number of physicians needed to meet the demand in Texas can obtain admitting privileges and work at one of the remaining clinics, they may choose not to do such work because they are putting themselves at risk. The harm abortion providers face from such anti-abortion groups is not unique to Texas. There are stories from all over the country and from other countries where abortion is legal of physicians receiving death threats. Dr. George Tiller, an abortion provider in Kansas, was killed outside his church and had received numerous death threats prior to this. The HB 2 requirements are making it so that abortion providers either cannot provide their services any longer or will face increased threats and increased danger to themselves. Physicians are allowed to conscientiously object to providing medical interventions in certain circumstances for moral and religious reasons. However, there are limits on this right. According to the American Congress of Obstetricians and Gynecologists, “[w]hen conscientious refusals conflict with moral obligations that are central to the ethical practice of medicine, ethical care requires that the physician provide care despite reservations or that there be resources in place to allow the patient to gain access to care in the presence of conscientious refusal.”21 I would argue fear for one’s safety in the face of immediate threats is perhaps a stronger ground on which to refuse to provide care than a personal belief that abortion is immoral or against one’s religion. ACOG also states, “[p]roviders with moral or religious objections should either practice in proximity to individuals who do not share their views or ensure that referral processes are in place so that patients have access to the service that the physician does not wish to provide.”22 This responsibility has been largely disputed by the medical community but in cases of rape, incest, and health risks to women, referrals must be made without exception. However, under the requirements of HB 2, working in proximity to an abortion provider may not be possible because they are so geographically limited. Referrals are supposed to be made within reason. Some areas of Texas, such as the Rio Grande Valley, are up to 200 miles away from the nearest clinic that would remain open if HB 2 is passed. Referrals may simply not be feasible given the geographical distances and the decreasing number of available physicians. As mentioned above, there are two risks to the health and safety of women as a result of HB 2. The second of these is that if a woman cannot access one of the remaining clinics, she may seek out a more convenient but illegal and unsafe abortion, which is far more likely to result in a dangerous complication. Dr. Lynn states, “[b]ecause of the restrictions lawmakers impose, women will seek abortions illegally, and we’re going to see a rise in septic abortions.”23 Some areas of Texas might effectively revert back to a pre-Roe era where abortions were performed in unsanitary conditions by unqualified people resulting in dangerous medical complications far more often than legal abortion procedures do now. Physicians like Dr. Lynn who want to prevent this from happening generally cannot do so without facing legal sanction. Physicians have a duty to provide safe medical care and if they cannot obtain admitting privileges, they cannot exercise this duty. ACOG released a statement expressing their objections to the new requirements. They state that HB 2 is, “plainly intended to restrict the reproductive rights of women in Texas through a series of requirements that improperly regulate medical practice and interfere with the patient-physician relationship.”24 Executive Vice-President of ACOG, Hal C. Lawrence III stated: The Texas bills set a dangerous precedent of a legislature telling doctors how to practice medicine and how to care for individual patients. ACOG opposes legislative interference, and strongly believes that decisions about medical care must be based on scientific evidence and made by licensed medical professionals, not the state or federal government.25 Abortion is one of only a few areas of medicine where the legislature imposes so many regulations restricting particular physicians’ ability to practice medicine. Not only are abortions providers being regulated by the state, they are also facing clear discrimination from others within the medical community. The state is closing down clinics that do not meet the ambulatory surgical center requirements and hospitals are denying physicians admitting privileges because they perform abortions. In summary, abortion providers are being discriminated against both by the legislature and other members of the medical community. Other physicians who do not perform abortions are not denied admitting privileges on discriminatory grounds. Clinics that cannot afford upgrades to become an ambulatory surgical center are being grandfathered in, while abortion clinics are being forced to close down. Ob-Gyns who conscientiously object to performing abortions and who are not located in close proximity to at least one abortion provider cannot effectively fulfill their duty to refer patients. Lastly, given the barriers these regulations will create, there will likely be a rise in complications resulting from abortions provided under grossly unsafe conditions. Physicians, whose duty it is to provide safe and effective medical care, are being denied the right to exercise this duty. While this denial may not be unconstitutional, it is certainly unjust and discriminatory and creates obstacles that other physicians do not face. Most importantly, these obstacles are creating an undue burden for women. The HB 2 requirements do not increase the health and safety of abortions; all they do is create substantial obstacles for women. In light of these observations, the requirements seem to me to be in clear violation of Casey, in which it was decided that, “[u]nnecessary health regulations that have the purpose or effect of presenting a substantial obstacle to a woman seeking an abortion impose an undue burden on that right.”26 These regulations do just what Casey was meant to prohibit and this is accomplished through limiting physicians’ ability to practice safe abortions across the state of Texas. Therefore, the HB 2 requirements may not impose an undue burden on doctors but they do impose an undue burden on women. PDF available: Rachel Hill, "Texas HB 2," Voices in Bioethics. References: 1 Planned Parenthood of Southeastern Pennsylvania v. Casey, pg. 2. 2 Whole Women’s Health v. Lakey, pg. 2. 3 Ibid. 4 Ibid., 4. 5 Ibid., 2. 6 Planned Parenthood v. Casey, pg. 16 7 AMA Code of Medical Ethics, “Opinion 2.01 – Abortion,” American Medical Association. 8 Whole Women’s Health v. Lakey, pg. 10. 9 Dr. Sherwood Lynn, “A Texas Ob-Gyn Details the Horrific Consequences of Abortion Restrictions,” Cosmopolitan. 10 Feminist Newswire, “Texas Hospitals Revoke Admitting Privileges to Abortion Providers,” Feminist Majority Foundation Blog. 11 Ibid. 12 Ibid. 13 Ibid. 14 Glenn Hegar, “Texas Hospital Association’s Statement of Opposition to Section 2 of the Committee Substitute for Senate Bill 5,” Texas Hospital Association. 15 Dr. Lynn, “A Texas Ob-Gyn.” 16 Whole Women’s Health v. Lakey, pg. 10. 17 Ibid. 18 Mary Tuma, “Undercover Audio Reveals Anti-Abortion Tactics: Anti-abortion activists monitor and track providers, patients,” Austin Chronicle. 19 Ibid. 20 Ibid. 21 Committee on Ethics, “The Limits of Conscientious Refusal in Reproductive Medicine,” The American Congress of Obstetricians and Gynecologists. 22 Ibid. 23 Dr. Lynn, “A Texas Ob-Gyn.” 24 “Ob-Gyns Denounce Texas Abortion Legislation: Senate Bill 1 and House Bill 2 Set Dangerous Precedent,” The American Congress of Obstetricians and Gynecologists. 25 Ibid. 26 Planned Parenthood v. Casey, pg. 16. (shrink)

In most social species, position in the male social hierarchy and reproductive success are positively correlated; in humans, however, this relationship is less clear, with studies of traditional societies yielding mixed results. In the most economically advanced human populations, the adaptiveness of status vanishes altogether; social status and fertility are uncorrelated. These findings have been interpreted to suggest that evolutionary principles may not be appropriate for the explanation of human behavior, especially in modern environments. The present study tests the (...) adaptiveness of social status with actual mating and reproductive data in a representative sample of males from an industrial society. Reproductive success, even when assessed by a more reliable measure ofactualmale fertility than the one commonly used, fails to correlate with social status. In striking contrast, however, status is found to be highly correlated withpotentialfertility, as estimated from copulation frequency. Status thus accounts for as much as 62% of the variance in thisproximatecomponent of fitness. This pattern is remarkably similar to what is found in many traditional societies and would result in a substantial positive relationship between cultural and reproductive success in industrial populations were it not for the novel conditions imposed by contraception and monogamy. Various underlying mechanisms are suggested for these findings, illustrating the value of current behavioral and reproductive data in the study of adaptation. It is concluded that evolutionary explanations of human behavior remain entirely relevant in modern societies. (shrink)

Preimplantation genetic diagnosis is a technique which was originally developed as an alternative to prenatal diagnosis for couples at high risk of transmitting a genetic defect. It allows scientists to check specific genetic defects of the embryo obtained through in vitro fertilization so that only embryos not affected by the tested disease or balanced for the tested chromosomes can be replaced. Recently, case reports reveal that clinicians applying PGD are increasingly confronted with requests by parents with an affected child whishing (...) for PGD not only to test IVF-created embryos for genetic disease but also to test for a nondisease trial related to immune compatibility with a child in the family in need of a hematopoietic stem cell transplant. Only embryos HLA matched with an existing sibling in need of a compatible donor of haematopoietic stem cells would be transferred. In this article, our main objective is not to answer the question of the ethical permissibility of this technique. We rather want to clarify some anthropological options underpinning this technique, which have to be taken into account for an ethical evaluation. By virtue of its very being, the human person is multidimensional: open to itself, to another and to society. This multidimensional character of the human person is a real challenge in the field of human genetics and medically assisted reproduction: a couple never decides solely for itself, but its decision has an enormous impact on their offspring; the physician is a necessary third person in the decision making process; a parental decision is influenced by and ma y change the public support of PGD. First we have to evaluate the request of the couple to use PGD in order to create a donor sibling. The main ethical argument against this kind of request is the instrumentalization of the future child. The child becomes an instrument to cure another child. One of the fundamental rules underlying Western moral thinking is the Kantian imperative. The second formulation of the categorical imperative goes as follows: ‘Act in such a way that you always treat humanity, whether in your own person or the person of any other, never simply as a means, but always at the same time as an end’. From this perspective we advance the ethical requirement to surpass the apparent discrepancy between the need of the parents to produce a healthy child and the desire of parents to have a child. Second, the physician should take into account the fact that a technological innovation may have such a compelling character that human reproductive freedom will be restricted rather than enlarged. Thus the physician should be guarded from engaging in so-called medical futile acts. Third, the experience of the donor child will be discussed. It could be argued that a heavy burden is placed on the donor child. The transplantation may fail and this may give the child a fundamental sense of unworthiness and deficiency and a feeling of not being able to live up to the expectations. The psychological impact of stem cell donation among siblings should indeed not be underestimated. Finally, on societal level, the need for instant success has contributed to ever more invasive reproductive technologies. We question however that reproductive success does not necessarily depends on the invasiveness of the techniques. Parents should be given time to put meaning on their lack of reproductive omnipotence. (shrink)

