consultation when doing genetics research in discrete subpopulations, and the duty to notify sample donors and their relatives of research findings.

Research Priorities

One myth about scientific research is that science is value neutral—that new scientific understandings await discovery, that these discoveries have no independent moral significance, and that they take on moral significance only when individuals and groups of individuals assign weight to scientific findings. One flaw in this argument is that there are seemingly limitless areas for scientific inquiry, yet there are finite numbers of scientists and limited resources to pursue research. Therefore, scientists and society must set priorities for research, and those priorities are a function of societal values. Even though scientists often make adventitious discoveries, they generally discover what they are looking for, and what they look for are the things that science and society value discovering.

Pharmacogenomics provides a good illustration. Pharmaceutical researchers may discover numerous polymorphisms in the gene for a particular drug target. Before spending tens or hundreds of millions of dollars on studying a particular polymorphism, any revenue-conscious biotech or pharmaceutical company will try to ascertain the population frequency of these drug targets. Consequently, initial drug development does not focus on genetic variations found most often among individuals in developing countries, where most people do not have the money to pay for basic medicines, let alone expensive new products that treat persons with particular genotypes. Even in developed countries, without some external support from government or private sources, developing drugs directed at rare genotypes is not cost-effective.

Another way to set research priorities is to focus on the nature of the harm to be prevented. It has been asserted that a disproportionate share of health resources (research and treatment) are directed at specific diseases simply because of the effectiveness of advocacy groups working on behalf of affected individuals (Greenberg 2001). Similarly, environmental policy may be influenced by considering certain environmental risks to be of greater societal concern than others. For example, it has been argued that U.S. environmental policy is flawed because we spend millions of dollars on a relatively few Superfund sites in need of remediation but insufficient sums on air and water pollution, which is a more widespread threat to public health (Breyer 1995). Undoubtedly, the targets of toxicogenomic research will be influenced by a myriad of social factors, and priority setting will be influenced by economic and political concerns.

The Federal Rule for the Protection of Human Subjects

The federal Rule for Protection of Human Subjects (45 C.F.R. Part 46, Subpart A) is usually referred to as the Common Rule, because most federal



The National Academies | 500 Fifth St. N.W. | Washington, D.C. 20001
Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement