Personhood: Elusive But Not Illusory

Bioethics as a field has been fortunate that its values and concerns have mirrored the values and concerns of society. In light of the September 11th attacks, it is possible that we are witnessing the beginning of a transition in American culture, one fraught with implications for bioethics. The emphasis on autonomy and individual rights may come to be tempered by greater concern over the collective good. Increased emphasis on solidarity over autonomy could greatly alter public response to research abuses aimed at defense from bioterrorism, to privacy of genetic information, and to control of private medical resources to protect the public health.     

Bioethics after the terror

Bioethics as a field has been fortunate that its values and concerns have mirrored the values and concerns of society. In light of the September 11th attacks, it is possible that we are witnessing the beginning of a transition in American culture, one fraught with implications for bioethics. The emphasis on autonomy and individual rights may come to be tempered by greater concern over the collective good. Increased emphasis on solidarity over autonomy could greatly alter public response to research abuses aimed at defense from bioterrorism, to privacy of genetic information, and to control of private medical resources to protect the public health.     

Genetic Information,Non-Discrimination,and Privacy Protections in Genetic Counseling Practice

The passage of the Genetic Information Non Discrimination Act (GINA) was hailed as a pivotal achievement that was expected to calm the fears of both patients and research participants about the potential misuse of genetic information. However, 6 years later, patient and provider awareness of legal protections at both the federal and state level remains discouragingly low, thereby, limiting their potential effectiveness. The increasing demand for genetic testing will expand the number of individuals and families who could benefit from obtaining accurate information about the privacy and anti-discriminatory protections that GINA and other laws extend. In this paper we describe legal protections that are applicable to individuals seeking genetic counseling, review the literature on patient and provider fears of genetic discrimination and examine their awareness and understandings of existing laws, and summarize how genetic counselors currently discuss genetic discrimination. We then present three genetic counseling cases to illustrate issues of genetic discrimination and provide relevant information on applicable legal protections. Genetic counselors have an unprecedented opportunity, as well as the professional responsibility, to disseminate accurate knowledge about existing legal protections to their patients. They can strengthen their effectiveness in this role by achieving a greater knowledge of current protections including being able to identify specific steps that can help protect genetic information.     

Reproductive autonomy rights and genetic disenhancement: sidestepping the argument from backhanded benefit

John Robertson has famously argued that the right to reproductive autonomy is exceedingly broad in scope. That is, as long as a particular reproductive preference such as having a deaf child is "determinative" of the decision to reproduce then such preferences fall under the protective rubric of reproductive autonomy rights. Importantly, the deafness in question does not constitute a harm to the child thereby wrought since unless the child could be born deaf he or she would otherwise never have existed--his or her prospective parents would simply have chosen to abort. As such, for this child, being born deaf counts as a benefit, albeit of the "backhanded" variety, since the only other practical alternative is nonexistence. In what follows, I want to investigate this argument in detail. The target of my investigation will be the possible future use of gene therapy technology to "disenhance" one's offspring. I intend to show that the apparently unlimited right to reproductive autonomy, that is, the right to choose both the quantity and qualities of future offspring, entailed by the argument from backhanded benefit can in fact be "sidestepped" through considering what sorts of reproductive practices we as a society ought to allow.     

Therapeutic versus genuine cloning: what are the real moral issues?

In order to answer the question raised in the title of my paper, I first put forward a general ethical theory, which is based on the traditional maxim neminem laedere. Second, I show how this principle in conjunction with certain assumptions concerning the value of life entails certain fundamental bioethical principles. Thus killing a living being Y is morally wrong whenever the intrinsic value of the life that Y would otherwise live is positive. But procreating a living being Y is prima facie (i.e., with regard to the interests of Y) morally neutral, i.e. neither bad nor good. Third I will argue that the question of moral rights should always be reduced to the question of the morality of certain corresponding actions. In particular, granting Y a right to life should be taken to mean that it would be morally wrong if someone else were to put an end to Y's life. In a similar vein, I suggest answers to some other questions of the reproductive rights issue. Fourth, with respect to the controversial issue of genuine cloning, I do not see any compelling moral reasons against this utopian way of procreating full-grown individuals. Nevertheless, I think there are a lot of other good (pragmatic, rational) reasons not to try to produce a human Dolly. Finally, as regards the use or abuse of human embryos as potential suppliers of stem-cells for the cure of other people's diseases, it seems morally safe to perform experiments at least with those embryos which, like spare embryos that remained from measures of in vitro fertilization, would not have a life anyway. It's more difficult to decide, however, whether it would be morally safe to produce embryos (for instance through cloning) only for the sake of using them in the aforementioned way.     

