The access to human pre‐implantation embryos that is afforded by procedures now developed for the treatment of infertility presents the possibility of very early prenatal diagnosis, before implantation in the uterus, of certain genetic diseases. Only the normal embryos would be replaced in the mother for initiation of implantation and pregnancy. Early experiments on a mouse model for Lesch‐Nyhan syndrome (HPRT‐deficiency) show that pre‐implantation diagnosis of genetic disease is feasible.

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)

While pre-implantation genetic diagnosis is available and legal in Malaysia, there is an ongoing controversy debate about its use. There are few studies available on individuals’ attitudes toward PGD, particularly among those who have a genetic disease, or whose children have a genetic disease. To the best of our knowledge, this is, in fact, the first study of its kind in Malaysia. We conducted in-depth interviews, using semi-structured questionnaires, with seven selected potential PGD users regarding their knowledge, attitudes and (...) decisions relating to the use PGD. The criteria for selecting potential PGD users were that they or their children had a genetic disease, and they desired to have another child who would be free of genetic disease. All participants had heard of PGD and five of them were considering its use. The participants’ attitudes toward PGD were based on several different considerations that were influenced by various factors. These included: the benefit-risk balance of PGD, personal experiences of having a genetic disease, religious beliefs, personal values and cost. The study’s findings suggest that the selected Malaysian participants, as potential PGD users, were supportive but cautious regarding the use of PGD for medical purposes, particularly in relation to others whose experiences were similar. More broadly, the paper highlights the link between the participants’ personal experiences and their beliefs regarding the appropriateness, for others, of individual decision-making on PGD, which has not been revealed by previous studies. (shrink)

Pre-Implantation Genetic Diagnosis represents the first fusion of genomics and assisted reproduction and the first reproductive technology that allows prospective parents to screen and select the genetic characteristics of their potential offspring. However, for some, the idea that we can intervene in the mechanisms of human existence at such a fundamental level can be, at a minimum, worrying and, at most, repugnant. Religious doctrines particularly are likely to collide with the rapidly advancing capability for science to make such interventions. (...) This paper focuses on opinions and arguments of selected religious scholars regarding ethical issues pertaining to PGD. In-depth interviews were conducted with religious scholars from three different religious organizations in the Klang Valley, Malaysia. Findings showed that Christian scholars are very sceptical of the long-term use of PGD because of its possible effect on the value of humanity and the parent-children relationship. This differs from Islamic scholars, who view PGD as God-given knowledge in medical science to further help humans understand medical genetics. For Buddhist scholars, PGD is considered to be new medical technology that can be used to save lives, avoid suffering, and bring happiness to those who need it. Our results suggest that it is important to include the opinions and views of religious scholars when it comes to new medical technologies such as PGD, as their opinions will have a significant impact on people from various faiths, particularly in a multi-religious country like Malaysia where society places high value on marital relationships and on the traditional concepts of family. (shrink)

Pre-implantation genetic diagnosis became well known in Malaysia after the birth of the first Malaysian ‘designer baby’, Yau Tak in 2004. Two years later, the Malaysian Medical Council implemented the first and only regulation on the use of Pre-implantation Genetic Diagnosis in this country. The birth of Yau Tak triggered a public outcry because PGD was used for non-medical sex selection thus, raising concerns about PGD and its implications for the society. This study aims to explore participants’ perceptions (...) of the future implications of PGD for the Malaysian society. We conducted in-depth interviews with 21 participants over a period of one year, using a semi-structured questionnaire. Findings reveal that responses varied substantially among the participants; there was a broad acceptance as well as rejection of PGD. Contentious ethical, legal and social issues of PGD were raised during the discussions, including intolerance to and discrimination against people with genetic disabilities; societal pressure and the ‘slippery slope’ of PGD were raised during the discussions. This study also highlights participants’ legal standpoint, and major issues regarding PGD in relation to the accuracy of diagnosis. At the social policy level, considerations are given to access as well as the impact of this technology on families, women and physicians. Given these different perceptions of the use of PGD, and its implications and conflicts, policies and regulations of the use of PGD have to be dealt with on a case-by-case basis while taking into consideration of the risk–benefit balance, since its application will impact the lives of so many people in the society. (shrink)

With pre-implantation genetic diagnosis (PGD), genetic testing and selective transfer of embryos is possible. In the future, germ-line gene therapy (GLGT) applied to embryos before implantation, in order to introduce missing genes or replace mutant ones, may be possible. The objective of this dissertation is to analyse moral aspects of these technologies, as described by eighteen British, Italian and Swedish gynaecologists and geneticists. The objective is systematised into three parts: research interviews and qualitative analysis, philosophical analysis, and elaboration (...) of a framework that supports the combination of analytic methods. PGD was described as positive since it enabled some couples at risk for a genetic disease to have a child without the disease. PGD was described as in different senses ‘better’ than methods for prenatal diagnosis and selective termination of pregnancy. It was also described as positive since it provided couples at risk with one more option, even if it did not result in the birth of a healthy child. However, interviewees were concerned about the difficulty of defining and evaluating genetic disease. They were also concerned about patients’ choices, and about exaggerated use or misuse. Whereas PGD gave rise to ambivalence in terms of how to understand, describe and evaluate it, GLGT was often described as unrealistic or undesirable. The results of the qualitative analysis are used in a philosophical analysis of the concepts of choice, autonomous choice, ambivalence, trust and ambivalence in trust relations. A set of distinct characteristics of each concept are elaborated. The results of the philosophical analysis are used in the discussion of the results of the qualitative analysis. The study shows that the technologies imply both ‘new’ ways to perform ‘old’ medical practices and ‘new’ practices. Old moral questions are reformulated. New moral questions are added. Against the background of this, the concept of genetic identity is discussed. Key words: empirical ethics, pre-implantation genetic diagnosis, germ-line gene therapy, qualitative research, philosophical analysis, medical progress, genetic disease, choice, autonomous choice, ambivalence, trust, genetic identity. (shrink)