We examine the relationship between birth order and reproductive behaviors in a sample of Australian residents, accounting for personality, personal achievements, and family structure. Using generalized linear models and survival analyses we build predictive models for each reproductive measure and test those models on an independent data subset. Compared with functional firstborns (middle-borns more than 5 years younger than their next older sibling), male middle-borns and last-born females had younger ages of first sexual intercourse, and middle-born females had (...) a younger age at first pregnancy. There was no difference in females’ age at first birth. Male middle-borns tended to have an older average age at first birth. Controlling for age, both male and female middle-borns had fewer children. Overall, middle-borns differ more from functional firstborns than do last-borns. Given the significant but small effect sizes demonstrated in this study, we suggest that developmental characteristics that may facilitate middle-borns’ success within the natal family carry slight fitness costs during the reproductive years. (shrink)

Drawing on feminist philosophical accounts of reproduction and initial data acquired through research with migrant mothers in London, this article argues that the role and place of reproduction remains under-theorized within scholarly accounts of women's role in migration processes. Working with an expanded concept of reproduction that includes not only childbirth and motherhood, but also the work of reproducing heritage, culture and structures of belonging, it argues that feminist migration scholars can draw on valuable theoretical resources in order to (...) tell more complicated stories about the place of reproduction in migration, and challenge the often problematic gendered distinctions between travelling and staying put, change and repetition that continue to underpin some of the narrative structures operative in migration studies. (shrink)

SummaryFrom 1996 to 2006, Nepal experienced a substantial fertility decline, with the total fertility rate dropping from 4.6 to 3.1 births per woman. This study examines the associations between progress towards universal primary and secondary schooling and fertility decline in rural Nepal. Several hypotheses regarding mechanisms through which education affects current fertility behaviour are tested, including: the school environment during women's childhood; current availability of schools; knowledge of educational costs; and women's own educational attainment. Data for the analysis come from (...) the 2003–04 Nepal Living Standards Survey, a nationally representative random sample of households, which includes detailed data on fertility, household expenditure, educational attainment, demographic characteristics and the use of social services. Census and administrative data are also used to construct district-level gross enrolment ratios for primary and secondary schools during the women's childhood. Discrete dependent variable modelling techniques are used to estimate the effects of the following variables on the probability of women giving birth in a given year: district-level gross enrolment ratios for primary and secondary schools during women's childhood; having had a child previously in school; women's own educational level; current school availability; and other covariates. Separate models are estimated for the overall sample of rural women of reproductive age, and for parity-specific sub-samples. The results suggest that district-level gross enrolment ratios for secondary schools and, in some instances, having had a previous child enrolled in school are significant determinants of fertility in rural areas. These results are highly independent of women's own educational levels. Overall, the results suggest that, in the rural Nepal context, mass schooling influences the fertility transition through both community- and household-level pathways. (shrink)

Direct to consumer genetic testing offered via the Internet has been available for over a decade. Initially most tests of this type were offered without the input of the consumer’s own health professional. Ethical and practical concerns have been a raised over the use of such tests: these include fulfilling the requirement for informed consent, utility of results for health care management and the potential burden placed upon health services by people who have taken tests.

The notion of being a burden to others is mostly discussed in the context of care‐intensive diseases or end‐of‐life decisions. But the notion is also crucial in decision‐making at the beginning of life, namely regarding prenatal testing. Ever more sophisticated testing methods, especially non‐invasive prenatal testing (NIPT), allow the detection of genetic traits in the unborn child that may cause disabilities. A positive result often influences the decision of the pregnant women towards a termination of the pregnancy. (...) Thus, critics claim that these testing methods send a negative message to people with disabilities. At the core of this is what we call the burden assumption. This assumption claims that children with disabilities are necessarily a burden to others, especially to their parents and other family members. In this paper, we discuss what being a burden to others means in this context and how such an attitude can be avoided without restraining reproductive autonomy. A closer examination shows that the burden assumption is mostly based on misinformation and a false model of disability. Empirical studies as well as narrative evidence from parents who raise a child with disabilities show that the burden assumption is wrong. Raising a child with disabilities does not necessarily mean a decrease in the quality of life. We show how the burden assumption can be challenged through an advanced genetic counselling that combines empirical evidence with narratives from a first‐person perspective. (shrink)

This article examines the construction of parenthood, drawing on Brazilian cisgender, heterosexual, and homosexual couples' experiences in using assisted reproduction technologies (ART), particularly the surrogacy. For that purpose, we interviewed: 1) a lesbian woman who had her daughter through her partner's pregnancy, using ART with anonymous donor semen; 2) a gay man who, together with his partner, used a surrogacy service under contract via a specialised offshore agency; 3) a woman who was a surrogate, in Brazil, for her (...) sister-in-law and brother who lived abroad and, from abroad, sent an embryo fertilised for surrogacy; 4) a woman who resorted to her sister-in-law in order to be a mother by surrogacy, with ovules from the woman herself fertilised with semen from her husband; and 5) the sister-in-law mentioned in 4), who acted as surrogate for her brother and his wife. These interviews made it possible to think about the discursive construction of the legitimacy of such parenthoods, as it is produced by access to, and manipulation and circulation of, reproductive technologies and persons. This biomedical management of bodies sets up a material and discursive circuit that, in turn, produces a complex web of personal, normative, legal, professional and market relationships, particularly with a view to construction of a parenthood anchored in a notion of biologically-constituted origin. In this respect, biological, affective and social bonds merge to produce a precise placement of who is the father and/or who is the mother, as well as who are the important others and how they are linked to the child in a broader web of parenthood. (shrink)

Two lecture styles were examined to determine which was more effective for enhancing content learning in college students. The same experienced guest lecturer presented information about bipolar disorder (a combination of depression and mania) to college students in human service-related fields. Students in classes assigned to the control group received a standard, didactic lecture. In classes assigned to the experimental group, the presenter began the lecture by informing the students that she had bipolar disorder and enhanced the standard didactic (...) lecture by interspersing descriptions of her personal experiences living with bipolar disorder. Content-specific pre-tests and post-tests developed by the researchers were used to compare acquisition of knowledge about the disorder across groups of students. Results showed that students who received the personal/experiential lecture acquired significantly more knowledge about bipolar disorder than did students who received the standard, didactic lecture. Theories and procedures that may enhance student learning and thinking in related areas are discussed. (shrink)

Commercial genetic testing offered over the internet, known as direct-to-consumer genetic testing (DTC GT), currently is under ethical attack. A common critique aims at the limited validation of the tests as well as the risk of psycho-social stress or adaption of incorrect behavior by users triggered by misleading health information. Here, we examine in detail the specific role of advertising communication of DTC GT companies from a medical ethical perspective. Our argumentative analysis departs from the starting point (...) that DTC GT operates at the intersection of two different contexts: medicine on the one hand and the market on the other. Both fields differ strongly with regard to their standards of communication practices and the underlying normative assumptions regarding autonomy and responsibility. Following a short review of the ethical contexts of medical and commercial communication, we provide case examples for persuasive messages of DTC GT websites and briefly analyze their design with a multi-modal approach to illustrate some of their problematic implications. We observe three main aspects in DTC GT advertising communication: (1) the use of material suggesting medical professional legitimacy as a trust-establishing tool, (2) the suggestion of empowerment as a benefit of using DTC GT services and (3) the narrative of responsibility as a persuasive appeal to a moral self-conception. While strengthening and respecting the autonomy of a patient is the focus in medical communication, specifically genetic counselling, persuasive communication is the normal mode in marketing of consumer goods, presuming an autonomous, rational, independent consumer. This creates tension in the context of DTC GT regarding the expectation and normative assessment of communication strategies. Our analysis can even the ground for a better understanding of ethical problems associated with intersections of medical and commercial communication and point to perspectives of analysis of DTC GT advertising. (shrink)

Students’ learning engagement is recognized as one of the main components of effective instruction and a necessary prerequisite for learning, but students’ learning engagement in flipped classroom poses some pedagogical challenges. This study aimed to promote students’ learning engagement via the flipped classroom approach. Design-based research was adopted in this study to conduct an experiment involving three iterations in a Modern Educational Technology course in a Chinese university. The participants included 36 third-year pre-service teacher undergraduates. Classroom observations and a (...) learning engagement questionnaire were used to measure the effectiveness of the flipped instruction in terms of students’ learning engagement. Data analysis applied descriptive statistics, ANOVA, and paired samples t tests. The results showed that after three rounds of iterative experiments, students’ learning engagement significantly improved. Several principles are provided as guidelines for instructors to implement flipped classroom approach to promote students’ learning engagement. (shrink)

Clinical genetics encompasses a wider range of activities than discussion of reproductive risks and options. Hence, it is possible for a clinical geneticist to reduce suffering associated with genetic disease without aiming to reduce the birth incidence of such diseases. Simple cost-benefit analyses of genetic-screening programmes are unacceptable; more sophisticated analyses of this type have been devised but entail internal inconsistencies and do not seem to result in changed clinical practice. The secondary effects of screening programmes must be assessed (...) before they can be properly evaluated, including the inadvertent diagnosis of unsought conditions, and the wider social effects of the programmes on those with mental handicap. This has implications for the range of prenatal tests that should be made available. While autonomy must be fully respected, it cannot itself constitute a goal of clinical genetics. The evaluation of these services requires interdepartmental comparisons of workload, and quality judgements of clients and peers. (shrink)