Speak No Evil: Scientists,Responsibility, and the Public Understanding of Science

In this paper, I will discuss the responsibilities that scientists have for ensuring their work is interpreted correctly. I will argue that there are three good reasons for scientists to work to ensure the appropriate communication of their findings. First, I will argue that scientists have a general obligation to ensure scientific research is communicated properly based on the vulnerability of others to the misrepresentation of their work. Second, I will argue that scientists have a special obligation to do so because of the power we as a society invest in them as specialists and professionals. Finally, I will argue that scientists ought to ensure their work is interpreted correctly based on prudential, self-interested considerations. I will conclude by offering suggestions regarding policy considerations.     

Should we select for genetic moral enhancement? A thought experiment using the MoralKinder (MK+) haplotype

By using preimplantation haplotype diagnosis, prospective parents are able to select embryos to implant through in vitro fertilization. If we knew that the naturally-occurring (but theoretical) MoralKinder (MK+) haplotype would predispose individuals to a higher level of morality than average, is it permissible or obligatory to select for the MK+ haplotype? I.e., is it moral to select for morality? This paper explores the various potential issues that could arise from genetic moral enhancement.     

Religion and Reproductive Genetics: Beyond Views of Embryonic Life?

Advances in new reproductive genetic technologies have spawned a very polarized public and political debate. As with the abortion debate, most formal opposition to these technologies comes from religious organizations that are concerned about embryonic and fetal life. In this article we conduct an analysis of the first nationally representative opinion survey on religion and reproductive genetics. We find, as in the abortion debate, that evangelicals, fundamentalists, and traditionalist Catholics are more opposed than more liberal religious groups. When we compare respondents with the same views on embryonic life, we find that differences remain in the level of approval for genetic technologies, suggesting that there is more to this debate than concern about embryos. We also find that religious conservatives are more distinct from the religious nonattenders in their views of health objectives of reproductive genetic technologies and less distinct in their views of improvement objectives.     

Sex Education and Intellectual Disability: Practices and Insight from Pediatric Genetic Counselors

Intellectual disability (ID) with or without other anomalies is a common referral for genetic counseling. Sessions may include discussions of reproductive implications and other issues related to sex education. Patients with ID regularly meet barriers when trying to obtain sex education due to the misperceptions of others as being either asexual or that such education would promote inappropriate sexual behavior. In this pilot study, we surveyed genetic counselors to explore their experiences with being asked to provide sex education counseling and their comfort in doing so for patients with ID ages 9–17. Results were analyzed from 38 respondents. Caregivers and patients most frequently requested information on puberty, sex abuse prevention, and reproductive health. Genetic counselors were most comfortable when they could provide sex education counseling within the context of a particular condition or constellation of features. They were least comfortable when they lacked familiarity with the patient, caregiver, or the family’s culture. The most frequently cited barriers that prevented genetic counselors from providing sex education counseling were lack of time, lack of training, the patient’s ID being too profound, and a belief that genetic counselors should not be responsible for providing sex education counseling. While many respondents reported that providing sex education counseling is not considered within the scope of a genetic counselor’s practice, they also noted that patients’ families initiate discussions for which counselors should be prepared. Respondents indicated that resource guides specifically designed for use by genetic counselors would be beneficial to their practice. Genetic counselors have the opportunity to embrace the role of advocate and broach the issue of sexual health with caregivers and patients by directing them toward educational resources, if not providing sex education directly to effectively serve the needs of patients and caregivers.     

Newborn screening for fragile X syndrome

Newborn screening for fragile X syndrome (FXS) is technically possible, and in the relatively near future accurate and inexpensive screening technologies are likely to be available. When that happens, will America's public health system adopt newborn screening for fragile X syndrome? This article addresses this issue by first placing screening for FXS in the context of the history and current status of newborn screening policy and practice. Lack of a proven medical treatment may stand as a barrier to newborn screening, but strong arguments can be made that early intervention provides important services for identified newborns and their families. Furthermore, other arguments could be used to justify newborn screening, including informed reproductive risk, medically necessary information, and consumer demand. Fragile X syndrome is offered as a prototype for many of the issues that will face society as more genetic disorders are discovered and new technologies for screening are developed.     

