Although deeply committed to the model of nondirective counseling, most genetic counselors enter the profession with certain assumptions about health and disability—for example, that it is preferable to be a hearing person than a deaf person. Thus, most genetic counselors are deeply troubled when parents with certain disabilities ask for assistance in having a child who shares their disability. This ethical challenge benefits little from viewing it as a conflict between beneficence and autonomy. The challenge is better recast as a (...) conflict between parental autonomy and the child's future autonomy. (shrink)

Responsible conduct of research courses are widely taught, but little is known about the purposes or effectiveness of such courses. As one way to assess the purposes of these courses, students were surveyed about their perspectives after recent completion of one of eleven different research ethics courses at ten different institutions. Participants enrolled in RCR courses in spring and fall of 2003 received a voluntary, anonymous survey from their instructors at the completion of the course. Responses were received from 268 (...) participants. Seventy-seven percent of open-ended responses listed specific kinds of information learned; only a few respondents talked about changes in skills or attitudes. The perception that courses did more to provide information than to foster skills or attitudes was verified in quantitative responses. Over 75% of the respondents specifically noted that courses were useful in preparing them to recognize, avoid, and respond to research misconduct. The two principal findings of this multi-institutional study are that respondents reported: a wide variety of positive outcomes for research ethics courses, but that the impact on knowledge was greater than that for changes in skills or attitudes. (shrink)

There is a flood of papers being published on new ways to diagnose Alzheimer disease before it is symptomatic, involving a combination of invasive tests , and pen and paper tests. This changes the landscape with respect to genetic tests for risk of AD, making rational suicide a much more feasible option. Before the availability of these presymptomatic tests, even someone with a high risk of developing AD could not know if and when the disease was approaching. One could lose (...) years of good life by committing suicide too soon, or risk waiting until it was too late and dementia had already sapped one of the ability to form and carry out a plan. One can now put together what one knows about one's risk, with continuing surveillance via these clinical tests, and have a good strategy for planning one's suicide before one becomes demented. This has implications for how these genetic and clinical tests are marketed and deployed, and the language one uses to speak about them. The phrase ‘there is nothing one can do’ is insulting and disrespectful of the planned suicide option, as is the language of the Risk Evaluation and Education for Alzheimer's Disease studies and others that conclude that it is ‘safe’ to tell subjects their risk status for AD. Further, the argument put forward by some researchers that presymptomatic testing should remain within research protocols, and the results not shared with subjects until such time as treatments become available, disrespects the autonomy of people at high risk who consider suicide an option. (shrink)

Despite more than 25 years of a requirement for training in the responsible conduct of research, there is still little consensus about what such training should include, how it should be delivered, nor what constitutes “effectiveness” of such training. This lack of consensus on content, approaches and outcomes is evident in recent data showing high variability in the development and implementation of RCR instruction across universities and programs. If we accept that one of the primary aims of instruction in RCR/research (...) ethics is “to foster a community of social responsibility”, then it makes sense to consider the research environment itself—where learning one’s science happens where one also engages in social interaction around that science. In order to take the best advantage of that already existing/naturally occurring research environment, the authors, through a deliberative, collaborative, and integrative process, crafted a workshop curriculum meant to arm research faculty with concrete and specific tools to effectively introduce research ethics in the context of the research environment. (shrink)

After a transgression has occurred within an organization, a primary concern is the reintegration of the affected parties back into the organizational community. However, beyond offenders and victims, reintegration depends on the views of organizational peers and their desire to interact with these parties. In two studies, we demonstrated that offender amends and victim forgiveness interact to predict peer reintegrative outcomes. We found evidence of backlash against unforgiving victims: Peers wanted to work the least with victims who rejected appropriate amends, (...) thus penalizing them for their failure to contribute to the restoration process. This backlash effect was due to decreased liking of the victim and the perceived failure to repair the offender-victim relationship. These findings demonstrate that peers expect both offenders and victims to do their part to achieve reconciliation following transgression, and both may suffer the consequences of failing to meet peer expectations. Implications for reintegration within organizations are discussed. (shrink)

Obtaining community consent before conducting genetic research seems to be a way of ensuring that a whole community is not harmed against its wishes—that all Jews, or all African Americans, or all Hutterites are not forced to learn things about themselves they would rather not know, or are not forced into identities they would rather not have. Unfortunately, there are insurmountable problems both in identifying the right representatives of the community and in obtaining their consent.

When cases are described thinly to protect patient confidentiality, they teach us only what we put into them. Thick description, like myth, allows a fuller moral response.