Mouse pre‐implantation development appears to be under the control of paracrine and autocrine growth factors. The epithelium of the oviduct and the uterus together, with the population of macrophages and lymphocytes present in the reproductive tract from the onset of pregnancy, are thought to be the major sources of paracrine growth factors targeted to the developing embryos. Some of the growth factors are synthesized by both uterine epithelial cells and activated lympho‐hematopoietic cells, suggesting a partial overlap of the regulatory (...) signals used by the reproductive and lympho‐hematopoietic systems. Such growth factors may be the long sought‐after mediators of the synchrony between the pre‐implantation embryo and the sex‐steroid hormone‐induced changes in the uterus. (shrink)

Studies have shown that children vary in the trajectories of their language development after cochlear implant (CI) activation. The aim of the present study is to assess the preverbal and lexical development of a group of 20 Italian-speaking children observed longitudinally before CI activation and at three, 6 and 12 months after CI surgery (mean age at the first session: 17.5 months; SD: 8.3; and range: 10–35). The group of children with CIs (G-CI) was compared with two groups of normally-hearing (...) (NH) children, one age-matched (G-NHA; mean age at the first session: 17.4 months; SD: 8.0; and range: 10–34) and one language-matched (G-NHL;n= 20; mean age at the first session: 11.2 months; SD: 0.4; and range: 11–12). The spontaneous interactions between children and their mothers during free-play were transcribed. Preverbal babbling production and first words were considered for each child. Data analysis showed significant differences in babbling and word production between groups, with a lower production of words in children with CIs compared to the G-NHA group and a higher production of babbling compared to the G-NHL children. Word production 1 year after activation was significantly lower for the children with CIs than for language-matched children only when maternal education was controlled for. Furthermore, latent class growth analysis showed that children with CIs belonged mainly to classes that exhibited a low level of initial production but also progressive increases over time. Babbling production had a statistically significant effect on lexical growth but not on class membership, and only for groups showing slower and constant increases. Results highlight the importance of preverbal vocal patterns for later lexical development and may support families and speech therapists in the early identification of risk and protective factors for language delay in children with CIs. (shrink)

Like any philosophically interesting health care practice, ethical analysis of Pre-implantation Genetic Diagnosis has produced a wide range of moral positions. For example, one might contrast David King's view that warns PGD should be strictly limited and regulated because it will soon result in the expansion of a troubling "laissez-faire eugenics" with Julian Savulescu's argument for the "principle of procreative beneficence" morally requiring parents to use information attained through PGD to select the "best child". That is, these authors represent (...) two poles of a sort of moral spectrum regarding PGD. At one end, we have a deep suspicion of the technology as directly leading to... (shrink)

In Germany the question whether to uphold or repeal the judicial prohibition on Pre-implantation Genetic Diagnosis is being debated from quite different standpoints. This paper differentiates the major arguments according to their reasons as a) moral, b) evaluative , and c) legal. The arguments for and against PGD can be divided by content into three groups: arguments relating to the status of the embryo, focusing on individual actions in the implementation of PGD, and relating to the foreseeable or probable (...) consequences of PGD.In Germany, from a legal perspective, the status of the embryo does not permit the intervention of PGD; from a purely moral perspective, a prohibition on PGD does not appear defensible. It remains an open question, however, whether the moral argument permitting PGD should be restricted for evaluative reasons. The paper discusses the species-ethical reasons, for which Jürgen Habermas sees worrisome consequences in the wake of PGD to the extent that we comprehend it as the forerunner of a ‘positive eugenics’. It would so disrupt the natural preconditions of our universal morality. The question of whether to prohibit or allow PGD is not merely a question of simple moral and/or legal arguments, but demands a choice between evaluative, moral and species-ethical arguments, and the question remains open. (shrink)

This book investigates the issue of “pure selection”–that is, choosing the genetic characteristics of one's children, without using abortion as the method to achieve this. Pure selection is made possible by the relatively new technology of preimplantation genetic diagnosis (PGD), in conjunction with now-routine IVF procedures for creating embryos. In PGD, a cell or cells can be extracted from an early embryo, and be subjected to genetic diagnosis of whatever kind, without damaging the embryo. So embryos with the genetic make (...) up favoured by the parents-to-be can be identified and transferred to the uterus, whilst those with non-favoured genetic make up can be discarded. Hence choice about the genetic characteristics of children is achieved without recourse to invasive procedures for prenatal diagnosis, and without termination of pregnancy, which is not only physically invasive, but also ethically controversial. The author firstly presents a case study of the events involved in the …. (shrink)

The primary question to be addressed here is whether pre-implantation genetic diagnosis (PGD), used for both negative and positive trait selection, benefits potential supernumerary embryos. The phrase ‘potential supernumerary embryos’ is used to indicate that PGD is typically performed on a set of embryos, only some of which will be implanted. Prior to any testing, each embryo in the set is potentially supernumerary in the sense that it may not be selected for implantation. Those embryos that are not (...) selected, and hence destroyed or frozen, are ‘actually supernumerary’. The argument to be advanced is hypothetical: If embryos may be said to benefit or be harmed by our actions, then PGD used to select for an embryo or embryos with the highest expected Wellbeing benefits potential supernumerary embryos. The argument shows that the ‘non-identity’ problem is not sufficient to show that eugenic selection does not benefit supernumerary embryos. (shrink)