Reducing the global treatment gap for mental health conditions in low- and middle-income countries requires not only an expansion of clinical psychology training but also assuring that graduates of these programs have the competency to effectively and safely deliver psychological interventions. Clinical psychology training programs in LMICs require standardized tools and guidance to evaluate competency. The World Health Organization and UNICEF developed the “Ensuring Quality in Psychological Support” platform to facilitate competency-based training in psychosocial support, psychological treatments, and foundational helping (...) skills, with an initial focus on in-service training for non-specialists. Our goal was to design the first application of EQUIP to implement competency-based training into pre-service education for clinical psychology trainees. With Makerere University in Uganda as a case study, we outline an approach to develop, implement, and evaluate a competency-based curriculum that includes seven steps: Identify core clinical psychology competencies; Identify evaluation methods appropriate to each competency; Determine when competency evaluations will be integrated in the curriculum, who will evaluate competency, and how results will be used; Train faculty in competency-based education including conducting competency assessments and giving competency-based feedback; Pilot test and evaluate the competency-based education strategy with faculty and students; Modify and implement the competency-based education strategy based on pilot results; and Implement ongoing evaluation of the competency-based curriculum with continuous quality improvement. This approach will be formally evaluated and established as a foundation for pre-service training in other low-resource settings. (shrink)

BackgroundCarrier screening is generally performed with the aim of identifying healthy couples at risk of having a child affected with a monogenic disorder to provide them with reproductive options. Expanded carrier screening, which provides the opportunity for multiple conditions to be screened in one test, offers a more cost-effective and comprehensive option than screening for single disorders. However, implementation of ECS at a population level would have implications for genetic counseling practice.MethodsWe conducted semi-structured interviews with sixteen European clinical and (...) molecular geneticists with expertise in carrier screening to explore their views on the implementation of ECS in the clinical setting.ResultsUsing inductive content analysis, we identified content categories relevant to the pre- and post-test settings. Participants believed ECS would ideally be targeted at couples before pregnancy. There was some disagreement regarding the acceptability of performing ECS in individuals, with several participants actively opposing individual-based screening. In addition, participants discussed the importance of ensuring informed and voluntary participation in ECS, recommending measures to minimize external pressure on prospective parents to undergo testing. A need for adequate counseling to foster informed, autonomous reproductive decision-making and provide support for couples found to be at risk was emphasized.ConclusionsPractical challenges in optimizing pre-test education and post-test counseling should not be underestimated and they should be carefully addressed before implementing ECS in the clinical setting. (shrink)

Given the rapid growth of music technology, this study reports Chinese pre-service music teachers’ perceptions of musical instrument learning assisted by augmented reality. In this study, we conducted a small-scale case study with six pre-service teachers enrolled in a music teacher training programme at a comprehensive university in China. Participants engaged in semi-structured, face-to-face interviews after hands-on experiences with an AR-based piano learning app. Thematic analysis revealed that the participants were generally aware of the potential of this instructional (...) approach but doubted its efficacy and exhibited weak intention to adopt it in their future classrooms. Implications of the findings for music teacher training are discussed. (shrink)

Preimplantation genetic testing for polygenic disorders (PGT-P) has been commercially available since 2019. PGT-P makes use of polygenic risk scores for conditions which are multifactorial and are significantly influenced by environmental and lifestyle factors. If current predictions are accurate, then absolute risk reductions range from about 0.02% to 10.1%, meaning that between 10 and 5,000 in vitro fertilization patients would need to be tested with PGT-P to prevent one offspring from becoming affected in the future, depending on the condition (...) and the number of embryos available. Survey and interview data reveal that patients and the public have largely favorable views regarding the use of PGT-P for disease prevention; however, clinicians and professional organizations have many reservations. The use of PGT-P raises multiple social and ethical concerns including the need for adequate counseling, the setting of realistic expectations, the application of distributive justice, the impact of environmental and social determinants of health, and the potential exacerbation of health inequities. Clinicians expressed significant concerns relating to the cost of PGT-P, the potential time-consuming counseling for reproductive endocrinologists and genetic counselors, the intentional creation of supernumerary embryos, and patients’ unrealistic expectations regarding “healthiest disease-free” embryos. Furthermore, current evidence lacks long-term outcome data and generalizability. Prior to offering PGT-P to patients, additional clinical validation studies are needed. Also, ethical and social considerations raised by PGT-P should be carefully delineated. Systemic practices to increase equitable access to unbiased genetic counseling and reproductive services would be desirable prior to the ethical implementation of PGT-P. (shrink)

Recent changes in access to contraceptive and infertility treatments in the state of Illinois, and across the United States more generally, have heightened class cleavages in access to reproductive health care benefits in the United States. Using data gleaned from government testimonies, public documents, and telephone interviews, the authors found that poor women have broad access to contraceptive coverage but very little access to infertility treatments, while working-and middle-class women have increasingly broad coverage of infertility treatments but spare coverage (...) of contraceptives. These findings suggest that while the extreme measures of the eugenics movement are less frequently in evidence, class differences in access to reproductive services lead to an equally dualistic, albeit unstated, fertility policy in the United States: encouraging births among working- and middle-class families and discouraging births among the poor, particularly those on Medicaid. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Kennedy Institute of Ethics Journal 12.1 (2002) 103-113 [Access article in PDF] Scope Note Update Searching Across Boundaries: National Information Resource on Ethics and Human Genetics* While indeed an historical moment, the announcement of the mapping of the human genome has been treated in the literature as a beginning—a new way to think about biology and the ways in which biological concepts are applied to medicine. Issues of both (...) Science and Nature magazines celebrated the event by establishing interdisciplinary websites where readers can access essays on aspects of genome mapping and directly link to databases to search for more information on the topics (IV. Genome Gateway 2001; The Human Genome 2001). Since 1994, the National Information Resource on Ethics and Human Genetics (NIREHG), a special project of the National Reference Center for Bioethics Literature (NRC), has been providing such an integrated information service on ethics and genetics. Designed to enable a wide range of users to go from annotated bibliographies (Scope Notes) and brief essays (called "enotes") to database searching, NIREHG fosters an interdisciplinary approach to research on ethics and genetics. Links are provided between and among Scope Notes and enotes to information maintained on the NIREHG site as well as to sources found throughout the Internet. In providing the following annotations added to NIREHG materials since 1997, the Kennedy Institute of Ethics Journal (in its online presence through Project Muse) becomes an additional forum for NIREHG links. "It is a rare and wonderful moment when success teaches us humility, and this, I argue, is precisely the moment at which we find ourselves at the end of the twentieth century" (IV. Keller 2000, p. 7). It is with both joy and humility that we celebrate the mapping of the human genome. [End Page 103] I. Genetic Testing Andrews, Lori B. Future Perfect: Confronting Decisions About Genetics. New York: Columbia University Press, 2001. 264 p.Noting the wide impact of genetic testing, Andrews discusses patient self concept, reproduction decisions, confidentiality, discriminations in health insurance and employment, the need for competent counseling, and the legal, ethical, and social regulations she deems important to help solve dilemmas arising from the tests and their ensuing ramifications. She describes three models, pointing out both advantages and problems: a medical model with physician gatekeepers, a public health model that could provide education as well some testing for those unable to afford tests, and a fundamental rights model that could give greater weight to individuals decisions about the use of health care services. The book has 85 pages of footnotes.American Society of Human Genetics. Social Issues Subcommittee on Familial Disclosure. Professional Disclosure of Familial Genetic Information. American Journal of Human Genetics 62 (2): 474-83, February 1998.The ASHG statement outlines points to consider: the general rule of confidentiality, exceptional circumstances that permit disclosure, and the ethical duty to inform patients about familial implications. Background discussion includes: ethical frameworks for disclosure of otherwise confidential information, the duty to warn under law, and international trends and positions.Boetzkes, Elisabeth. Genetic Knowledge and Third-Party Interests. Cambridge Quarterly of Healthcare Ethics 8 (4): 386-92, Summer 1999.Protection from the interests of insurers or prospective employers are discussed from the point of view of the ethical basis of the professional obligation to confidentiality as well as the right to privacy of those tested. However, the author supports family members, saying that "first-party resistance to disclosure may be overcome by weighty third-party claims."Chadwick, Ruth; Shickle, Darren; ten Have, Henk; and Wiesing, Urban, eds. The Ethics of Genetic Screening. Dordrecht, The Netherlands: Kluwer Academic Publishers, 1999. 255 p.Twenty-one chapters and 23 authors provide views of genetic testing/screening in different European countries and offer brief discussions of sociological perspectives, moral and philosophical issues, privacy, reconciling liberty and the common good, and questions raised in genetic testing of children.Clayton, Ellen Wright. Genetic Testing in Children. Journal of Medicine and Philosophy 22 (3): 233-51, June 1997.Clayton argues that there is room for... (shrink)