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 ancient practice of metzitzah b'peh, direct oral suction, is still practiced by ultra-Orthodox Jews as part of the religious rite of male newborn circumcision. Between 2000 and 2011, 11 children have died in New York and New Jersey, following infection by herpes simplex virus, presumably from infected practitioners. The City responded by requiring signed parental consent before oral suction, with parents being warned of the dangers of the practice. This essay argues that informed consent is not an appropriate response (...) to this problem. An outright ban would a better response to a practice that is dangerous to children, but might prove unconstitutional under New York State law. (shrink)

As we aggressively pursue research to cure and prevent Alzheimer’s disease, we encounter important ethical challenges. None of these challenges, if handled thoughtfully, would pose insurmountable barriers to research. But if they are ignored, they could slow the research process, alienate potential study subjects and do damage to research recruits and others. These challenges are the necessity of very large cohorts of research subjects, recruited for lengthy studies, probably ending only in the subjects’ death; the creation of cohorts of ’study (...) ready' volunteers, many of whom will be competent to consent at the beginning of the process, but move into cognitive impairment later; reliance on adaptive trial design, creating challenges for informed consent, equipoise and justice; the use of biomarkers and predictive tests that describe risk rather than certainty, and that can threaten participants’ welfare if the information is obtained by insurance companies or long-term care providers; the use of study partners that creates unique risks of harm to the relationship of subject and study partner. We need greater attention, at all levels, to these complex ethical issues. Work on these issues should be included in research plans, from the federal to the local, and should be supported through NIH in the same way that it supported work on the ethical, legal and social implications of genetic research. (shrink)

Nelson Goodman’s disparate writings are often discussed and written about only within their own particular discipline, such that the epistemology is discussed in contrast to others’ epistemology, the aesthetics is contrasted with more traditional aesthetics, and the ontology and logic is viewed in opposition to both other contemporary philosophers and to his historical predecessors. This book argues that that is not an adequate way to view Goodman. The book is divided into three sections: The Metaphysics, The Epistemology, The Aesthetics. I (...) demonstrate, firstly, the dependency of his epistemology and aesthetics on his early metaphysical and ontological writings, and secondly, that it is the very application of those metaphysical and ontological positions to the rest of his philosophical writings that is the source of much of which fails to be completely satisfactory in his aesthetics. They are sequential sections within each providing the ground rules for the next section and, furthermore, providing the reasons for limitations on the terms available to the subsequent section(s). Thus the Metaphysics is an explication of Gooodman’s basic nominalist ontology and logic, and it is upon those principles that he builds his epistemology. It is the sum of both the metaphysics and the epistemology, with the nominalist principle as the guiding force, which constructs the aesthetics. At the end of each section, the consequent limitations imposed on his terms and concepts available to him are explicated, such that, by the end of the book, I am able to delineate the constraints imposed upon the aesthetics by both the metaphysics and the epistemology. (shrink)

Dena Goodman here offers a fresh explanation of how critical theory broke out of the mold of an earlier tradition of discourse—the mirror for princes genre—and shaped its own course in the eighteenth century. Criticism in Action provides a historical analysis of French Enlightenment texts as actions and as the focus of critical activity in which writers and their potential readers participate. Goodman approaches texts as forces that shape the thinking and acting of the individuals engaged in the act (...) of reading and presents new interpretations of major Enlightenment texts by Montesquieu, Rousseau, and Diderot. (shrink)

It is often pointed out that one cannot be “a little bit pregnant,” but pregnancy’s borders are no longer so crisp. At Children’s Hospital of Philadelphia, scientists have created an artificial womb in which “extremely premature” lambs were nurtured for four weeks, enough to make them ready to meet the world. The goal is to advance this technology until it is available for very premature human infants. At present, we put preemies into neonatal intensive care units, which are extremely stressful (...) for the babies and their families, and the things we do to try to support them often cause serious damage. If successful, the artificial womb could be a terrific technology. The implications are remarkable. Would humans become somewhat like marsupials? Now, one is either born or not. Would this technology create a new, intermediate stage? What would this mean ethically and legally? (shrink)

: Because I reject the notion that physical characteristics constitute cultural membership, I argue that, even if the claim were persuasive that deafness is a culture rather than a disability, there is no reason to fault hearing parents who choose cochlear implants for their deaf children.

