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Human Genome News Archive Edition

Human Genome News, July 1993; 5(2)

DOE ELSI Program Emphasizes Education, Privacy

For the last 3 years, the DOE Human Genome Program, administered through the Office of Health and Environmental Research (OHER), has devoted 3% of its funding to the study of ethical, legal, and social issues (ELSI) surrounding data produced by modern genetic research. OHER has placed special emphasis on promoting public education about such research and on defining related privacy and confidentiality issues.

This commitment was prompted by the early realization that, although the potential benefits of human genome research are abundant, the availability and use of large volumes of genetic information will raise very challenging personal and social questions. Among these concerns are the ability to predict future illnesses well before any symptoms or medical therapies exist; the privacy and confidentiality of genetic information with respect to employers, insurers, direct marketers, banks, credit raters, and many others; the accessibility of large amounts of genetic information in data banks; and the possible discriminatory misuse of genetic information. One potential unwanted outcome of the Human Genome Project is that genome research and the wide use of genetic screening could promote a new genetic underclass and, therefore, a host of new societal conflicts.

The OHER ELSI component is independent of but complementary to the ELSI activities of the human genome program managed by the NIH National Center for Human Genome Research (NCHGR). To avoid unnecessary duplication of effort, OHER and NCHGR have initiated a number of collaborative activities: the Joint ELSI Working Group, which periodically consults with NIH and DOE program staff and assists in ELSI program coordination; the Joint DOE-NIH ELSI Grantee-Contractor Workshop held in September 1992 in Arlington, Virginia [See HGN 4(5), 5-6 (January 1993)]; and some projects described below that are jointly supported by OHER, NCHGR, other agencies and organizations, and commercial companies. One such collaborative effort, just concluding, is a major study by the Institute of Medicine entitled "Assessing Genetic Risk," which reviews issues arising from the introduction of new genetic tests into medical practice in the near future.

Education To Promote Public Understanding

In keeping with its commitment to education, DOE OHER is supporting a set of exhibits on genetics and the Human Genome Project at the San Francisco Exploratorium; linked to these exhibits will be a DNA-extraction demonstration and a lecture series on ELSI. Paula Gregory (University of Michigan) and Debra Collins (University of Kansas) are conducting workshops for high school science teachers in molecular genetics, biotechnology methods, and societal implications inherent in genome research. Some workshop laboratory exercises are based on the OHER-funded Biological Sciences Curriculum Study (BSCS) Mapping and Sequencing the Human Genome: Science, Ethics, and Public Policy (mailed to U.S. high school biology teachers).

Joseph McInerney (Colorado College), the principal investigator for the BSCS module, has begun work on another unit focusing on genetic database design and utility and the effects of accumulating large amounts of information in computer-accessible form. This module, which will include software, is also intended for distribution to high school biology teachers throughout the United States.

Several OHER-funded ELSI projects that have concluded or are nearing completion should be yielding results soon. In April the four-part documentary series "Medicine at the Crossroads" was broadcast on WNET; a WGBH series "The Secret of Life" is scheduled for four consecutive evenings beginning September 26 on U.S. public television stations (check local listings).

Genetic Privacy Issues

The OHER ELSI program is focusing on a broad range of genetic privacy issues from the perspectives of several disciplines, including philosophy, social science, and law. Through grants and commissioned papers, the program supports both analytical and empirical research projects, most of which involve comparative studies. These studies contrast such factors as attitudes toward genetic privacy in different populations; the need for appropriate measures to protect genetic information in various contexts; and evolving policies of private institutions and state, federal, and foreign governments in this area.

Multidisciplinary research teams are customarily involved in grants related to genetic privacy. Collaboration among disciplines is also encouraged by periodic meetings for research discussions among principal investigators and commissioned-paper writers. The objective of these collaborations is to promote a comprehensive approach to issues and methodologies and assist policymakers in determining appropriate protection mechanisms for personal genetic information. OHER-funded projects and papers on genetic privacy are described briefly below.

A philosophical study of privacy, with particular attention to genetic information, will provide a conceptual foundation for analyzing and resolving issues of genetic privacy [Madison Powers (Georgetown University)]. Another study will relate existing social science work on privacy to anticipated genetic privacy issues [Alan Westin (Columbia University)]. This study will also examine current privacy-protection measures, debates over the need to update privacy protection, and implications for social and legal policies to deal with expected future genetic testing and applications of genetic data.

Ongoing empirical studies compare (1) attitudes toward genetic information in different cultural contexts [Troy Duster (University of California, Berkeley)] and (2) ethical and social facets of genetic screening programs mandated in various states [Ralph Trottier (Morehouse School of Medicine)]. Both studies will explore privacy concerns of the affected populations. Another empirical study by Marvin Natowicz and Carol Barash (Shriver Center) is examining genetic discrimination experienced by individuals in dealing with social institutions such as employers, insurers, and schools. Results of the studies may indicate a need to protect against certain disclosures or uses of genetic information.

A recently completed survey by Philip Reilly (Shriver Center) has found that state legislative efforts to regulate the use of genetic information are increasing, particularly in employment and insurance, but major gaps and deficiencies in statutory coverage persist. Another survey by Reilly showed that life insurance companies are more interested in obtaining existing genetic test information than in performing tests on applicants. Company ratings based on genetic conditions reflect a considerable degree of subjectivity rather than actuarial data.

A study by Frank Grad (Columbia University Law School) is examining the rationale for the protection of genetic information, balancing the individual's right to confidentiality against the values of disclosure to protect public health and the interests of blood relatives and intended spouses. Franklin Zweig (George Washington University) is leading an 18-month effort to produce a judges' reference book for cases involving genetic testing and gene therapy.

Two new studies focus on the growing practice of banking individuals' DNA or genetic data in forensic, academic, military, and commercial settings [Reilly; George Annas (Boston University Law School)]. These studies involve empirical research on the handling of privacy in these settings and analysis to develop and refine proposed policies and guidelines.

A commissioned paper by Lori Andrews (American Bar Foundation) will explore genetic privacy in the context of familial responsibilities. Another paper will compare protection of personal data under civil and common law in foreign countries and the relevant declarations of several international organizations [Bartha Knoppers (University of Montreal)].

Efforts have begun for communicating issues identified in these studies to public policymakers so foreseeable problems surrounding the availability of genetic information can be avoided.


[Daniel W. Drell, OHER Human Genome Program, and Michael S. Yesley, Los Alamos National Laboratory]

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Human Genome Project 1990–2003

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.

Human Genome News

Published from 1989 until 2002, this newsletter facilitated HGP communication, helped prevent duplication of research effort, and informed persons interested in genome research.