Jürgen Habermas’s recent book Die Zukunft der menschlichen Natur (2001) is discussed. Particular attention is paid to the central argument concerning the adverse effects the general acceptance of cloning and pre-implantation genetic diagnostics (PGD) would have on the moral and political self-understanding of present and future generations. The argument turns to a critique of Habermas’s central arguments against PGD, and develops at least two arguments that are in harmony with his general defense of procedural democracy and deontological morality. Appeal (...) is made to Peter Singer and John Rawls to develop arguments that do not reject either PGD or genetic engineering and that are nonetheless in full compliance with the spirit of political modernity, as it is defended and defined by Habermas. The conclusion calls for less moralizing and more political-economic critique of the biotechnologies unleashed by the information revolution. (shrink)

Issues surrounding human embryos are poignant and profound. Should research be conducted on them? Should they be discarded? Should they be donated to infertile couples? The Warnock Report was a landmark in providing guidelines limiting experimentation on human embryos to the first 14 days after fertilization, at which time implantation of the embryo is complete and the primitive streak has appeared.2 However, these embryological features were not considered sufficiently distinctive to bestow upon this 14‐day period a separate classification. This (...) situation changed when, in 1986, Anne McLaren suggested the use of the terms ‘pre‐embryo’ or ‘conceptus' to designate “the entire product of the fertilized egg up to the end of the implantation stage” and the term ’embryo‘ for “that small part of the pre‐embryo or conceptus, first distinguishable at the primitive streak stage, that later develops into the foetus.”3 In this paper we look critically at the term ‘pre‐embryo’, and we shall present the case for an alternative set of terms, namely, embryo‐placenta and embryo‐fetus. We consider this latter to be biologically‐based terminology, that does not have any connotation of restricted moral value as the term pre‐embryo does for some. (shrink)

A recent article on the front page of The Independent (September 18, 2015) reported that the genetic ‘manipulation’ of IVF embryos is to start in Britain, using a new revolutionary gene-editing technique, called Crispr/Cas9. About three weeks later (Saturday 10, October 2015), on the front page of the same newspaper, it was reported that the National Health Service (NHS) faces a one billion pound deficit only 3 months into the new year. The hidden connection between these reports is that gene (...) editing could be used to solve issues related to health care allocation. Improving the health of future generations might coincide with public health goals; it might improve the health of individuals and communities, and, if successful, might be seen as a public good. However, enhancing future generations will require In Vitro Fertilisation and Pre-implantation Genetic Diagnosis. Remarkably, the necessary involvement of women in an enhancing scenario has not been discussed by its proponents. The present discourse on moral obligations of future generations, although not referring to women, seems to imply that women might be required, morally, if not legally, to reproduce with IVF. Enhancing future generations will be gendered, unless the artificial womb is developed. These are challenging issues that require a wider perspective, of both women and men. Despite the lack of a unified feminist conclusion in the discussions about the merits and risks of human genome modification, there is an urgent need to clarify the role of women in this scenario. (shrink)

Is it right to use pre-implantation genetic diagnosis to select an embryo free of the gene for early-onset Alzheimer’s disease?A 30 year old woman with the gene for early-onset Alzheimer’s disease, who seems certain to develop the disease by the time she is 40, has used IVF and preimplantation genetic diagnosis to select an embryo that is free of the mutant gene. The woman, a geneticist, has given birth to a mutation-free child. This marks the first time that preimplantation (...) genetic diagnosis has been used to “weed out” an embryo with the defect.1–3Early-onset Alzheimer’s is an inherited, incurable disease striking people …. (shrink)

Until the 19th and 20th century, philosophers, theologians, and lawmakers were uncertain at exactly which moment an embryo was to be fully considered a human individual. The modern natural scientists have made clear that an embryo is an individual human being as soon as the egg and the sperm cell have fused. Taking this into account the article discusses current problems of dealing with embryos. It focuses on the ethical problems created by pre-implantation diagnosis and human germline engineering. The (...) author believes that under certain conditions it is ethically justifiable to use preimplantation diagnosis with embryos. (shrink)

In this paper I argue that the account of deliberative democracy advanced by Amy Gutmann and Dennis Thompson (1996, 2004) is a useful normative theory that can help enhance our deliberations about public policy in morally pluralistic societies. More specifically, I illustrate how the prescriptions of deliberative democracy can be applied to the issue of regulating non-medical uses of pre-implantation genetic diagnosis (PGD), such as gender selection. Deliberative democracy does not aim to win a philosophical debate among rival first-order (...) theories, such as libertarianism, egalitarianism or feminism. Rather, it advances a second-order analysis that strives to help us determine what would constitute a reasonable balance between the conflicting fundamental values that arise in the context of regulating PGD. I outline a theoretical model (called the Reasonable Genetic Intervention Model) that brings these issues to the fore. Such a model incorporates the concern for both procedural and substantive principles; and it does so in way that takes provisionality seriously. (shrink)

John Harris criticises the European Parliament’s ‘waft in the direction of human rights and human dignity’ and rejects its suggestion that ‘human cloning violates the principle of equality since “it permits a eugenic and racist selection of the human race”’. He argues that, by parity of reasoning, so too do ‘pre-natal and pre-implantation screening, not to mention egg donation, sperm donation, surrogacy, abortion and human preference in choice of partner’. Conflating the techniques mentioned (ie, human cloning, egg donation, etc) (...) with human preference in choice of a partner, he holds that reproductive liberty must be the operative principle in determining what ought to be prohibited by law in the realm of human reproduction. This article challenges his two problematic assumptions. (shrink)

