The author praises Sharp and Foster’s differentiation of the forms of “community review,” and agrees that the discussion is far from settled. He argues that rather than attempting to define “community” by various criteria, it might be more helpful to both researchers and research subjects to enable persons to create their own communities: a process … Read more

The ethical and clinical dimensions of strabismus surgery in a case of an infant with mucolipidosis type II are discussed. Three sets of considerations are relevant to the decision of performing such surgery: professional obligations to protect patients from futile or contraindicated treatment; parental authority to assess the risks and benefits for elective pediatric care; … Read more

American families are a segment of the public that will feel the impact of the Human Genome Project most acutely: but they are also one of the least well studied segments with regard to that impact. Three sets of ethical problems, in particular, deserve more scrutiny: the effect of increased genetic risk assessment on family … Read more

In this essay, I examine the sources and reach of the NIH “Points to Consider.” These guidelines are based on normative considerations inherited from two sets of science policy deliberations that took place in the United States during the 1970s: the discussion of research with human subjects and the recombinant DNA debate. The combined lessons … Read more

On March 1, 1999, U.S. Attorney General Janet Reno asked the National Commission on the Future of DNA Evidence to assess the legality of collecting DNA samples from everyone arrested by the police, and of banking the individually identifying genetic information they contain for future law enforcement use. This request came on the heels of … Read more

Although the ability to perform gene therapy in human germ-line cells is still hypothetical, the rate of progress in molecular and cell biology suggests that it will only be a matter of time before reliable clinical techniques will be within reach. Three sets of arguments are commonly advanced against developing those techniques, respectively pointing to … Read more

As the international effort to map the human genome matures, scientific interest in using that map to evaluate the genetic differences among human groups is growing. It recently has become popular (and politically important) to argue that this new interest in what might be called “population genomics” puts at risk significant interests of the groups … Read more

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, … Read more

The Program and the Ethical, Legal, and Social Implications (ELSI) of human genome research is a branch of the National Center for Human Genome Research (NCHGR) at the National Institutes of Health (NIH). The NCHGR is responsible, in conjunction with the Office of Health and Environment at the Department of Energy (DOE), for administration and … Read more