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.

Genetics offers real opportunities for public health actors. Increased understanding of genetics will illuminate some of the factors that affect disease and, in many cases, will lead to more effective treatments. The recognition that phenylketonuria was caused by a metabolic defect that led to the accumulation of toxic levels of phenylalanine, an elevation that could largely be averted by adopting a low-phenylalanine diet, is an early example. Some cases of what was thought to be Sudden Infant Death Syndrome, a diagnosis (...) used when no etiology is known, now appear to have been caused by metabolic defects in fatty acid oxidation and sodium channel defects. One of the tasks that has already been undertaken by the public health sector is to ensure that genomic information is incorporated into clinical care when the robusmess of findings and their clinical utility have been well defined. (shrink)

This paper critically examines the biology of species identity and the morality of crossing species boundaries in the context of emerging research that involves combining human and nonhuman animals at the genetic or cellular level. We begin with the notion of species identity, particularly focusing on the ostensible fixity of species boundaries, and we explore the general biological and philosophical problem of defining species. Against this backdrop, we survey and criticize earlier attempts to forbid crossing species boundaries in the creation (...) of novel beings. We do not attempt to establish the immorality of crossing species boundaries, but we conclude with some thoughts about such crossings, alluding to the notion of moral confusion regarding social and ethical obligations to novel interspecies beings. (shrink)

It is widely thought that genetic counselors should work with parents “nondirectively”: they should keep parents informed and support their decisions. But this view misconceives human decisionmaking by failing to recognize that value choices are constructed within and constrained by a community. Acknowledging that decisions involve interaction with and responsibility toward others leads to a “dialogical” model of counseling, in which genetic counselors may question and guide parents’ decisions.

We have surveyed various recent European opinions on Germ-Line engineering. The majority express more or less severe reservations about any interventions on the human Germ-Line, including therapeutic ones. However, they are divided over the pragmatic, or categorical-ethical nature of the relevant arguments. This split reflects two competing views of technology. The ‘pessimistic’ one is deeply concerned by the slippery slope leading from bona fide therapeutic applications of genetic engineering to eugenic practices. It insists that, if anything can defend us against (...) these evils, it must be a set of strong, ethically-based prohibitions. The other, ‘optimist’ view is more confident in the discriminating powers of societal regulation. We argue for the latter view and suggest that the pragmatic arguments brought to this debate are less problematic than the ethical ones. (shrink)

: Some argue that human groups have a stake in the outcome of population-genomics research and that the decision to participate in such research should therefore be subject to group permission. It is not possible, however, to obtain prior group permission, because the actual human groups under study, human demes, are unidentifiable before research begins. Moreover, they lack moral standing. If identifiable social groups with moral standing are used as proxies for demes, group approval could be sought, but at the (...) expense of unfairly exposing these surrogates to risks from which prior group approval is powerless to protect them. Unless population genomics can proceed without targeting socially defined groups, or can find other ways of protecting them, it may fall to individuals to protect the interests of the groups they care about, and to scientists to warn their subjects of the need to do so. (shrink)

Genetics offers real opportunities for public health actors. Increased understanding of genetics will illuminate some of the factors that affect disease and, in many cases, will lead to more effective treatments. The recognition that phenylketonuria was caused by a metabolic defect that led to the accumulation of toxic levels of phenylalanine, an elevation that could largely be averted by adopting a low-phenylalanine diet, is an early example. Some cases of what was thought to be Sudden Infant Death Syndrome, a diagnosis (...) used when no etiology is known, now appear to have been caused by metabolic defects in fatty acid oxidation and sodium channel defects. One of the tasks that has already been undertaken by the public health sector is to ensure that genomic information is incorporated into clinical care when the robusmess of findings and their clinical utility have been well defined. (shrink)

The "new family" of disciples was formed by faith and commitment and included those who had traditionally been outsiders. Similarly, Christian ethics can support the bonding in covenant love of nonbiological families brought together by sometimes painful circumstances that can be redeemed by their actions. While the Christian tradition is supportive of the idea that birth parents should rear their children, it also relativizes the biological family by adding meaning to adoption. This is a creative tension.

ABSTRACTIn 1994, the Committee on Assessing Genetic Risks of the Institute of Medicine published their recommendations regarding the ethical issues raised by advances in genetics. One of the Committee's recommendation was to inform women when test results revealed misattributed paternity, but not to disclose this information to the women's partners. The Committee's reason for withholding such information was that “'genetic testing should not be used in ways that disrupt families”. In this paper, I argue that the Committee's conclusion in favour (...) of nondisclosure to the male partner is unethical. I argue that both parties ought to be informed. (shrink)

The rapidly changing field of genetics affects society through advances in health-care and through implications of genetic research. This study addresses the impacts of new genetic discoveries and technologies on different segments of today's society. The book begins with a chapter on genetic complexity, and subsequent chapters discuss moral and ethical questions arising from today's genetics from the perspectives of health care professionals, the media, the general public, special interest groups and commercial interests.

The ultimate goal of the pioneering project outlined in this book is to map our genome--the key to what makes us human--in detail. The Code of Codes is a collective exploration of the substance and possible consequences of th is project in relation to ethics, law, and society.

In its excitement over the quandries posed by biotechnology, bioethics is in danger of neglecting basic health care needs. What is needed is an understanding of ethics that emphasizes responsibility to others rather than rights.

This paper critically examines the biology of species identity and the morality of crossing species boundaries in the context of emerging research that involves combining human and nonhuman animals at the genetic or cellular level. We begin with the notion of species identity, particularly focusing on the ostensible fixity of species boundaries, and we explore the general biological and philosophical problem of defining species. Against this backdrop, we survey and criticize earlier attempts to forbid crossing species boundaries in the creation (...) of novel beings. We do not attempt to establish the immorality of crossing species boundaries, but we conclude with some thoughts about such crossings, alluding to the notion of moral confusion regarding social and ethical obligations to novel interspecies beings. (shrink)