Public attention on embryo research has never been greater. Modern reproductive medicine technology and the use of embryos to generate stem cells ensure that this will continue to be a topic of debate and research across many disciplines. This multidisciplinary book explores the concept of a 'healthy' embryo, its implications on the health of children and adults, and how perceptions of what constitutes child and adult health influence the concept of embryo 'health'. The concept of human embryo health is considered (...) from preconception to pre-implantation genetic diagnosis to recent foetal surgical approaches. Burgeoning capacities in both genetic and reproductive science and their clinical implications have catalysed the necessity to explore the concept of a 'healthy' embryo. The authors are from five countries and 13 disciplines in the social sciences, humanities, biological sciences and medicine, ensuring that the book has a broad coverage and approach. (shrink)

This article analyzes the main reasons offered by the literature in relation to the question of whether pre-implantation genetic diagnosis and selection should be allowed in the context of assisted reproduction techniques to avoid the birth of children with disabilities. The bioethical literature faces a challenge from the disability discourse. When the oppressive social dimension of disability is taken into account, it results in a series of questions that could challenge the most settled conclusions of the bioethical debate. However, (...) the social model has not been without criticism and one of them, the underestimation of the importance of biological traits origin against a disability of social origin, resonates particularly in the debate on preimplantation genetic selection. (shrink)

The rationale for pursuing the development and use of Germ-Line selection and modification techniques is examined in this essay. The argument is put forth that it is the moral obligation of the medical profession to make available to the public any technology that can cure or prevent pathology leading to death and disability, in both the present and future generations. Society should pursue the development of strategies for preventing or correcting, at the Germ-Line level, genetic features that will lead to, (...) or enhance, pathological conditions. Because prenatal screening and even early embryo screening and selection can prevent only a subset of known genetic disorders, direct genetic intervention is the only way in which certain couples can exercise their rights to reproductive health. Finally, the arguments most often raised against the pursuit of and use of methods for Germ-Line intervention shall be discussed. Keywords: Germ-Line therapy, pre-implantation embryo screening gamete modification, risk and uncertainty CiteULike Connotea Del.icio.us What's this? (shrink)

Since the early 1990s, one of the most prominent objections to the use of prenatal or pre-implantation testing to prevent the birth of children with disabilities has focused on the negative judgments it expresses to and about existing persons with disabilities. Commonly known as the expressivist objection, it is based on the conjunction of two key claims: (1) the use or provision of tests to select against disability in offspring expresses negative judgments about existing persons with disabilities; and (2) (...) the expression of these judgments itself constitutes a wrong to those persons. Despite depending on both claims, however, philosophical discussion of the expressivist objection has largely centred on the first: while commentators continue to debate whether disability screening does or does not express negative judgments, relatively little attention has been paid to explaining how the expression of those judgements wrongs persons with disabilities. In this paper, I argue both that whether or not the expressivist objection succeeds will ultimately depend on whether a plausible explanation can be supplied for how persons with disabilities are wronged by the expression of negative judgments, and that the existing literature surrounding relational egalitarianism can provide such an explanation, albeit with important limitations. (shrink)

Only in recent years have the German bioethical and biopolitical debates begun to decline due to rationalization concerning stem cell research or the pre-implantation diagnosis related to the ethical status of the beginning of human life. This is due to the fact that in these contexts we have to ask whether quality of life assessment is ethically acceptable in principle. A fundamental premise in the current debate is that quality of life assessment and human dignity are incompatible. In this (...) paper four different standards of quality of life assessment are distinguished (the naturalistic, the social, the interpersonal and the personal standard). Then an interpretation of human dignity is developed which rests on the essential feature of human beings to develop the capacity for personal autonomy. Finally it is argued that human dignity in this sense is compatible with quality of life assessments based on the personal and the interpersonal standard. (shrink)

The author draws on his own experience of helping to make and deliver public policy to indicate the wider context in which ethical decisions have to be made: the law, contested interpretations of the law which have to be settled in the courts, and wider political and economic factors. He argues that the concept of respect for the early embryo does have substance because of the strict regulatory regime of the Human Fertilisation and Embryology Authority (HFEA). He considers the arguments (...) that the early embryo ‘[e]njoys the full rights of the human being and should be accorded respect owed to a human being’. He concludes that these arguments are not finally convincing. He also looks at the moral status of the early embryo in Christian tradition and argues that perhaps from the fourth and certainly from the seventh century in the West until 1869, offences against the early embryo were regarded as less serious than offences against the embryo when developed further. For these reasons he concludes that there should be no absolute prohibition against research on an early embryo up to fourteen days. He also looks at recent cases involving pre-implantation diagnosis (PGD) and tissue typing with a view to obtaining matching tissue from an early embryo for a sibling suffering from a life-threatening disease. Although a distinction has been made between what might be licit in the case of a genetic disorder in the sibling but illicit if the disorder is not genetic, he argues that it could be in the best interests of the early embryo, the child that is to be, if in either case if it was selected with a view to matching the tissue of a sibling. (shrink)

The present article describes and critically evaluates the medical/social distinction as used in the context of embryo selection through pre-implantation genetic diagnosis . According to such a distinction, while embryo selection for medical purposes, for example preventing the birth of a child with severe genetic disease, may be ethically justified, screening and the selection of embryos for social reasons, such as the implantation of an embryo of specific gender or one that carries the gene responsible for intelligence, should (...) not be allowed. The article challenges the automatic and repeated use of such a distinction in ethical debates concerning PGD. It is argued that existing justifications for the medical/social distinction seem not to support the conclusion that such a distinction should determine whether embryos should be returned for implantation or misused by genetic parents in a conclusive way. The article further analyzes alternative proposals to the medical/social distinction in light of which embryo selection should be ethical, and concludes with the author’s own proposal for ethical reasoning in the area of embryo selection. Under such a proposal, any embryo selection that would, on balance, increase the variety of potential life plans for the future child from which he or she will be able to choose is prima facie ethically justifiable. (shrink)