In Nigeria, reproduction is highly valued, with many people desiring to produce a child ‘in their own image and likeness’. Previously, aspiring parents often resorted to adoption. Today, the availability of assisted reproductive technologies (ARTs) has provided options other than adoption for those desiring to procreate. Through ARTs, aspirations for a family may be attained through an exchange of reproductive goods and services, and not necessarily through traditional heterosexual relationships. ARTs have altered the perception of parenthood as it (...) exists in Nigeria, and courts face a difficult task in defining parenthood within Nigerian jurisprudence, as they can only adjudicate based on extant law. Although ARTs provide greater individual choices for fulfilling the desire to procreate, they raise a number of ethical and legal issues that evolving legal systems, such as that in Nigeria, are ill‐equipped to manage. This paper describes the traditional assignment of parenthood under indigenous laws and other sources of law within the Nigerian jurisprudence. We carried out an in‐depth study of the Nigerian legislative framework and found that there are no laws directly regulating parenthood, procreation and ARTs in Nigeria. We also found that the extant laws are only tangentially related and do not answer the relevant questions sufficiently well, especially concerning succession, nationality and assignment of responsibility in collaborative reproduction. We conclude by highlighting the need for and recommending a regulatory framework on ARTs with a particular focus on providing a definition for parenthood achieved through ARTs in Nigeria. (shrink)

Definition of the problem The present article focuses on the current international ethical debate on “responsible implementation” of expanded carrier screening to public healthcare systems. Expanded carrier screening is a novel genetic test which aims to provide information to couples about whether both partners carry a genetic variation for the same recessively inherited condition. It was introduced to the market by commercial laboratories in the U.S. in 2010; since about 2015, however, international debates have emerged on how and why to (...) offer the screening as a public health service. Arguments It is shown that, initially, enhancement of couples’ reproductive autonomy, not prevention of recessive disorders, has been established as the ethically well-founded aim and guiding principle of responsible implementation. Recently, however, in 2019, three well-known Dutch bioethicists argued that this aim has been embraced without much reflection and should therefore be replaced with the guiding principle of “responsible parenthood”. According to the latter, autonomous reproductive decision-making of couples or women is morally acceptable solely when carrier screening is done only during pregnancy. Before pregnancy, by contrast, couples are held to have a moral duty to take preventive measures if their future children are at risk of being affected by one of the “worst” recessive conditions. In the present paper, both of these conflicting ethical framings of expanded carrier screening are critically examined. Conclusions While the aim of reproductive autonomy also has problematic aspects, the notion of “responsible parenthood” is much more objectionable since it challenges voluntary participation in carrier screening, argues for directive genetic counseling, limits reproductive self-determination of women and couples, and introduces dubious concepts to the debate. (shrink)

The Canadian province of Quebec recently amended its Health Insurance Act to cover the costs of In Vitro Fertilization . The province of Ontario recently de-insured IVF. Both provinces cited cost-effectiveness as their grounds, but the question as to whether a public health insurance system ought to cover IVF raises the deeper question of how we should understand reproduction at the social level, and whether its costs should be a matter of individual or collective responsibility. In this article I examine (...) three strategies for justifying collective provisions in a liberal society and assess whether public reproductive assistance can be defended on any of these accounts. I begin by considering, and rejecting, rights-based and needs-based approaches. I go on to argue that instead we ought to address assisted reproduction from the perspective of the contractarian insurance-based model for public health coverage, according to which we select items for inclusion based on their unpredictability in nature and cost. I argue that infertility qualifies as an unpredictable incident against which rational agents would choose to insure under ideal conditions and that assisted reproduction is thereby a matter of collective responsibility, but only in cases of medical necessity or inability to pay. The policy I endorse by appeal to this approach is a means-tested system of coverage resembling neither Ontario nor Quebec's, and I conclude that it constitutes a promising alternative worthy of serious consideration by bioethicists, political philosophers, and policy-makers alike. (shrink)

Although the term commodification is sometimes criticised as imprecise or overused, in fact it has a complex philosophical ancestry and can never be used too much, because the phenomena that it describes are still gaining ground. The issues that commodification raises in relation to reproductive technologies include whether it is wrong to commodify human tissues generally and gametes particularly, and whether the person as subject and the person as object can be distinguished in modern biomedicine. This chapter examines three (...) areas in which commodification is a serious concern for important reproductive technologies: the sale of eggs for IVF and research, the banking of umbilical cord blood, and the use of gestational surrogates both domestically and internationally. Sales of human eggs for IVF or research are frequently disguised as “gifts”, which conceals the very real bodily risks and harms associated with ovarian hyperstimulation and egg harvesting undergone by egg “donors.” Umbilical cord banking is a fast-growing industry, with donated cord blood trading globally at very high prices; women who consent to banking of cord blood ostensibly for the potential future benefit of their child may not be informed of the likelihood that it will be traded in commercial markets or that the method used for harvesting may increase risks of jaundice in their babies. Commercial surrogacy also exploits altruism but in addition involves wrongful sale of babies, particularly in the international context. In each example, the commodification of women’s reproductive labour is masked by the manner in which ‘the lady vanishes’ under a gift model, ignoring the true economic value of their labour. (shrink)

On occasion, British in vitro fertilization practitioners look over the ocean to the practice of IVF and embryo research in the United States, wonder why these areas are subject to less regulation than in the United Kingdom, and ask how much less risky and more progressive IVF and embryo research might be if subject to additional federal, or at least state, regulation. To an American audience, imbued with the centuries‐old spirit of independence, regulation and autonomy can seem in tension. From (...) a British perspective, there is no necessary conflict. There is no dissent in the United Kingdom from the proposition that individual activities, services, and industries can be regulated and, at the same time, retain and exercise such autonomy as is their right within a safe sphere. From 1994 to 2002, I was the chair of the United Kingdom's Human Fertilisation and Embryology Authority, which regulates the practice of IVF and embryo research. The existence of the HFEA assures patients that safety and aspects of the practice of assisted reproduction are monitored, leaving them free to choose without worrying about danger, in the same way that the public may take only those drugs that have passed health and safety tests. I would propose that anxious and vulnerable patients do not have more autonomy in a less regulated, market‐driven field. (shrink)

Dana S. Belu combines Heidegger's phenomenology of technology with feminist phenomenology in order to make sense of the increased technicization of women's reproductive bodies during conception, pregnancy, and birth.

Ongoing research in the fields of genetics and biotechnology hold the promise of improved diagnosis and treatment of genetic diseases, and potentially the development of individually tailored pharmaceuticals and gene therapies. Difficulty, however, arises in determining how these services are to be evaluated and integrated equitably into public health care systems such as Canada's. The current context is one of increasing fiscal restraint on the part of governments, limited financial resources being dedicated to health care, and rising costs for new (...) health care services and technologies. This has led to increasing public debate in the last few years about how to reform public health care, and whether we should prohibit, permit or perhaps even encourage private purchase of health care services. ;In Canada, some of these concerns have crystallized around the issue of gene patents and commercial genetic testing, in particular as illustrated by the case of Myriad Genetics' patented BRACAnalysis test for hereditary breast and ovarian cancer. While most Canadians who currently access genetic services do so through the public health care system, for those with the means, private purchase is becoming an option. This situation raises serious concerns---about justice in access to health care; about continued access to safe and reliable genetic testing supported by unbiased patient information; and about the broader effects of commercialization for ongoing research and the Canadian public health care system. Commercial genetic testing presents a challenge to health care professionals, policy analysts, and academics concerned with the social, ethical and policy implications of new genetic technologies. Using the Myriad case as an exemplar, tools from moral philosophy, the social sciences, and health policy and law will be brought to bear on the larger issues of how as a society we should regulate commercial research and product development, and more coherently decide which services to cover under public health insurance and which to leave to private purchase. Generally, the thesis is concerned with the question of "how best to bring capital, morality, and knowledge into a productive and ethical relationship". (shrink)

Background: Moral case deliberation is a form of clinical ethics support to help healthcare professionals in dealing with ethically difficult situations. There is a lack of evidence about what outcomes healthcare professionals experience in daily practice after moral case deliberations. The Euro-MCD Instrument was developed to measure outcomes, based on the literature, a Delphi panel, and content validity testing. To examine relevance of items and adequateness of domains, a field study is needed. Aim: To describe experienced outcomes after participating (...) in a series of moral case deliberations, both during sessions and in daily practice, and to explore correlations between items to further validate the Euro-MCD Instrument. Methods: In Sweden, the Netherlands, and Norway, healthcare institutions that planned a series of moral case deliberations were invited. Closed responses were quantitatively analyzed. The factor structure of the instrument was tested using exploratory factor analyses. Ethical considerations: The study was approved in Sweden by a review board. In Norway and the Netherlands, data services and review boards were informed about the study. Results: The Euro-MCD Instrument was completed by 443 and 247 healthcare professionals after four and eight moral case deliberations, respectively. They experienced especially outcomes related to a better collaboration with co-workers and outcomes about individual moral reflexivity and attitude, both during sessions and in daily practice. Outcomes were experienced to a higher extent during sessions than in daily practice. The factor structure revealed four domains of outcomes, which did not confirm the six Euro-MCD domains. Conclusion: Field-testing the Euro-MCD Instrument showed the most frequently experienced outcomes and which outcomes correlated with each other. When revising the instrument, domains should be reconsidered, combined with theory about underlying concepts. In the future, a feasible and valid instrument will be presented to get insight into how moral case deliberation supports and improves healthcare. (shrink)

Low birth weight, intrauterine growth retardation, and prematurity are overwhelming risk factors associated with infant mortality and morbidity. The lack of efficacious prenatal screening tests for these three outcomes illuminates the problems inherent in bivariate estimates of association. A biocultural strategy for research is presented, integrating societal and familial levels of analysis with the metabolic, immune, vascular, and neuroendocrine systems of the body. Policy decisions, it is argued, need to be based on this type of biocultural information in order to (...) impact the difficult-to-change problems of low birth weight, intrauterine growth retardation, and prematurity. (shrink)