Responsibility of and Trust in ISPs

This discussion is about the neglected concepts of trust and social responsibility on the Internet. I will discuss and explain the concepts and their implications to people and society. I then address the issue of moral and social responsibilities of ISPs and web-hosting companies. I argue that ISPs and web-hosting companies should aspire to take responsibility for content and that they should respect and abide by their own terms of conduct.     

Pediatric Predispositional Genetic Risk Communication: Potential Utility for Prevention and Control of Melanoma Risk as an Exemplar

Predispositional genetic testing among minor children is intensely debated due to the potential benefits and harms of providing this type of genetic information to children and their families. Existing guidelines on pediatric genetic testing state that predispositional testing could be appropriate for minors if preventive services exist that mitigate children’s risk for or severity of the health condition in question. We use the example of hereditary melanoma to illustrate the rationale for and potential application of genetic risk communication for an adult-onset cancer to a pediatric population where childhood behaviors may reduce risk of disease later in life. We draw from the adult melanoma genetic risk communication and pediatric health behavior change literatures to suggest ways in which genetic test reporting and complementary education could be delivered to children who carry a hereditary risk for melanoma and their families in order to foster children’s engagement in melanoma preventive behaviors. Genetic discoveries will continue to yield new opportunities to provide predispositional genetic risk information to unaffected individuals, including children, and could be delivered within programs that provide personalized and translational approaches to cancer prevention.     

What Lies Beyond Same‐Sex Marriage? Marriage,Reproductive Freedom and Future Persons in Liberal Public Justification

In this article I consider whether the legalization of sex-same marriage implies a right to incestuous marriage. I begin by suggesting that the liberal state get out of the 'marriage' business by leveling down to a universal civil union status. The question is then whether incestuous unions should be both legal and eligible for this status. I argue that the arguments compatible with public reason for prohibiting them outright, or even for excluding them from the permissible types of legally registered partnerships, are quite weak. The objections to allowing such relations are those from (1) child abuse; (2) unfair burdening of society; and (3) the creation of bad lives. I argue that while rape and other forms of child abuse would be no more legal or tolerated than they are now, the concern about any form of weakening a society's legal and political resources to combat such abuses does indeed register on the justificatory scale, but does not prove that such first-degree incestuous sexual relations are inherently bad enough to warrant intervention in their own right. I then argue that the concern about unfairly burdening society with unhealthy persons is not as dangerously totalitarian as we might initially fear, but nor is it strong enough to justify an outright prohibition. Finally, I argue that a concern to dissuade persons from creating certain kinds of lives (children with extreme birth defects) is also not as dangerously totalitarian as we might initially fear, and in fact goes further towards explaining why we might have a legitimate interest in intervening. Nonetheless, I argue that the criminalization of such acts only make sense when they are indicators of other offenses, namely negligence or abuse, and it thus seems that the act of consanguineous reproduction is itself insufficient.     

Splitting embryos on the slippery slope: ethics and public policy.

Neither the George Washington University embryo splitting experiment nor the technique of embryo splitting itself has ethical flaws. The experiment harmed or wronged no one, and the investigators followed intramural review procedures for the experiment, although some might fault them for failing to seek extramural consultation or for not waiting until national guidelines for research on preembryos were developed. Ethical objections to such cloning on the basis of possible loss of individuality, possible lessening of individual worth, and concern about potential harm to the resulting children are discussed and challenged, as are objections to the creation of embryos for the purpose of genetic diagnosis. Many of the ethical questions raised by the George Washington experiment are similar to those posed by existing reproductive technologies that allow the simultaneous production of several embryos. A multidisciplinary group should consider whether regulation of cloning is needed, and laws should be enacted to prohibit a commercial market for all frozen embryos.     

A Qualitative Analysis of Power Differentials in Ethical Situations in Academia

Power and organizational hierarchies are ubiquitous to social institutions that form the foundation of modern society. Power differentials may act to constrain or enhance people’s ability to make good ethical decisions. However, little scholarly work has examined perceptions of this important topic. The present effort seeks to address this issue by interviewing academics about hypothetical ethical problems that involve power differences among those involved. Academics discussed what they would do in these scenarios, often drawing on their own experiences. Using a think-aloud protocol, participants were prompted to discuss their reasoning and thinking behind their ethical decisions. These interview data were content analyzed using a semantic analysis program that identified a number of distinct ways that academics think about power differences and abuses in ethical situations. Implications of these findings are discussed.     