What makes an artwork bring on the demands of censorship? Is it when it offends a majority of people, a significant minority, or just a few? And is it censorship when the work is denied all venues of exhibition or is it also censorship when it is denied public grants and/or exhibitions dependent on public funds i.e. in museums, but granted the right of private exhibition i.e. in commercial galleries?The article "Censorship, 'Decency' and Dollars" by Dena Shottenkirk deals with (...) the thorny and difficult issues surrounding art censorship, and the political and aesthetic consequences of them. J.S. Mill's harm/offense distinction is sometimes used in such discussions regarding paternalism, but, even setting aside Mill's back-pedaling on public decency concerns, the harm/offense distinction is not the clear-cut one we'd often want in dealing with contemporary culture. How much of modernism's avant-garde would exist without tweaking the boundaries of harm and offense, and how dependent are our free speech rights on such cultural expressions? While hoping to defend the rights of perverse expression and - at the same time-democracy everywhere, the line drawn on what-gets-shown and who-gets-to-decide are tempestuous issues indeed. (shrink)

This article challenges the false opposition between public and private spheres that is often imposed upon our historical understanding in the Old Regime in France. An analysis of the work of Jürgen Habermas, Reinhart Koselleck, Philippe Ariès, and Roger Chartier shows that the "authentic public sphere" articulated by Habermas was constructed in the private realm, and the "new culture" of private life identified by Ariès was constitutive of Habermas's new public sphere. Institutions of sociability were the common ground upon which (...) public and private met in the unstable world of eighteenth-century France. Having superimposed the "maps" of public and private spheres drawn by Habermas and Ariès upon one another, the article then goes on to examine recent studies by Joan Landes and Roger Chartier to show the implications of drawing or avoiding the false opposition between public and private spheres for our understanding of the political culture of the Old Regime and Revolution. (shrink)

While it may be useful to consider the development of new topics in teaching the responsible conduct of research (RCR), it is perhaps equally important to reconsider the traditionally taught core topic areas in both more nuanced and broader ways. This paper takes the topic of authorship as an example. Through the description of two specific cases from sociocultural anthropology, ideas about credit and responsibility are examined. It is suggested that placing more focus on the array of meanings found in (...) the act of authoring might help students see themselves as part of a wider community both of scientists and beyond science. (shrink)

The risks and benefits of genetic research extend beyond individual subjects. Genetic research can also affect the communities to which the subjects belong, by rewriting the narratives and reconfiguring the identities that members of the community share and live by. These far‐ranging effects raise special concerns for obtaining informed consent, for which there is no simple solution.

This past July, five professional societies, whose members together provide the majority of clinical care in the United States, published a statement objecting to “inappropriate legislative interference” with the physician‐patient relationship and reiterated the importance of “putting patients’ best interests first.” Such a collective response is helpful, but given the apparently growing interest among legislators in legislating aspects of physician‐patient communications, individual physicians, too, may have to face this problem. What should a physician do when confronted with a law that (...) attempts to intervene in the doctor‐patient relationship in a way that the physician believes undercuts good medical care? (shrink)

Many healthy older people are very afraid of becoming demented as they age. As people who currently value autonomy, dignity and independence, they presumably would wish to use some form of advance...

Advances in genetic research and technology can have a profound impact on identity and family dynamics when genetic findings disrupt deeply held assumptions about the nuclear family. Ancestry tracing and paternity testing present parallel risks and opportunities. As these latter uses are now available over the internet directly to the consumer, bypassing the genetic counselor, consumers need adequate warning when making use of these new modalities.

Henry Molaison, aged eighty-two, died at the end of 2008, and just after noon on exactly the first anniversary of his death, December 2, 2009, scientists began slicing his brain into 2,500 tissue samples. Known primarily in his lifetime as only H.M., he left his brain to science so that it could be dissected and digitally mapped – a gift much beloved by many scientists. An amnesiac in life, H.M. first rose to prominence in 1962 when Dr. Brenda Milner, a (...) pioneer in the field of neuropsychology, demonstrated that though H.M. was severely amnesic and could not remember past activities, he could nevertheless learn certain habits. The experiment involved the now famous mirror drawing. This article, written by a philosopher/artist and a neuroscientist/neuroaesthetician, argues that artists are unable to verbally articulate thoughts about their own art practice for reasons similar to why H.M. could not. All memories are not stored in the same part of the brain. Different categories of memories i.e., semantic memory or procedural memory, are stored in different parts of the brain. We argue that the procedural memory is not readily accessible to semantic memory. (shrink)

Despite repeated calls for equity, diversity, and inclusion in nursing education and the significance of disability for the vocation of nursing, the voices and experiences of nursing faculty with disabilities are largely absent from our literature. In this paper, we present a critical grounded theory of the experiences of disabled nursing faculty in academe to begin to amend this gap. Using critical disability studies as a sensitizing framework and building on prior work on racism and other systems of oppression in (...) nursing, we theorize that nursing academe is a normalized space produced by White, able‐mindbodied, and cis‐heteropatriarchal discourses that regulate the boundaries of inclusion via exclusionary social norms. Further, we describe the operations of normalcy in nursing academe, discuss implications for education and health care, and consider avenues for change. (shrink)