The national ethical guidelines relevant to assisted reproductive technology have recently been reviewed by the National Health and Medical Research Council. The review process paid particular attention to the issue of non-medical sex selection, although ultimately, the updated ethical guidelines maintain the pre-consultation position of a prohibition on non-medical sex selection. Whilst this recent review process provided a public forum for debate and discussion of this ethically contentious issue, the Victorian case of JS and LS v Patient Review Panel (...) [2011] VCAT 856 provides a rare instance where the prohibition on non-medical sex selection has been explored by a court or tribunal in Australia. This paper analyses the reasoning in that decision, focusing specifically on how the Victorian Civil and Administrative Tribunal applied the statutory framework relevant to ART and its comparison to other uses of embryo selection technologies. The Tribunal relied heavily upon the welfare-of-the-child principle under the Assisted Reproductive Treatment Act 2008. The Tribunal also compared non-medical sex selection with saviour sibling selection. Our analysis leads us to conclude that the Tribunal’s reasoning fails to adequately justify the denial of the applicants’ request to utilize ART services to select the sex of their prospective child. (shrink)

Birth regulation is a tired and worn-out conversation, so I will not approach the matter in that way. I think it much more exciting, and it raises all the same problems, to approach the issues of reproductive services through reproductive technologies that are now available. Since this is based on my recent experience with the American Fertility Society, now the American Society of Reproductive Medicine, I will take this tack. This presentation is a vehicle for getting some (...) questions on the table; hopefully, there will be enlightenment in the discussion and debates that follow. (shrink)