Longitudinal Interviews of Couples Diagnosed with Diminished Ovarian Reserve Undergoing Fragile X Premutation Testing

About 10 % of infertile/subfertile women are diagnosed with diminished ovarian reserve (DOR), of which?<?5 % will become pregnant spontaneously. Fragile X (FMR1) genetic testing may provide a reason for her early ovarian aging and/or have reproductive implications. Seven women with DOR (genetic study subset) and the male partners of six of these women were separately interviewed about the experience of being asked to undergo this unanticipated genetic test. Three interviews were conducted (before, within 1 week after, and 3 months after learning the test results). None of the participants carried the FMR1 premutation (largest FMR1 allele 27–50 CGG repeats). For women, their pregnancy-seeking journey was long and exhausting. Women understood the reproductive implications of carrying the FMR1 premutation, and hoped for a negative result. Being offered a genetic test caused women to pause and re-think their future reproductive plans. Husbands viewed the infertility journey as filled with unknowns, of which the genetic test results would be one more puzzle piece. The expense of fertility testing/treatment was mentioned by both spouses, though more notably by husbands. The introduction of a possible genetic cause of infertility, with additional potential health consequences for future biological children, caused women to re-think their quest for pregnancy. In contrast, the genetic test was viewed as an additional source of information for their husbands as opposed to raising concern regarding potential reproductive ramifications.     

Shaping Individuality: Human Inheritable Germ Line Gene Modification

In this paper I deal with ethical factors surrounding germline gene therapy. Such implications include intergenerational responsibility, human dignity, moral status of embryos and so on. I will explore the relevance of the above mentioned issues to discuss the ethical implication of human germline gene therapy (HGLT). We will see that most of arguments claimed by bioethicists do not provide valid reason to oppose HGLT. I will propose an alternative view, based on personal identity issues, to discuss the ethics of human inheritable gene modification. This revised version was published online in August 2006 with corrections to the Cover Date.     

Genetic Counseling, Reproductive Behavior and Future Reproductive Intentions of People with Neurofibromatosis Type 1 (NF1)

Neurofibromatosis type 1(NF1) is a complex and variable inherited disorder. The complexity and variability present particular difficulty for genetic counseling. Thirty-three people with NF1 of reproductive age were interviewed about their experience of genetic counseling, their past reproductive behavior and future intentions. One third reported having had no genetic counseling or not having it until after their first child. In part, this may be due to delay in diagnosis but also indicates poor access to genetic services. Only three people had ever been offered prenatal genetic testing and only one had accepted. Although testing is still technically difficult, the greatest deterrent to uptake of prenatal testing for NF1 is the variability of the disorder. However, six of the 17 people planning future pregnancies would want a test with a view to termination if necessary. Others would welcome testing in order to be prepared but not to terminate. We discuss some of the factors which influence reproductive decision making for people with NF1 and some of the difficulties in genetic counseling in such a variable and complex disorder.     

印度干细胞及遗传学研究的途径

在印度,科学家和政府对印度的基因组研究了干细胞研究充满了热情。而有关的伦理准则就显得尤为重要。印度在2000年颁布的准则是针对胎儿研究结果的保密性,以研究为目的而剩余的胚胎不能用于商业用途。辅助生殖技术应确保参与者的知情同意。保密性和遗传学秘密对遗传学研究是非常重要的。专家认为在干细胞与基因组研究领域中,伦理学及政府的阻碍并不是主要的负担,而主要的问题在于科技的发展与应用中的经济问题。同时,公众的积极参与也是非常重要的。     

Markets in women's reproductive labor

Much of the evolution of social policy in the twentieth century has occurred around conflicts over the scope of markets. To what extent, under what conditions, and for what reasons should we limit the use of markets? Recently, American society has begun to experiment with markets in women's reproductive labor. Many people believe that markets in women's reproductive labor, as exemplified by contract pregnancy, are more problematic than other currently accepted labor markets. I will call this the asymmetry thesis because its proponents believe that there ought to be an asymmetry between our treatment of reproductive labor and our treatment of other forms of labor. Advocates of the asymmetry thesis hold that treating reproductive labor as a commodity, as something subject to the supply-and-demand principles that govern economic markets, is worse than treating other types of human labor as commodities. Is the asymmetry thesis true? And, if so, what are the reasons for thinking that it is true? My aims in this article are to criticize several popular ways of defending the asymmetry thesis and to offer an alternative defense....I focus my discussion on those arguments against contract pregnancy that depend on the asymmetry thesis. I believe that the asymmetry thesis both captures strong intuitions that exist in our society and provides a plausible argument against contract pregnancy.