Can Rawlsian public reason sufficiently justify public policies that regulate or restrain controversial medical and technological interventions in bioethics (and the broader social world), such as abortion, physician aid-in-dying, CRISPER-cas9 gene editing of embryos, surrogate mothers, pre-implantation genetic diagnosis of eight-cell embryos, and so on? The first part of this essay briefly explicates the central concepts that define Rawlsian political liberalism. The latter half of this essay then demonstrates how a commitment to Rawlsian public reason can ameliorate (not completely (...) resolve) many of the policy disagreements related to bioethically controversial medical interventions today. The goal of public reason is to reduce the size of the disagreement by eliminating features of the disagreement that violate the norms of public reason. The norms of public reason are those norms that are politically necessary to preserve the liberal, pluralistic, democratic character of this society. What remains is reasonable disagreement to be addressed through normal democratic deliberative processes. Specific issues addressed from a public reason perspective include personal responsibility for excessive health costs, the utility of a metaphysical definition of death for organ transplantation, and the moral status of excess embryos generated through IVF and/or their use in medical research. (shrink)

Three-way baby making is not new: genetic surrogacy existed in Biblical times and donor insemination was recorded in Britain over 200 years ago. However, the gift of gametes between women breaks all social conventions. This paper examines the phenomenon of gamete-donation questioning whether a ‘gift’ of such magnitude can ever be ‘free’ (as the Human Fertilisation & Embryology Authority advocates), or a ‘true’ gift (in Derridian terms). Exploration of this unprecedented ‘gift’ from a psychoanalytic approach is supplemented by an interdisciplinary (...) one, drawing on the gift literature in philosophy, anthropology, ethnography and socioeconomics, as well as neonatal research and reproductive medicine. Critics note the dearth of analyses that take seriously the psychological ramifications of contemporary treatments, protocols and expectations in reproductive medicine. Based on psychoanalytic therapy within a clinical practice devoted to reproductive issues, the author argues that institutionalised asexual reproduction alters unconscious conceptualisations of the act of procreation – converting the passionate intimacy of primal scene into a clinical coupling of gametes in a mechanised arena. The author argues that, too charged to contemplate, the gamete's transcendent quality and blurring of elementary personae/res distinctions leads protagonists, including professionals, to defensive commodification. Multiple emotional meanings are ascribed to gifted gametes by each in the triangle of donor, recipient and offspring, illustrated here with verbatim material. This article addresses some of the far-reaching socio-political consequences for class, race, age, gender and sexuality of asexual reproduction, related to selection procedures and uneven global and local distribution of fertility treatment and its cost in financial, physical, practical and emotional terms. Similarly, feminist unease over (patriarchal) reproductive control and gatekeeping policies are considered, as well as ethical concerns over genetic manipulation, pre-implantation screening, sex selection, selective foetocide and potential exploitation of transnational donors and surrogates. (shrink)

Bakgrunn: Preimplantasjonsgenetisk diagnostikk er en genetisk undersøkelse av befruktede egg før de settes inn i livmoren i forbindelse med assistert reproduksjon. Hensikten med PGD er å unngå at det fremtidige barnet får en alvorlig arvelig sykdom, og at par som på grunn av arvelig sykdom har vansker med å få barn, kan få avkom. PGD er kontroversielt og et sentralt tema for den pågående vurderingen og revisjonen av bioteknologiloven.Metode: Paradoksteori anvendes for å identifisere og analysere noen av kontroversene ved PGD. (...) Det skilles mellom tilsynelatende paradokser, antinomier og aporier. Materialet er offentlige dokumenter, debattinnlegg og faglitteratur.Resultater: Det finnes en rekke tilsynelatende paradokser på PGD-ens område, slik som at PGD gjøres selv om det er svært liten sannsynlighet for at det blir født et alvorlig sykt barn, og at det gjøres PGD for mindre alvorlige sykdommer når forutsetningen for PGD er alvorlig arvelig sykdom. Samtidig finnes det også antinomier: At PGD gir rett til helsehjelp uten at det eksisterer noen pasient, og at PGD gjennomføres selv ved høye kostnader og lav suksessrate. Om embryoet og fosteret har moralsk status og rett på beskyttelse, synes å utgjøre en apori.Konklusjon: Å formulere moralske utfordringer som paradokser kan være en fruktbar måte å tydeliggjøre utfordringer og motsetninger på. Dessuten kan det styre innsatsen: Vi bør bestrebe oss på å rydde opp i tilsynelatende paradokser, jobbe hardere med grunnlagsutfordringene ved antinomier og til en viss grad akseptere motsetningene ved aporiene.Nøkkelord: Preimplantasjonsgenetisk diagnostikk, paradoks, antinomi, aporiEnglish summary: PGD's ParadoxesBackground: Pre-implantation genetic diagnosis is a genetic test of embryos before implantation as part of in vitro fertilization. The purpose of using PGD is to help people avoid having children with serious genetic disease and to help those with genetically based infertility to have children. PGD has been controversial and is assessed as part of the revision of the Norwegian biotechnology act.Method: Paradox theory is used to identify and analyse controversies with PGD. It distinguishes between resolvable paradoxes, antinomies and aporias. The material comprises official documents, public debates, and professional publications.Results: Many resolvable paradoxes are identified with PGD, such as that PGD is done even in cases where there is very little chance that a seriously ill child will be born and in case of diseases that are not considered to be «serious inheritable disease,» as required by the law. At the same time, there are antinomies: PGD is subsumed within a patient's rights even if there is no patient, and PGD is done even when the success rate is low and the expenses are high. Whether the embryo and the foetus have a right to protection appears to be an aporia.Conclusion: Analysing moral problems in terms of paradoxes may be a fruitful way of displaying challenges and conflicts. Moreover, it may give focus and direction to our endeavours. That is, we should try to resolve the resolvable paradoxes and work harder with the conflicts of the antinomies, and, to a certain extent, to accept the antagonisms of the aporias. (shrink)

