Sponsored by the U.S. Department of Energy Human Genome Program
Human Genome News Archive Edition
Human Genome News, July 1994; 6(2)
The NIH-DOE Joint Working Group on the Ethical, Legal, and Social Implications (ELSI) of Human Genome Research met April 21-22 in Bethesda, Md., to conduct a workshop on the privacy of genetic information and develop a knowledge base from which to formulate policy recommendations. The workshop was organized by Michael Yesley [DOE's Los Alamos National Laboratory (LANL)]. Several NIH and DOE grantees who are studying genetic-information privacy from sociological, philosophical, and legal perspectives were invited to report on their preliminary results, and other commentators with expertise in information privacy or discrimination contributed additional analysis.
Health-information privacy is an important topic during this period when health-care reform is being actively discussed, and the use of genetic information raises particularly difficult practical and philosophical problems related to access and disclosure. Third parties such as insurers, employers, adoption agencies, and educational institutions may feel they need to access genetic data that might have predictive or diagnostic value, while others feel that such access could lead to discrimination. Some proposed legislation, such as the Fair Health Information Practices Act of 1994 (H.R. 4077), focuses specifically on privacy concerns by attempting to establish a legal framework of fair practices for health information and to regulate its access, disclosure, and use. In discussions about such laws, George Annas (Boston University) suggested that genetic information should be regulated during sample collection and when it is stored, disclosed, and used.
Genetic Privacy in the Family
Because particular genes are more often shared by family members, genetic information on one person may also pertain to parents, siblings, and other relatives. For example, individuals who test positive for the allele associated with Huntington's disease must have one parent who also carries the same allele (except in rare cases of spontaneous mutations). Attendees asked, Does genetic privacy make sense when considered in the context of family?
Troy Duster (University of California, Berkeley) is investigating the interpretation and communication of genetic information in families of different cultural and socioeconomic backgrounds. He presented preliminary conclusions: (1) women are most often charged with communicating genetic information within families; (2) genetic testing during pregnancy is less likely to be perceived as threatening or stigmatizing if seen as routine rather than directed toward þat riskþ families; (3) men in all the socioeconomic and cultural groups studied are more likely to deny genetic conditions; and (4) family members are most likely to communicate about genetic conditions during a pregnancy and immediately following the diagnosis of a child.
Other grantees have been studying legal precedents for either protecting or disclosing genetic information among family members and the philosophical and legal basis for intrafamilial obligations. Aside from the parent-child relationship, no strong basis is apparent for such obligations. In the U.S. legal system, disclosure between spouses is not required, and physicians are allowed to override patient confidentiality only to avert a life-threatening situation or public peril. These points should be considered when asking whether genetic privacy may be breached: What is the harm to be averted? Will disclosure actually avert the harm? Is disclosure the only way?
DNA databanks, which can be any collection of cells or tissues, are another source of concern. Interest in forensic DNA databanks is growing, with 19 states having laws that authorize the collection of samples from convicted felons; 13 states have begun such collections. Jean McEwen and Philip Reilly (Shriver Center) reported widespread uncertainty about the types of sample releases that are legally or ethically prohibited. In the absence of clear guidelines, the temptation is to use samples collected for a purpose such as identification for a completely different purpose such as research. The joint working group is currently using information generated from grantee research to develop a set of guidelines that will help ensure confidentiality of databank materials. [Pilar Ossorio, LANL]
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Human Genome Program, U.S. Department of Energy, Human Genome News (v6n2).
The Human Genome Project (HGP) was an international 13-year effort, 1990 to 2003. Primary goals were to discover the complete set of human genes and make them accessible for further biological study, and determine the complete sequence of DNA bases in the human genome. See Timeline for more HGP history.
Published from 1989 until 2002, this newsletter facilitated HGP communication, helped prevent duplication of research effort, and informed persons interested in genome research.