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Human Genome News Archive Edition

Human Genome News, March 1991; 2(6)

ELSI Working Group Examines Progress

The NIH-DOE Working Group on the Ethical, Legal, and Social Issues (ELSI) related to mapping and sequencing the human genome met on January 7-8 in Crystal City, Virginia. The purpose of the meeting was to examine progress in policy development on three sets of professional and public policy issues identified as high priority for the NIH-DOE ELSI program:

  • protecting the confidentiality of genetic information;
  • facilitating responsible integration of new genetic tests into clinical practice; and
  • promoting fairness in genetic information use, especially by insurers and employers.

Privacy Issues Addressed

Madison Powers (Georgetown University) spoke on legal protection of confidentiality and privacy, including the Federal Privacy of Genetic Information Bill (H.R. 5612, 101st Congress, 2nd Session) introduced by Representative John Conyers, Jr., D-Michigan. Powers described the current network of federal, state, and regulatory protections and identified gaps in the ability to maintain medical record confidentiality.

Mark Rothstein (University of Houston) addressed the implications of the Americans with Disabilities Act (ADA) in the use of genetic information for employment screening. He concluded that ADA provides discrimination protection to disease-gene carriers and to those suffering from genetic disabilities. Rothstein shared the recommendations he made to the Equal Employment Opportunity Commission for developing regulations that would make these protections explicit.

Lori Andrews (American Bar Foundation) discussed several avenues for stimulating model legislation at the state level and for providing input into federal regulation development. Patricia King (Georgetown University Law Center) agreed to assume responsibility for coordinating further initiatives in this area.

Genetic Testing and Insurance

Jude Payne [Health Insurance Association of America (HIAA)] presented the insurance industry's views on using genetic tests in underwriting practices. She concluded that no particular genetic test is likely to be cost-effective enough to use as a routine insurance screen; however, if medical screening increases, insurers will have to decide whether to include such information in their underwriting decisions. She announced the formation of an HIAA working group on genetic testing to help develop industry policy over the coming months.

Margaret Anderson [Office of Technology Assessment (OTA)] discussed a survey of insurance companies that is a component of an upcoming OTA cystic fibrosis (CF) study. This study will assess the significance of genetic information in current underwriting practices and clarify the plans and policies of individual insurance companies with respect to genetic information.

Philip Reilly (Eunice Kennedy Shriver Center for Mental Retardation) discussed the need for research on insurance issues and the role of state insurance regulation in protecting against unfair use of genetic information by insurers. Because much U.S. health insurance is provided by self-insuring large employers not governed by state laws regulating commercial firms, legislation may need to be extended to cover these self-insurance plans.

The ELSI working group plans to help coordinate initiatives in this area by forming an Insurance Task Force that will include representatives from the insurance industry, corporate benefit plans, consumer and health groups, and scholars actively researching these issues. Tom Murray (Case Western Reserve University) will serve as chair.

Genetic Services and Medical Practice

ELSI staff reported on several initiatives that evolved from the September 1990 ELSI workshop, which focused on issues related to the clinical introduction of new genetic tests. Together, these initiatives should help establish a sound professional foundation for the provision of emerging genetic services; the working group will follow them closely.

  • National Center for Human Genome Research (NCHGR) has taken a lead role in organizing an NIH-wide response to the need for pilot studies on how best to deliver DNA-based carrier testing for CF.
  • NCHGR and DOE have initiated a major study by the National Academy of Sciences and the Institute of Medicine to help assess and establish standards of care and quality-control mechanisms for the delivery of new genetic services.
  • Neil Holtzman (Johns Hopkins School of Medicine) informed the group about his NCHGR-supported study of primary-care physicians' preparedness for handling various aspects of genetic testing.
  • Robyn Nishimi (OTA) discussed the upcoming OTA project on screening for CF. The project goal is to use CF testing as a model for policy issues that will arise as new genetic tests are integrated into medical practice.

Public Education

In addition to the substantive issues outlined in the article above, one high-priority activity for the working group is to promote public education and the discussion of Human Genome Project issues. As part of this effort, NCHGR is contributing to the funding and DOE is considering cosponsorship of a public television series, "The Future of Medicine," whose objective is to examine the philosophical, social, and scientific significance of medicine in human life.

Because data produced by the Human Genome Project will affect the practice of medicine, the working group seeks to make accessible to the public the scientific basis of the project and its ethical, legal, and social implications. Attending the workshop were the series' producers from WNET (New York City) and the British Broadcasting Corporation, who updated the working group on their progress and requested advice on how to improve their message and delivery. The series is slated to air in the 1992-93 season.

Reported by Eric T. Juengst, Director
Ethical, Legal, and Social Implications Program

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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.

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