Traditional ethical theories have paradoxical implications in regards to questions concerning procreation and our moral duties to future people. It has been suggested that the crux of the problem resides in an all too ‘impersonal’ axiology and that the problems of population axiology can be solved by adopting a ‘Person Affecting Restriction’ which in its slogan form states that an outcome can only be better than another if it is better for people. This move has been especially popular in the (...) context of medical ethics where many of the problems of population axiology are actualized. Examples are embryo or egg selection, pre-implantation genetic testing, assisted reproduction programmes, abortion, just to mention a few. I discuss a number of different interpretations of the Restriction and in particular one interpretation which I call Comparativism. According to this view, we should draw a distinction between uniquely and non-uniquely realizable people. The former people only exist in one out of two possible outcomes, whereas the latter exist in both of the compared outcomes. The idea is that we should give more weight to the well-being of non-uniquely realizable people or take it into account in a different way as compared to the well-being of uniquely realizable people. I argue that the different versions of the Person Affecting Restriction and Comparativism either have counterintuitive implications of their own or are compatible with traditional theories such as Utilitarianism. (shrink)

In vitro fertilization (IVF) involves making embryos outside of the human body, which has spurred debate about the status of the embryo, embryo research and donation. We explore couples’ perceptions about embryos and their thoughts and acceptability about various disposition decisions in Norway. Based on an ethnographic study including interviews and observations in an IVF clinic, we show that couples do not perceive their pre-implantation IVF embryos to be human lives; rather, they consider successful implantation the start of (...) life. We suggest that this response indicates a change in the perception of the human embryo or the fertilised egg fromincipient life—a viewpoint that was dominant in the discussions of embryo research in the 1980s and 1990s. We also show how this view of the pre-implantation embryo elucidates why donating embryos to research appears acceptable but donating to other infertile couples seems rather difficult. Before transfer to a woman’s uterus, the embryo exists in a liminality; it is not yet human life but a living cell with potential for both researchandpregnancy. When an embryo is implanted and pregnancy is confirmed, human life activates; the embryo becomes potential kin, influencing couples’ struggles with donating embryos to other couples. (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 lieu of an abstract, here is a brief excerpt of the content:Kennedy Institute of Ethics Journal 11.3 (2001) 219-220 [Access article in PDF] Introduction In the last couple of decades,commodification has become almost a buzz-word in bioethics. As we become technically more adept at detaching elements of human bodies and making use of them for others, it seems as if more and more things-from motherhood to gametes to kidneys to our very DNA-can be borrowed, rented, bought, and sold. Other (...) technology allows us unprecedented influence over the characteristics of our offspring (unprecedented, that is, if we ignore the many cultures in which children were and are routinely discarded because they are the wrong sex, disabled, or the product of multiple births). It is common, for example, for writers to worry that the availability of pre-implantation genetic diagnosis will seduce parents into thinking of their children as commodities, to be ordered in much the same way as automobiles, with the inevitable concomitant that they will want to "return" children who do not measure up to their specifications.Unfortunately, a great deal of the talk about "commodification" has been clumsy and sloppy. The term has been used as a magic bullet, as if saying "But that's commodification!" is the same as having made an argument. In fact, commodification of human persons, human bodies, human labor, human relationships, is a complex matter. In many human dealings, commodified and noncommodified understandings of the same thing, or the same transaction, exist more or less comfortably together. Most Westerners condemn commercial sex, for example, while at the same time knowing that in most times and places in the world, marriage was and is thought of as primarily an economic relationship. The common use of "cheap" in post-World War II American slang to describe a teenage woman who is more sexually available than her peers perfectly captures the market rhetoric inherent in respectable American sexual mores.Given this complexity, it is not surprising that many writers in bioethics have gravitated to the work of Margaret Jane Radin. In her two books, Contested Commodities (Harvard University Press, 1996) and Reinterpreting Property (University of Chicago Press, 1993), and many articles, [End Page 219] Radin has taken on the problem of commodification without falling into either sentimentality or cynicism. She is a careful thinker and a careful (and demanding!) writer. We have long valued her work as we have sought to grapple with the many ways in which the problem of commodification arises in bioethics. In this issue of the Kennedy Institute of Ethics Journal, entitled "Who's Afraid of Commodification?," we have asked three colleagues to join us in reflecting on aspects of the problem of commodification in bioethics. We are especially delighted that Radin agreed to respond to our efforts in this direction.Lisa Sowle Cahill takes the discussion of commodification to a new level, as she focuses on global ethics, especially genetic research and the marketing and accessibility of pharmaceuticals. Dena S. Davis explores the debates over refusal of treatment and rational suicide and concludes that to put a value on particular pieces of one's lifespan does not necessarily lead to negative aspects of commodification. Ronald M. Green analyzes Radin's use of Kant. Suzanne Holland addresses commodification of body parts, from gametes to cadaveric tissue, and concludes with some specific recommendations. Thomas A. Shannon takes a fresh look at the problem of whether we should allow the sale of organs; he shares with Holland a special concern for the rhetoric of commodification. Finally, Margaret Jane Radin responds to the preceding essays, asking four "stubbornly difficult" questions, questions that show that the debate about commodification is only just begun. Dena S. Davis and Suzanne Holland... (shrink)