We conducted a meta-analysis of 17 studies that tested for an association between grandparental survival and grandchild survival in patrilineal populations. Using two different methodologies, we found that the survival of the maternal grandmother and grandfather, but not the paternal grandmother and grandfather, was associated with decreased grandoffspring mortality. These results are consistent with the findings of psychological studies in developed countries (Coall and Hertwig Behavioral and Brain Sciences 33:1-59, 2010). When tested against the predictions of five hypotheses (confidence of (...) paternity; grandmothering, kin proximity, grandparental senescence, and local resource competition), our meta-analysis results are most in line with the local resource competition hypothesis. In patrilineal and predominantly patrilocal societies, the grandparents who are most likely to live with the grandchildren have a less beneficial association than those who do not. We consider the extent to which these results may be influenced by the methodological limitations of the source studies, including the use of retrospective designs and inadequate controls for confounding variables such as wealth. (shrink)

This paper provides new theoretical insights into the interconnections and relationships between women, management and globalization in the Middle East (ME). The discussion is positioned within broader globalization debates about women’s social status in ME economies. Based on case study evidence and the UN datasets, the article critiques social, cultural and economic reasons for women’s limited advancement in the public sphere. These include the prevalence of the patriarchal work contract within public and private institutions, as well as cultural and ethical (...) values which create strongly defined gender roles. The discussion examines the complexities of conceptualizing women’s equality and empowerment in Islamic states. The paper reveals that there have been significant achievements in advancing women in leadership and political roles, but that there are still institutional and cultural barriers embedded in business systems. Linking feminist, development and management theoretical strands a development framework is proposed which is sensitive to the Islamic Shar’ia encompassing government, organization and individual level strategies. It is suggested that scholars should integrate literatures from gender and management, development and Middle East studies, and in particular that critical scholars of gender and organization should consider the interrelations of the national and transnational in critiques of contemporary global capitalism to understand the complexity of women and social change in the ME. (shrink)

The creation of embryos for research use has drawn a great deal of criticism. It is difficult to defend an ethical distinction between what one can do to "spare" embryos and what one can do to "research" embryos. The strongest ground on which to argue against the creation of embryos for research is a symbolic one, having to do with respect for human life. Ronald Dworkin's work in Life's Dominion on the symbolic meaning of the abortion debate throws a helpful (...) light on this dispute. By understanding the basic question to be, Does the creation of research embryos weaken or insult our communal respect for the sanctity of human life in some way that in vitro fertilization (IVF) or the experimental use of "spare" embryos does not?, the debate can move in a more constructive direction. (shrink)

: It is possible and necessary to compare stretches of human life with other goods, such as the good of conserving resources for others. A minute of human life is not of infinite value; all else being equal, a minute of life is less valuable than 10 years of the same life. Nevertheless, this ability to evaluate human life does not necessarily lead to total commodification of human life.

The speed and degree to which e- commerce is infiltrating the very fabric of our society, faster and more pervasively than any other entity in history, makes an examination of its ethical dimensions critical. Though ethical lag has heretofore hindered ourexplorations of e- commerce ethics, it is now time to identify and confront them. In this paper we define e- commerce and describe thecharacteristics that set it apart from traditional brick and-mortar business. We then examine the ethical foundation of e- (...) commerce, focusing on the question, “Is there a special e- commerce ethics?” Our answer is “no.” We support our answer by showing that the current issues in e- commerce ethics and brick-and-mortar business are fundamentally the same, but that e- commerce issues have different manifestations and scope. We then demonstrate that ethical principles and rules in e- commerce and brick-and-mortar business are fundamentally the same, but have different manifestations at the most specific level. We elucidate this point by discussing the use of personal information and the opt-in, opt-out debate. We conclude with a call for research on trust, a key value in the success of e- commerce. (shrink)

In some sense, and perhaps this is the hallmark of the modern era, all families cope with competing identities. Children may choose high‐demand careers, such as the priesthood or the military, that may well make them seem like strangers to their parents, speaking almost a different language and embracing values and loyalties unknown at home. Grown children can convert to alien religions and live halfway across the world. Children of immigrants assimilate and may not even have a language in common (...) with their grandparents. But in his book Far from the Tree, Solomon focuses on identities that are inborn, although not necessary genetic, so that, while the child is still “in the nest,” he or she is already somehow a changeling. As the title has it, sometimes the apple does fall “far from the tree.”. (shrink)

Hastings Center Report, Volume 52, Issue 1, Page 59-60, January/February 2022.