Translated by Drew S. Burk and Anthony Paul Smith. Excerpted from Struggle and Utopia at the End Times of Philosophy , (Minneapolis: Univocal Publishing, 2012). THE END TIMES OF PHILOSOPHY The phrase “end times of philosophy” is not a new version of the “end of philosophy” or the “end of history,” themes which have become quite vulgar and nourish all hopes of revenge and powerlessness. Moreover, philosophy itself does not stop proclaiming its own death, admitting itself to be half dead (...) and doing nothing but providing ammunition for its adversaries. With our sights set on clearing up this nuance, we differentiate philosophy as an institutional entity, and the philosophizability of the World and History, of “thought-world,” which universalizes the narrow concept of philosophy and that of “capital.” We also give an eschatological and apocalyptical cause to this end, of “times” or “ages” rather than those of philosophical practice. Last but not least, it is the Future itself in the performativity of its ultimatum that determines this end times, reversing these times from the Identity the Future accorded to it, withdrawing the thought-world from the lie of its death. Why this style of axioms and oracles, these more or less subtle distinctions, old and debased, with an appeal to the ultimata , to end times and last words? We fight to give, parallel to the concept of Hell, its new theoretical position, for its philosophical return and its non-philosophical transformation. No more so than any other word, Hell is not a metaphor here, just the Principle of Sufficient World. Every man, no doubt, has his “hell” readily available, connivance, control, conformism, domestication, schooling, alienation, extermination, exploitation, oppression, anxiety, etc. We have our little list that the Contemporaries established in the previous century in the same way one used to construct lists of virtues and vices or honors and wealth. They invented it for us without knowing it, for us-the-Futures who have as our responsibility to invent its use. In the Christian and Gnostic tradition, the struggle of the End Times takes place “on earth.” The most sophisticated of believers have it taking place in Heaven as well, above all in Heaven. The various kinds of gnosis imagine infinite falls and vertiginous highs, the vertigo of salvation. On Earth as in Heaven, a hell is available. The Marxists have the law of profit and the control of production, the class struggle Capital imposes on man. The Nietzscheans, the dull grumble of the struggle in the foundations of World and History, the domestication of man, the society of control. The phenomenologists, the capture of being, the most superficial amongst them, the age of suspicion. But all of these “hells” are taken from World, History, Society, and Religion. What we call Hell is no longer of the order of these specific and total intra-worldly generalities, it is both more singular and more universal, no longer being at all of the same order, it is the determinant Identity of these small hells strung out through history but unified here in the name of the last Humaneity. It is even found within the French idiom for hell [ enfer ], en-fer literally means “in-irons.” We are as much “in-irons” as we are “alive” [ en-Vie ]. We believe in Hell but as non-philosophers and it is even because we are non-philosophers that we can believe in it outside of any sort of religion. Hell is less mythological than ideological, it combines philosophizability with universal capital. Under what form? A single term could work for them without being a metaphor or something they would participate in by analogy, a more innovative and conjectural term than control, more universal than profit. It would denote the growing and permanent extortion of a surplus-value of communication, of speed and of urgency in change, in productivity and in work, in the pressure of images and slogans. It would be worse than solicitation, more tenacious than capture, more active and persecutory than control, softer and more insidious than a frontal attack, just as perverse as questioning and accusation, less brutal and offensive than extermination, less ritualized than inquisition, it would be soft and dispersed, instantaneous and vicious, it would be a crime without declared violence. Collusion and conformism, it would be afraid to show itself. Related to rumor, from which it borrows its infinite and tortuous ways. It is harassment. As a modernized form of Hell, perhaps harassment has a long future in front of it, of innocent torture, slow assassination, in short the fall, but radical with no way of recovering and which tolerates only salvation. THE PHILOSOPHICAL PAST OF NON-PHILOSOPHY Non-philosophy is thus Man as the utopian identity of the philosophical form of the World, a utopia destined to transform it. We still have to understand these equations, in particular that of the being-uni-versed from Man, and this book adheres to this by re-exposing non-philosophy in a different way via one of its new possibilities. It uses this opportunity to once again take up formulations that lead to objections answering certain external critics, as well as revisiting diverging interpretations specific to non-philosophers. A portion of this book is devoted to going through these theories via a strict or “lengthy” presentation of non-philosophy, and its defense against more expeditious solutions. This work of rectification is the occasion, merely the occasion, for refocusing non-philosophy on Man (the “Man-in-person,” “Humaneity”), and in a more innovative manner, on its utopian vocation established since the book Future Christ . As for this “occasion,” it is quite obvious. A school of posture, not to say a school of thought, supposes a minimum of closure from the most liberating of knowledge, a heritage, its utilization, and its no less certain dispersal. Within its development, a variety of interpretations will no doubt appear, deviations that are as much normalizations, and a struggle against this multiplication of divergent tendencies. These are perhaps not inevitable evils, especially here, merely a normal development according to the twisting paths of history. But the problem is made worse by the fact that this school of non-philosophers is that of utopia. Not the former attempts devoted to commenting on the worst authoritarian and criminal forms of the past and the present, but utopia as the determinant principle for human life, or to put it another way, of the Future as an irreducible presupposition of (for) thinking the World and History. Non-philosophers are engaged in an aleatory navigation between the respect for the most rigorous utopia, whose rules are not that of the reproductive imagination but those from the Future determining imagination itself, as well as the temptations, diversions, and remorse of history. Little by little, we will begin to understand that the Future as we understand it no longer has any temporal consistency or positive content, without being an empty form or a nothingness, but that it is foreclosed to past and present History, just as it is foreclosed to the place of places, the World, and that it is the only method for establishing the practice of thinking in a non-imaginary instance. Because it is the World and History that are imaginary and have a terrible materiality, it is not necessarily utopia. We will overlap two objectives here: the defense of non-philosophy against the (non-) philosophers that we are, only occasionally, and the introduction of philosophy to a rigorous future. Together they set out to definitively render, without any possible return to philosophical conformism or towards the facilities of the past and present, the non-philosophical enterprise understood as utopia or uchronia. Imagination and speculation, left to themselves and thus undistinguished, are quite good for participating in the grand game of History but have little value or worse for the Future which is unimaginable and unintelligible and must be maintained as such. MAN-IN-PERSON AS SUSPENSION OF THE PHILOSOPHICAL CHORA The point where philosophical resistance is concentrated is without a doubt the invention of the Name-of-Man, first name, oracular as much as axiomatic, of the determining cause for the non-philosophical posture. And that which concentrates the differends is the style of non-philosophy as identity that possesses the dual aspect, of discipline and of the oeuvre, of the theorem and of the oracle. But the real difficulty in understanding the simplicity of non-philosophy is profoundly hidden in the depths of philosophy itself. Because philosophy, from Parmenides to Derrida, even Levinas, continues to be a divided gesture, without a veritable immanence, transforming its thematic contents of transcendence in also forgetting to transform the operative transcendence in the element from which the ontology of surface is established which we will call, in memory of Plato, the chorismos. The general effect of the chora literally gives place to philosophy, demanding binding and sutures to which we will once and for all “oppose” the Man-in-person, his power of cloning, and his future being. All philosophy contains a hinter-philosophy in which it deploys its operations and weaves its tradition like an understudy of a topographical nature and in the best of cases being itself topological. Philosophy as well consists of two levels, its pre-ontological operative conditions on the one hand, and its superficial theme on the other, it too has its presupposed, but is not aware of it or erases it within the unity of appearance named Logos. Rightly, the Logos, and its flash or lightning nature, possesses a “dark precursor,” the chora, which is as much a virtual image, and philosophy, dazzled by its own lightning flash, seems to completely forget about it at the same time it sets itself up within it. Non-philosophy risks taking this same path, of confusing what it believes to be the real with its phantom double, contenting itself to working on the thematic level of philosophy, not its surface objects and its idle chatter (we stopped talking about this a long time ago and in any case they are merely simple materials for inducing a work of transformation), but the transcendence-form of its objects. In the end it risks, through precipitation, taking back up the heritage of philosophy, a heritage of a misunderstood presupposed, even more profound than the play of transcendences. This is what the imperative of the radicality of immanence meant, to treat immanence in an immanent manner, not to make a new object out of it. And from here we get non- (philosophy) and its refusal of the Platonic chorismos , symbol of all abstraction, and thus all transcendental appearance. There are no illusions. The message will leave a heritage in tattered pieces and interpretations. But it was difficult not to dispute the differend to its core. There will be complete confusion of the multiple, possible, and necessary effectuations of non-philosophy with its interpretations. The non-philosophical or human freedom of philosophical effectuation and the philosophical freedom of interpretation. Effectuations demand non-philosophy to return to zero from the point of view of its philosophical material and thus also but within these limits the formulation of its axioms , but in no way providing from the outset divergent interpretations of the aforementioned axioms. They are divergent because they do not take into account the material from which these axioms are derived within non-philosophy, and because they do not see themselves as symptoms of another vision of the World. The utterances of non-philosophy are not mathematical theorems and pure axioms, they merely have a mathematical aspect . They are, by their extraction or origin, mathematical and transcendental. And by their determined function in-Real, within non-philosophy, they are identically in-the-last-Humaneity entities which have an aspect of an axiom and an aspect of interpretation (or an oracular aspect as we say) that attempts (sometimes it is ourselves who provide the occasion) to isolate and transform, in complete freedom of interpretation. There will be an opportunity to complain about the complex character of the language of non-philosophy, an idiom saturated with classical references, sophisticated in a contemporary way. Its freedom of decision up against the whole of philosophy demands these effects of “complication” and “privatization,” as the saying goes. But it also demands fighting against the drift [ dérive ] of the pedagogical-all and the mediatic-all that leads philosophy into the shallow depths of opinion, which is the site of its impossible death. The noble idealism of “pop-philosophy” has been consumed into a “philo-reality;” against this we propose philo-fiction. Parricide, which is at the bottom of these interpretations and which we can judge as being quite fertile, although it has informed tradition, only takes place once or within one lone meaning. In regards to Parmenides, it was possible; Plato introduced the Other as non-being and language, bringing into existence the philosophical system of the World, but is it possible to repeat it again with the same fecundity in regards to non-philosophy, this time in introducing (non) religion or (non) art, still mixing them without taking into account this mixture, alternatively as a philosophical or religious resentment? If philosophy begins via a crime, it is no doubt obliged to continue down similar pathways, to the effect that the crimes of philosophy, once the founding crime has been committed, are a reaction of self-defense. It is undoubtedly from this that we get Marx’s declaration that history begins by tragedy and repeats itself or ends in farce. The preservation of rigor and fecundity is, in every respect, a psychologically difficult task within a theory such as non-philosophy. Having posited an essential objective of liberation in regards to philosophy and its services, one has often understood this objective as an authorization of providing particular interpretations of its axioms and ends up obliterating their scope. This ends up confusing, on one hand, two kinds of freedoms in regards to non-philosophy, the freedom of its interpretations and the freedom of its effectuations. On the other hand, any defense of “principles” against precipitated interpretations is immediately taxed with a will to orthodoxy, a prohibitive objection when we are dealing with, as is the case here, a heretical theory of thought. Nevertheless, it is time to stop confusing heresy as the cause of thought with an ideology of heresies, which is certainly not at all our object, but rather a form of normalization. As for the “disciplinary” aspect, which is not the only aspect, it demands something other than philosophical “answers to objections,” a precision in the definition and use of its procedures in the formation of utterances, since non-philosophy is neither a supplementary doctrine interior to philosophy nor a vision of the world but one whose priority is a “vision of Man,” or rather Man as “vision” that implies a theory and a practice of philosophy. In the end, struggle is only one aspect of non-philosophy, not its whole or telos, struggle coming only from its materiality. In particular, if the discipline of non-philosophy is inseparable from struggle, it is not a question of reducing the monomaniacal obsession of its “marching orders.” This would reduce its complexity and kill its indivisibility, deploying it in a “long march” and a form of Maoization whose philosophical presuppositions no longer have any pertinence here, a case of the One and the Two, which are now cloned and no longer tied together. More generally, non-philosophy is a complex thought composed of a multitude of aspects, which is to say, unilateral interpretations, of a philosophical origin but reduced by their determination in-the-last-instance . The “liberalism” of non-philosophy is merely one of the aspects of which it is capable, not an essence. Similarly, it is only capable of having a “Maoist” aspect. Let us generalize. The weakness of non-philosophy is due to a specific cause, the determination-in-the-last-Humaneity of a subject for the World. Everything that has a right to the philosophical city can be said about it in turn and in a retaliatory mode since Man contributes nothing of himself that Man takes from the World. We can consider non-philosophy as being pretentious, absurd, idealistic, empty, materialistic, formalistic, contradictory, modern, post-modern, Zen, Buddhist, Marxist; it endures or tolerates, perhaps “appeals” to, or at least renders possible, sarcasms, ironies, and insults without even talking about the misunderstandings, partly for the same reason as psychoanalysis. All of this goes beyond simple “deviations.” They are its aspects, which is to say, its “unilateral” philosophical interpretations in both senses of the word, being either sufficient coming from the mouth of philosophers, or reduced to their absolute dimension of sufficiency and totality in the mouths of non-philosophers, and both times due to the weakness and strength of Man-in-person as their determination only in-the-last-instance. The non-philosopher is certainly not a Saint Paul fantasizing about a new Church. The non-philosopher is either a (Saint) Sebastian whose flesh is pierced with as many arrows as there are Churches, or a Christ persecuted by a Saint Paul. What is engaged in here is the practice of retaliation. A negative rule of the non-philosophical ethics of outlawed discussion by way of argumentation (the sufficient is you, the orthodox one is always you, you are the fashionable one, and when a master you are someone else) that is founded on the confusion of effectuations of non-philosophy and of its overall interpretations. Retaliation is the law but as with any too-human law, it must acquire a dimension that displaces it, or rather emplaces it and takes away its authority but not all of its effectiveness. If the non-philosopher is only authorized by himself, which is to say by philosophy but limited by the Real-of-the-last-instance, its critique of other non-philosophers can merely be retaliatory under the same conditions, only by the Real limited in-the last-instance. THE TREE OF PHILOSOPHICAL SAINTLINESS The thematic horizon or material of these debates is in the relationships between philosophy, religion as gnosis, and non-philosophy. It is inevitable, regarding non-philosophers in general (whether they are non-philosophers by name or simply its neighbors) that we often end up evoking Marx’s Holy Family and imagining, arranged on the neighboring branches of the tree of philosophy and annexed, sometimes abusively, to non-philosophy, authors who would quite evidently and quite rightly refuse this label. So it is that we find, for example, a Saint Michel, a Saint Alain, a Saint Gilles 1 without even mentioning the youngest who aspire as well to the freedom of “saintliness” and who make their muted voices heard here. If there is a Holy Family of non-philosophers, it extends completely beyond these three, provided that the sectarian spirit can save us. This book is organized in the following manner: To begin, in order to recall the essential part of the problematic, we have organized a Summary of Non-Philosophy , a vade-mecum of notions and basic problems, in a classical style. Secondly, there is Clarifications On the Three Axioms of Non-Philosophy , designed to posit their proper use as much as to elucidate their meaning. Thirdly, an analysis of Philosophizability and Practicity , both being extreme constituents of philosophical material or the contents of the third axiom. Fourthly, the heart of this work: Let us Make a Tabula Rasa of the Future or of Utopia as Method . Fifthly, we have a theoretical outline of a non-institutional utopia, The International Organization of Non-Philosophy, L’Organisation Non-Philosophique Internationale, (ONPHI) already created in practice but under the conditions of possibility and functioning from which here we put into question “de jure,” thus not without a perplexity concerning “facts,” in any case, without the capability of “getting to the bottom of things.” Sixthly, an essay characterizing The Right and the Left of Non-Philosophy , a brief topology of several philosophizing and normalizing positions of proponents or tenants of this problematic. Seventhly, Rebel in the Soul: A Theory of Future Struggle , a systematic discussion starting from a confrontation of non-philosophical gnosis and non-religious gnosis to the extent that they pose, posed or perhaps still will pose themselves as rivals to non-philosophy in a mixture of fidelity and infidelity. Despite the fact that it can also be read as putting non-philosophy into perspective: it pits against a standard Platonism two contemporary appropriations of Gnosticism. On the basis of the paradigm of Man who never ceases to come as the Future-in-person, each one of these moments strives to reestablish not the “true” non-philosophy and its orthodoxy, but the minimal conditions to respect in order to allow for its maximum fecundity. And in order to bring about one of the last possibilities of its development, making explicit Humaneity as a utopia-for-the-World. In introducing these considerations in the form of a “testament” and “ultimatum,” we want to indicate two things: First, that this is the last time we will intervene in order to caution non-philosophers against the temptation of returning and looking backwards towards philosophy. Only a disillusioned nostalgia for the former World and its traditions barely remain permissible to us.… Secondly, that non-philosophy is also a sort of ultimatum for considering one’s life and transforming one’s thought from the perspective of a uni-version rather than a conversion. Man as future is this ultimatum in action, not an impatient self-proclaimed genius, and philosophy is his testament. It is obviously the ultimatum that determines this testament as “old” with a view towards a life that is, itself, non-testamentary. In and of itself, the “old” can never bear a veritable eschaton. Thus, this book intersects according to the logic of this paradigm, under the sign of the ultimate or “last” as future, philosophy as testament and cautionary note for maintaining the non-philosophical oeuvre as “future” or “utopian.” We will see that between these two dimensions it cradles a theory of struggle. In the end, this book envisions non-philosophers in multiple ways. It inevitably sees them as subjects of knowledge, most often academics insofar as life in the world demands, but above all as close relatives of three great human types. The analyst and political militant are quite obvious, for non-philosophy is close to psychoanalysis and Marxism insofar as it transforms the subject in transforming philosophy. Here again, one must have a sense not of certain nuances but of aspects (of the interpretations, albeit unilateralized) and not in order to construct a simple proletarization or militarization of thought as theory. To be rigorous, rather than authoritarian or spiteful, is its task. And lastly, non-philosophy is a close relative of the spiritual but definitely not the spiritualist. Those who are spiritual are not at all spiritualists, for the spiritual oscillate between fury and tranquil rage, they are great destroyers of the forces of Philosophy and the State, which are united under the name of Conformism. They haunt the margins of philosophy, gnosis, mysticism, science fiction and even religions. Spiritual types are not only abstract mystics and quietists; they are heretics for the World. The task is to bring their heresy to the capacity of utopia, and their utopia to the capacity of the paradigm. NOTES We will recognize allusions, and sometimes references, to closely related or distant themes, but which are related, in the work of Michel Henry, Alain Badiou and via the representative of “non-religious” gnosis of a Platonic origin, in Gilles Grelet. It goes without saying that these discussions are current and local, neither concerning the ensemble of doctrines nor prejudging the eventual evolution of certain amongst them. This concerns defining certain proximities with non-philosophy (rather than adversaries which in some sense they are) and typological and emblematic differends (rather than conflicts with a certain author). (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Procreative Liberty, Biological Connections, and MotherhoodMargaret Olivia Little (bio)Given the complex and dramatic array of issues currently facing us in reproductive ethics, bioethicists working on the topic might be forgiven feelings of trepidation when they cast their minds toward the next century. Currently, technologies such as artificial insemination by donor (AID), once the source of intense controversy, are used on a routine basis; mainstream newspapers carry advertisements offering (...) “excellent compensation” to ova “donors;” courts are arguing whether women who serve as gestational or “surrogate” mothers have any parental rights; and proposals resurface to jail pregnant women who take street drugs. Sorting out which developments are to be welcomed and which are to be resisted—and why—will require us not only to clarify some of our most basic value commitments, but also to reflect on our understanding of concepts, such as motherhood, that we previously had the luxury of thinking obvious. Let me highlight two issues I think we will be forced to confront as we try to navigate the ethics of reproduction into the twenty-first century—namely, the value of biological connection and the meaning of motherhood.Procreative Liberty and the Value of Biological ReproductionPeople who are unable to conceive a child or to carry one to term now face a variety of extraordinary means of procreative assistance: they can buy sperm and ova, undergo in vitro fertilization, or contract another woman to gestate and give birth to the baby. Those who are enthusiastic about these new technologies [End Page 392] and arrangements often explain their support in terms of many people’s deep desire or even right to bear children biologically related to them; those who are suspicious of the techniques often explain their resistance by criticizing our culture’s “pronatalist” emphasis on biological rather than social relations with children. Focusing on such clear-cut positions, though, undersells the complexity and difficulty of the issues involved. Few want to dismiss altogether the importance of biological connection; but the question remains, what measure of importance should it be granted? Or again, while most agree that procreative liberty is one of our most fundamental rights, the question remains, whose procreation, in what context, and by which means? The truly difficult questions, that is, pertain to how we are to value biological relatedness and how we are to draw the contours of procreative liberty.One perspective emerging in current debates urges an expansive answer to these questions, arguing that the new reproductive technologies and arrangements deserve constitutional protection. Procreative liberty is deeply important, it is urged, given how fundamental the decision to have or to refrain from having children is to our sense of dignity, identity, and meaning of life. But if we recognize a right to reproduce coitally, it is claimed, we should also recognize a right to reproduce noncoitally: people with infertile partners should no more be barred from exercising their right to “beget, bear, and raise” children biologically linked to them by using surrogate arrangements or AID than those who are blind should be barred from exercising their right to written information by using Braille texts. 1The fundamental question is whether the value of biological reproduction persists when pursued outside of the intimacies of marriage and family that form its traditional home. The new reproductive technologies and arrangements, after all, represent a departure not simply because they are noncoital but because they involve reproduction with strangers, under contract, and for pay. One question that demands our reflection, then, is whether the procreative liberty we value attaches to individuals atomistically, as it were, or to individuals only insofar as they are in relationships of an intimate and ongoing nature.Other developments on the horizon sound a restrictive note about procreative liberty. Many IVF clinics, for instance, have denied services to would-be single parents or to gay or lesbian couples. Some legislators have proposed making certain welfare payments for women conditional upon their use of contraceptives such as Norplant—an odd view if one regards procreative liberty as a fundamental right. After all, we do not usually make the receipt of public aid contingent on waiving a constitutional right. (Imagine the government stipulating that... (shrink)