The purpose of this article is to investigate how cultural meanings associated with the left ventricular assist device inform acceptance and experience of this innovative technology when it is used as a destination therapy. We conducted open-ended, semistructured interviews with family caregivers and patients who had undergone LVAD-DT procedures at six U.S. hospitals. A grounded theory approach was used for the analysis. Thirty-nine patients and 42 caregivers participated. Participants described a sense of obligation to undergo the procedure because of its (...) promise for salvation. However, once the device was implanted, patients described being placed into a liminal state of being neither sick nor healthy, with no culturally scripted role. Consideration of end-of-life decisions was complicated by the uncertainties about how patients with LVADs die. Pre-implantation communications among patient, family, and clinicians should take into account the impact of the technology on meaning, identity, and patient experience. (shrink)

This essay re-examines the disability critique of prenatal and pre-implantation screening in light of evidence about the larger context in which fertility and reproductive healthcare is rendered in the U.S. It argues that efforts to identify acceptable criteria for trait-based selection or otherwise impose reasons-based limitations on reproductive choice should be avoided because such limitations tend to perpetuate the discrimination encountered by adults with disabilities seeking fertility and reproductive health services.

The routinization of prenatal diagnosis is the source of bioethical and policy debates regarding choice, autonomy, access, and protection. To understand these debates in the context of cultural diversity and moral pluralism, we compare Israel and Germany, focusing on two recent repro-genetic “hot spots” of such policy-making at the beginning of life: pre-implantation genetic diagnosis and non-invasive prenatal genetic testing, two cutting-edge repro-genetic technologies that are regulated and viewed very differently in Germany and Israel, reflecting different medicolegal policies as (...) well as public and bioethical considerations. First, we compare policy-making in the context of PGD for HLA typing, used to create sibling donors, approved in Israel under specific conditions while prohibited in Germany. Second, we compare policy-making in the context of NIPT, which came under fire in Germany, while in Israel there has been little public debate about it. Both countries justify their contrasting policies as reflecting a concern for the well-being and care of the embryo/child, thus highlighting different concepts of embryo/child protection, autonomy, family relations, and the impact of religion and history on the promotion/protection of life. We use the juxtaposition of PGD and NIPT to highlight some inconsistencies in policies concerning the protection of extra- and intra-corporeal embryos. We conclude by drawing on the comparison to show how national variations exist alongside co-evolution. (shrink)

A good part of the explanation for differences in happiness has to do with genetics. This chapter reviews the scientific data relevant to a heritable component to happiness, and the prospects for using current and future technologies to alter those who have not won the genetic lottery. The chapter looks at the concept of heritability, and then at the heritability of happiness. The notion of heritability is typically seen as a composite of two factors: genetics and the environment. Three promising (...) technologies could be used to change the biological basis of happiness: pre‐implantation genetic diagnosis (PGD), genetic engineering, and advanced pharmacology. Unfortunately, on enhancing the moods of healthy individuals, there is limited research. The fact that two thirds of these “normal and healthy” volunteers felt “better than well” sounds like good news for happy‐people‐pills. The chapter touches upon the paucity of studies of the effects of antidepressants on healthy individuals. (shrink)

Germany is an interesting case with respect to the governance of reprogenetics. It has a strong profile in the technosciences and high aims regarding the global bioeconomy, yet her regulation of human genetics, reproductive medicine and embryo research has for a long time been rather restrictive. German biopolitical exceptionalism has often been explained by reference to Catholicism and the legacy of the Nazi past. The Germans, so goes the common story, have learnt the lessons of history and translated them into (...) unconditional respect for human dignity, which in turn translates into unconditional protection of human life, including the human embryo, and the firm repudiation of any eugenic distinction between ‘life worth to live’ and ‘life not worth to live’. This, however, is not the whole story. Alongside deontological strictness we find another strand of governing body politics and reprogenetics in Germany, the rule-and-exception model, running from the mid-1970s abortion law via the 2002 Stem Cell Act to the 2011 regulation of pre-implantation genetic diagnosis. In contrast to the former, that strongly draws on Kant and his concept of human dignity, the latter bears resemblances to Carl Schmitt's concept of state of exception. The article will show that the rule-and-exception model builds the exception into the rule and transforms the meaning and mandate of ethics, namely from safeguarding ethical standards to deciding about the exception. Given that the exception has now tended to become the rule, the question is whether the lessons of history will govern German reprogenetics for much longer. (shrink)

