apart, exaggerating—perhaps even on occasion creating—differences that could be reconciled if we placed somewhat less emphasis on rights to privacy and property and more emphasis on opportunities for shared responsibility in relieving genetically-based human suffering.

This perspective has practical implications for current legislative debates about the rights of research subjects. Legislation can be drafted that strikes an appropriate balance and lays the foundation for incentive-based cooperation between research subjects, families and genetically-related groups, researchers, care providers, insurers, employers, and family planning counselors.

My plea for balance between rights and responsibilities may perhaps be dismissed as the idealistic musings of a disaffected attorney. I must sound positively disloyal to others of my ilk whose bread-and-butter, like my own, is rights-based statute-drafting, regulatory representation, and litigation. Yet, the case can be made on purely practical grounds that the course on which we have embarked will fail, and that eventually we will want to strike a more publicly minded "equipoise" between individual rights and the overall community interest. Let me elaborate.

Some stakeholders, including some researchers, seem intent on erecting a legal wall with genetic information about individuals on one side of the wall, and insurers, employers, researchers, medical caregivers, and even spouses, children, and other family members on the other side.* At the conference, Susan Rose stated that "privacy does not exist," i.e., cannot be guaranteed. I believe that individual genetic information (especially for research purposes) can be kept confidential and that practical measures can be put in place to ensure confidentiality, at least so far as our current genetic database is concerned. However, as time passes, the amount and value of genetic information will assume enormous proportions. At some relatively proximate time in the future, after (1) a substantial number of the estimated 4,000 genetic diseases is mapped, (2) genetic predisposition to disease and injury is better understood, and (3) a significant part of a person's ordinary medical care becomes genetics-based, the pressure to use this wealth of information in health care delivery, family planning, employment decisions, and life and health insurance will be overwhelming. Statutory prohibitions against the use of a large genetic database are unrealistic and will engender abuse, covert markets in information, litigation to vindicate (or abrogate) rights, and an intolerant climate for additional research. We cannot pursue the genetics revolution while simultaneously erecting legal barriers to its practical use.

I agree that genotype and phenotype are not deterministically linked by rigid cause-and-effect. A person's genome never will be to a person what a blueprint


To summarize for emphasis: an individual may refuse genetic testing; may permit it but ask not to be told the results; may receive the results but not have to act on it; may deny or subsequently withdraw access to test results and samples to anyone; and may bargain financially without limit for the use of test results and bodily samples.

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