This guide accompanies the following article(s): ‘Full Disclosure of the “Raw Data” of Research on Humans: Citizens’ Rights, Product Manufacturer’s Obligations and the Quality of the Scientific Database.’Philosophy Compass 6/2 (2011): 90–99. doi: 10.1111/j.1747‐9991.2010.00376.x Author’s Introduction Securing consent (and informed consent) from patients and research study participants is a key concern in patient care and research on humans. Yet, the legal doctrines of consent and informed consent differ in their applications. In patient care, the judicial doctrines of consent and informed (...) consent are disclosure doctrines based on the obligation of physicians to inform their patients of the following types of information: the nature of the procedure the physician is recommending in the patent’s care (P), the alternatives to the physician‐recommendation (A), and the risks of procedure and its alternatives (R). In addition, the physician must provide truthful answers to the patient’s questions (Q) to the best of the physician’s abilities. In research on humans, the onus of disclosure by study sponsors and principal investigators is much greater than in patient care precisely because the purpose of research is not patient care. The purpose of research is the identification and development of new generalizable knowledge. Thus, participation in a research study or trial may not benefit the study volunteer at all. In addition, the participant may carry a heavy risk burden in relationship to any testing of a newly designed drug or device as part of their experiences in the research study. Presently, despite the risks borne by the research study participant, the raw data collected from volunteers in research trials are treated by courts as if they were the private property of the study sponsor rather than generally owed to the public as would be expected by an effort like research participation aimed at contributing to the development of generalizable knowledge. This paper reviews the obligations that study sponsors owe to their study participants based on the very definition of research as a systematic activity whose purpose is to develop generalizable knowledge to help all humans. Author Recommends Court cases Canterbury v. Spence, United States Court of Appeals, District of Columbia Circuit 464 F.2d 772 (1972). (Federal appellate decision heard in the District of Columbia, USA) Reibl v. Hughes, 2 S.C.R. 880 (1980). (Supreme Court of Canada) Rogers v. Whitaker, 175 C.L. R. 479 (1992). (High Court of Australia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Canterbury v. Spence is the landmark Federal informed consent case in the United States heard in the District of Columbia. In this case, Judge Spottswood Robinson articulated the reasonable person standard of informed consent. This standard was subsequently adopted by the Supreme Court of Canada (Reibl v. Hughes, 2 S.C.R. 880 (1980)) and the High Court of Australia (Rogers v. Whitaker, 175 C.L. R. 479 (1992)). The House of Lords rejected the reasonable person standard in England in Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985). Book Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. This book is a detailed guide for the review of scientific and ethical aspects of research on humans contained in the research study protocols and research informed consent forms which need to be submitted by study sponsors and principal investigators to institutional review boards (IRBs) for IRB review before a research study can receive approval to be conducted within a human study population in those institutions over which the IRB has authority. It also presents basic definitions in the area of research on humans and basic approaches to help conduct a deep review of the underlying scientific and ethical issues that are present within a research study protocol and its accompanying research informed consent form. Report National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report: Ethical Guidelines for the Protection of Human Subjects of Research. Washington, DC: DHEW Publications, 1978 (78‐0012). This U.S. National Commission in the Belmont Report argued for the necessity of a reasonable volunteer standard in research on humans in the United States. Arguing that the professional standard and the reasonable person standard of consent and informed consent were insufficient to base a disclosure standard in research on humans, this National Commission developed the reasonable volunteer standard where a study participant is to be approached in research informed consent with that information that a reasonable volunteer would want to know. Online Materials Belmont Report: Syllabus Topics for Lecture and Discussion Week I: Introduction and Overview Readings: Rogers v. Whitaker, 175 C.L.R. 479 (1992). (High Court of Australia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Week II: The Different Standards of Consent and Informed Consent Readings: Canterbury v. Spence, 464 F.2d 772 (1972). (Federal appellate opinion heard in the District of Columbia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Week III: Definition of Research Reading: Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. (Especially Chapters 2 and 3) Week IV: How to Review a Research Study Protocol and Research Informed Consent Form Reading: Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. (Especially Chapters 4–6, 10, and 12–14) Week V: Obligations in Research of Humans Versus Patient Care Reading: National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report: Ethical Guidelines for the Protection of Human Subjects of Research. Washington, DC: DHEW Publications, 1978 (78‐0012). Focus Questions • How do the judicial doctrines of consent in England and Australia compare to the judicial doctrines of informed consent in the United States and Canada? • How does a professional standard of disclosure differ from a reasonable person standard of disclosure? • What is the definition of research? • How is a research study (study proposal and research informed consent form) reviewed from scientific and ethical bases for considerations of approval by an IRB? • How do the obligations of a study sponsor, a principal investigator, and a research team conducting a research trial on human study participants differ from the obligations of a physician caring for a patient? • Should all raw data of research derived from humans be made available to the public for use in developing generalizable knowledge to help others, or should raw data be considered the private property of the study sponsors (for example, prescription drug manufacturers), who fund the research trials? Seminar/project Idea Draw a timeline of the development of the basic concepts of consent and informed consent in patient care and in patient research. On this timeline, first place the dates of the key court cases in England, the United States, Canada, and Australia on consent and informed consent. Then place the date of the development of the Belmont Report. Why do differences exist between these four countries in terms of the legal requirements of informedness of a patient (in medical care) and a study participant (in medical research)? What roles if any do the concepts of self‐determination and self‐decision have in consent and informed consent in patient care and in informed consent in research on humans among the four countries of interest? What are the realities of research on human participants that require a new standard of informed consent, the reasonable volunteer standard, to be developed beyond the two standards in patient care, the professional standard, and the reasonable person standard? Counterpoint Arguments The following are counterpoint arguments that need to be appreciated to more fully understand the concepts that impact the thesis that ‘raw data’ should be open to the public to allow the opportunity of checking of the results of its associated scientific paper and for further analysis. De‐Identified (Anonymized) Raw Data A current approach to identifying (anonymizinig) raw data is based on the Health Insurance Portability and Accountability Act (HIPAA) of 1996 (P.L.104‐191). HIPAA was enacted by the U.S. Congress in 1996 to keep a person’s medical information private. In a research study, a person’s private medical information can become research data. HIPAA’s Privacy Rule allows a covered entity to de‐identify data by removing all 18 elements that could be used to identify the individual or the individual’s relatives, employers, or household members; these elements are enumerated in the Privacy Rule. The covered entity must also have no actual knowledge that the remaining information could be used alone or in combination with other information to identify the individual who is the subject of the information. Under this method, the identifiers that must be removed are the following: 1 Names. 2 All geographic subdivisions smaller than a state, including street address, city, county, precinct, ZIP Code, and their equivalent geographical codes, except for the initial three digits of a ZIP Code if, according to the current publicly available data from the Bureau of the Census: 2a. The geographic unit formed by combining all ZIP Codes with the same three initial digits contains more than 20,000 people. 2b. The initial three digits of a ZIP Code for all such geographic units containing 20,000 or fewer people are changed to 000. 3 All elements of dates (except year) for dates directly related to an individual, including birth date, admission date, discharge date, and date of death, and all ages over 89 and all elements of dates (including year) indicative of such age, except that such ages and elements may be aggregated into a single category of age 90 or older. 4 Telephone numbers. 5 Facsimile numbers. 6 Electronic mail addresses. 7 Social security numbers. 8 Medical record numbers. 9 Health plan beneficiary numbers. 10 Account numbers. 11 Certificate/license numbers. 12 Vehicle identifiers and serial numbers, including license plate numbers. 13 Device identifiers and serial numbers. 14 Web universal resource locators (URLs). 15 Internet protocol (IP) address numbers. 16 Biometric identifiers, including fingerprints and voiceprints. 17 Full‐face photographic images and any comparable images. 18 Any other unique identifying number, characteristic, or code, unless otherwise permitted by the Privacy Rule for re‐identification. Even though ‘raw data’ can be de‐identified (anonymized) so that there is no way to trace back the data to the study participant from which it was drawn, there are still questions whether the ‘de‐identified raw data’ can be given to other researchers or made public without the original study participant’s approval. It may be the case that this approval could be done at the start of any research study where the individual considering study participation would be counseled on what the process of de‐identification consists of and would be asked whether the participant would allow use of the data by other researchers or made available to the public in a de‐identified state. However, there may be questions of the study participants as to whether the data are truly de‐identified and untraceable back to the study participant since the participant would not be able to see the process actually being carried out in detail in all relevant circumstances. Using Raw Data in Context Simply being in possession of raw data is never enough to build on that data from a research perspective. Researchers need to understand the context of the scientific research study in which the data were collected. This research context includes (but is not limited to): (i) the scientific hypothesis of the research study, (ii) the inclusion and exclusion criteria selected by the research designers of the study to determine which study participants were included and which were excluded from the study, (iii) the methods used to collect the data and possibilities of errors in the data collection processes, and (iv) answers to questions regarding whether any data were excluded from the study data and why these data were excluded. Ownership Rights Over Data There are ownership rights over data. Ownership rights include court decision making related to the question which parties are to be considered as the owners of the data. Possible owners here include (but are not limited to) (i) the study sponsor whose only role was to fund that study, (ii) the principal investigator(s) who developed the scientific hypothesis, and (iii) individual study participants through special contracts made by individual participants who negotiate such contracts with study sponsors and principal investigators to share in the ownership of data. Examples of such data are participant sources of unique gene lines or unique cell lines to be used in future research. Objections to Data Sharing Finally, individual researchers may simply object to sharing data. A researcher’s arguments here may be simply stating that he or she has a right to fully analyze the data since the collection of the data was the researchers’ idea in the first place. These researchers may argue that they have the right to mine the data as fully as they can before deciding to make the data open to the public for others to analyze. Works Cited 1 Kaiser, J. ‘Making Clinical Data Widely Available.’Science 322.5899 (10 Oct. 2008): 217–8. 2 de Lusignan, S., J.F. Metsemakers, P. Houwink, V. Gunnarsdottir, and J. van der Lei. ‘Routinely Collected General Practice Data: Goldmines for Research? A Report of the European Federation for Medical Informatics Primary Care Informatics Working Group (EFMI PCIWG) from MIE2006, Maastricht, The Netherlands.’Informatics in Primary Care 14.3 (2006): 203–9. 3 Sim, I. ‘Human Studies Database Project’, CTSA Data Repositories Symposium (17 Oct. 2008). 23 Nov. 2010. 4 Sim, I., C.G. Chute, H. Lehmann, R. Nagarajan, M. Nahm, and R.H. Scheuermann. ‘Keeping Raw Data in Context.’Science 323.5915 (6 Feb. 2009): 713. 5 U.S. Department of Health and Human Services, National Institutes of Health, HIPAA Privacy Rule, Information for Researchers. 13 Nov. 2010. 6 Wilczynski, N.L., R.B. Haynes, and Hedges Team. ‘EMBASE Search Strategies for Identifying Methodologically Sound Diagnostic Studies for Use by Clinicians and Researchers.’BMC Medicine 29.3 (March 2005): 7. (shrink)