In The Future of Human Nature, Jürgen Habermas raises the question of whether the embryonic genetic diagnosis and genetic modification threatens the foundations of the species ethics that underlies current understandings of morality. While morality, in the normative sense, is based on moral interactions enabling communicative action, justification, and reciprocal respect, the reification involved in the new technologies may preclude individuals to uphold a sense of the undisposability of human life and the inviolability of human beings that is necessary for (...) their own identity as well as for reciprocal relations. Engaging with liberal bioethics and Catholic approaches to bioethics, the article clarifies how Habermas’ position offers a radical critique of liberal autonomy while maintaining its postmetaphysical stance. The essay argues that Habermas’ approach may guide the question of rights of future generations regarding germline gene editing. But it calls for a different turn in the conversation between philosophy and theology, namely one that emphasizes the necessary attention to rights violations and injustices as a common, postmetaphysical starting point for critical theory and critical theology alike. In 2001, Jürgen Habermas published a short book on questions of biomedicine that took many by surprise.[1] To some of his students, the turn to a substantive position invoking the need to comment on a species ethics rather than outlining a public moral framework was seen as the departure from the “path of deontological virtue,”[2] and at the same time a departure from postmetaphysical reason. Habermas’ motivation to address the developments in biomedicine had certainly been sparked by the intense debate in Germany, the European Union, and internationally on human cloning, pre-implantation genetic diagnosis, embryonic stem cell research, and human enhancement. He turned to a strand of critical theory that had been pushed to the background by the younger Frankfurt School in favor of cultural theory and social critique, even though it had been an important element of its initial working programs. The relationship of instrumental reason and critical theory, examined, among others, by Max Horkheimer, Theodor W. Adorno, and Herbert Marcuse and taken up in Habermas’ own Knowledge and Interest and Theory of Communicative Action became ever-more actual with the development of the life sciences, human genome analysis, and genetic engineering of human offspring. Today, some of the fictional scenarios discussed at the end of the last century as “science fiction” have become reality: in 2018, the first “germline gene-edited” children were born in China.[3] Furthermore, the UK’s permission to create so-called “three-parent” children may create a legal and political pathway to hereditary germline interventions summarized under the name of “gene editing.”In this article, I want to explore Habermas’ “substantial” argument in the hope that philosophy and theology become allies in their struggle against an ever-more reifying lifeworld, which may create a “moral void” that would, at least from today’s perspective, be “unbearable”, and for upholding the conditions of human dignity, freedom, and justice. I will contextualize Habermas’ concerns in the broader discourse of bioethics, because only by doing this, his concerns are rescued from some misinterpretations.[1] Jürgen Habermas, The Future of Human Nature.[2] Ibid., 125, fn. 58. 8[3] Up to the present, no scientific publication of the exact procedure exists, but it is known that the scientist, Jiankui He, circumvented the existing national regulatory framework and may have misled the prospective parents about existing alternatives and the unprecedented nature of his conduct. Yuanwu Ma, Lianfeng Zhang, and Chuan Qin, "The First Genetically Gene‐Edited Babies: It's “Irresponsible and Too Early”," Animal Models and Experimental Medicine ; Matthias Braun, Meacham, Darian, "The Trust Game: Crispr for Human Germline Editing Unsettles Scientists and Society," EMBO reports 20, no. 2. (shrink)

The development of the human embryo from the time of fertilization through the eighth post-fertilization week is described for medical policy purposes. During pre-implantation stages, differentiation occurs between precursors of embryonic and extra-embryonic structures. During implantation formation of a fore-hind axis begins within the inner cell mass. By the end of the eighth week, head, face, hands, and feet are suggestive as to species-recognition but not yet definitive. Data from laboratory studies of non-human mammalian embryos elucidate important aspects (...) of human embryonic development. Keywords: embryos, development, differentiation, genome CiteULike Connotea Del.icio.us What's this? (shrink)

This essay briefly describes a few of the problems associated with using personhood language to defend the right to life of the pre‐implantation embryo. Arguing that an immaterial soul explains the personal identity of an embryo is problematic for many people because there is no apparent spiritual activity in the unborn. While some scholars argue that the embryo has the potential to act as an adult person and thus should be protected from harm, others contend that potentiality alone is (...) insufficient reason to ascribe special moral worth to the embryo in utero. For Thomas Aquinas, the soul is not only the life‐principle that organizes the human body, but it is also that by which the human being thinks and wills. By making suitable corrections to Aristotle's hylomorphic depiction of the soul–body relation, I suggest that a rational soul must be present from the moment of conception and that it is at the service of the person. What is of critical importance here is to accept that a human being is present from the moment of conception, something the vast majority of embryologists maintain, notwithstanding the inveiglement of those who state that the pre‐implantation blastocyst is simply a disorganized clump of cells. (shrink)

‘When did I, a human person, begin to exist?’ In developing an answer to this question, I utilize a Thomistic framework, which holds that the human person is a composite of a biological organism and an intellective soul. Eric Olson and Norman Ford both argue that the beginning of an individual human biological organism occurs at the moment when implantation of the zygote in the uterus occurs and the ‘primitive streak’ begins to form. Prior to this point, there does (...) not exist an individual human organism, but a cluster of biological cells which has the potential to split and develop as one or more separate human organisms (identical twinning). Ensoulment (the instantiation of a human intellective soul in biological matter) does not occur until the point of implantation. This conception of the beginning of human personhood has moral implications concerning the status of pre‐implantation biological cell clusters. A new understanding of the beginning of human personhood entails a new understanding of the morality of certain medical procedures which have a direct affect on these cell clusters which contain human DNA. Such procedures discussed in this article are embryonic stem cell research, in vitro fertilization, procured abortion, and the use of abortifacient contraceptives. (shrink)

The lead article in this issue of the Kennedy Institute of Ethics Journal, Joseph Stramondo's "Disabled by Design: Justifying and Limiting Parental Authority to Choose Future Children with Preimplantation Genetic Diagnosis," takes up an issue that is at the center of the growing field of disability studies: what are the moral limits and possibilities when parents wish to use reproductive technologies in order to create a disabled child? This question has been of abstract interest for some time. But as technologies (...) such as pre-implantation genetic diagnosis become increasingly accessible and reliable, and as disability theorists and activists bring growing cultural attention to the ways in which lives with... (shrink)

In the face of rapid technological developments and growing economic pressures, governments around the world are being called upon to regulate activities in the realm of biotechnology. My aim in this paper is to argue that core conceptual insights of feminist ethics are essential to ethically adequate policy-making in this area. Specifically, I shall argue that development of ethical biotechnology require that policy-makers undergo an ontological shift from the currently widespread assumptions of the dominant political framework of liberal individualism to (...) an explicitly feminist understanding of subjects as relational beings. To ground my discussion, I shall explore the field of reproductive technologies, especially as they are used for genetic “improvements.” I shall pay particular attention to the use ofin vitrofertilization in conjunction with pre-implantation genetic diagnosis and related variations.Briefly, IVF, the core technology of so-called new reproductive technologies, is a platform technology that facilitates many other practices through affording access to oocytes and embryos. (shrink)