PRIVACY AND FAIRNESS IN THE USE AND INTERPRETATION OF GENETIC INFORMATION

"NIH-DOE ELSI Working Group Task Force on Genetics and Insurance (ITF)"
Project Date: May 1991 to May 1993 (Co-sponsored with DOE)

In January 1991, the ELSI Working Group decided that a Task Force on Genetics and Insurance (ITF) to be co-chaired by members Tom Murray and Jon Beckwith, was necessary to gather relevant information and to prepare a report of policy options to prevent discriminatory uses of genetic information by insurance companies and insurance purchasers. The Task force was comprised of representatives from the Insurance industry, corporate benefit plans, consumer and health voluntary groups, and scholars actively research issues. The Task Force published its on May 10, 1993.

"Analysis of Interpretation of the Americans With Disabilities Act by the Equal Employment Opportunity Commission."
Guidance Issued: 3/15/95 (Co-sponsored with DOE)

Members of the ELSI Working Group and the ELSI Program staff had numerous interactions with the U.S. Equal Employment Opportunity Commission (EEOC) expressing concerns about the lack of employment protections in place for individuals who might be identified to have genetic predisposition to disease. There were fears that although individuals with disabilities would be protected from discrimination under the Americans with Disabilities Act (ADA), individuals who were suspected or known to have a genetic predisposition to develop a disability or have children with disabilities would not be protected. As a result of these discussions and the Commissioners' deliberations, the EEOC provided guidance on March 15, 1995 that clarified that protection under the ADA extends to individuals who may be discriminated against in employment decisions based on genetic information about the individual.

"NIH-DOE ELSI Working Group and National Action Plan on Breast Cancer Workshop on Genetic Discrimination and Health Insurance."
Meeting was held July 19, 1995 on the NIH Campus in Bethesda, Maryland (Co-sponsored with DOE & NAPBC))

Scientists, representatives from the insurance industry and members of the ELSI Working Group and the NAPBC participated in this 1-day session focusing on genetic discrimination and health insurance. Based on the information presented at the workshop, the ELSI Working Group and the NAPBC developed a series of recommendations and definitions for state and federal policymakers to protect against genetic discrimination.

"NIH-DOE ELSI Working Group and National Action Plan on Breast Cancer Workshop on Genetic Discrimination and the Workplace: Implications for Employment, Insurance and Privacy."
Meeting was held October 4, 1996 in Bethesda, Maryland (Co-sponsored with DOE & NAPBC)

Members of the ELSI Working Group and the NAPBC, genetics and health care professionals, lawyers, representatives from the insurance industry, and representatives from a number of Federal agencies participated in this 1-day workshop focusing on genetic discrimination and the workplace. Based on the information presented at the workshop, the ELSI Working Group and the NAPBC developed a series of recommendations to protect against genetic discrimination in employment decisions.

"National Human Genome Research Institute and National Action Plan on Breast Cancer Workshop on Privacy and Confidentiality in Genetics Research."
Meeting was held September 16-17, 1997 in Bethesda, Maryland (Co-sponsored with NAPBC)

The NHGRI, NAPBC, genetics and health care professionals, legal and judicial representatives, representatives from the insurance industry, and representatives from a number of Federal agencies participated in this 2-day workshop focusing on privacy and confidentiality of information in genetics research. The purpose of this workshop was to address key unresolved issues identified at a June, 1997 Planning Meeting and to develop a set of policy recommendations.