Genetic testing technologies are rapidly moving from the research laboratory to the market place. Very little scholarship considers the implications of private genetic testing for a public health care system such as Canada’s. It is critical to consider how and if these tests should be marketed to, and purchased by, the public. It is also imperative to evaluate the extent to which genetic tests are or should be included in Canada’s public health care system, and the impact of (...) allowing a two-tiered system for genetic testing. A series of threshold tests are presented as ways of clarifying whether a genetic test is morally appropriate, effective and safe, efficient and appropriate for public funding and whether private purchase poses special problems and requires further regulation. These thresholds also identify the research questions around which professional, public and policy debate must be sustained: What is a morally acceptable goal for genetic services? What are the appropriate benefits? What are the risks? When is it acceptable that services are not funded under health care? And how can the harms of private access be managed? (shrink)

Definition of the problemFrom an ethical point of view we analyse the ruling of the German Federal Joint Committee (Gemeinsamer Bundesausschuss, G‑BA) of September 2019 to revise the guidelines about the coverage of noninvasive prenatal tests (NIPT) by mandatory health insurance, in order to include them under specified conditions. The decision contains four essential elements: a definition of the aim of NIPT testing (to avoid invasive testing), a criterion of access (test must be “necessary” for the pregnant (...) woman to tackle her individual situation), statements about the process of decision-making (after counselling by a physician and case by case) and a normative contextualization (termination of pregnancy under § 218 a German penal law) which is to be found in its explanations. There are tensions in the proposed model that oscillate about two axes: (1) The suffering that results from a possible birth of a child with trisomy or from not knowing about the genetic condition of the fetus can ultimately only be evaluated subjectively, from the perspective of the pregnant woman. (2) The meaning of an individual decision in the case-by-case model remains unclear because when judging about individual cases general points of view also need to be considered. However, we argue that the model of the G‑BA could be a sociopolitically and ultimately also ethically defensible pragmatic solution, exactly because of its paradoxes and its inherent flexibility. (shrink)

We assert that audit quality can be improved to the extent that social norms for honesty and responsibility are activated in the auditor. To test this assertion, we use an experimental audit market setting found in the literature and manipulate factors expected to activate honesty and responsibility norms in the auditor. We find that auditor misreporting is reduced when the investor is another participant in the experiment rather than computer simulated, and thus, the interests of third-party investors are salient to (...) the auditor. We also find that auditor misreporting is reduced when the auditor is required to sign-off on the audit report, but only when the investor is another participant in the experiment. Consistent with our underlying theory, we find that pre-experimental measures of sensitivity to honesty and responsibility norms help explain the effects of our manipulated variables. Finally, we find that these measures of social norm sensitivity are associated with the moral judgment that auditor misreporting is unethical. Our study helps explain previous anomalous findings in the literature and answers the call in Blay et al. (J Bus Ethics 2017. doi:10.1007/s10551-016-3286-4) for empirical researchers to use social norm theory to develop stronger tests of moral reasoning in the market for auditing services. (shrink)

Do maximizers maximize across decision domains? An assumption underlying the literature on maximizing is that the tendency to strive to make the best choice spans domains. The current research provides a direct test of this assumption by examining the association between trait maximizing and domain-specific maximizing, consisting of maximizing measures in a wide range of decisions (consumer goods, services and experiences, and life decisions). Study 1 tested this association at two different time points in order to minimize common method bias. (...) Study 2 was a high-powered pre-registered cross-sectional replication. Results of both studies showed that trait maximizing was associated with higher maximizing tendencies across all three decision domains. However, in line with prior research suggesting that people generally maximize less in experiential than in material domains, trait maximizing was associated with maximizing in services and experiences significantly less than with maximizing in consumer goods or in life decisions. These results provide empirical support for a central tenet of maximizing theory and suggest useful directions for future research. (shrink)