Privacy & Genetic

Text from The National Human Genome Research Institute (NHGRI)


From the beginning of genetic research, scientists and the public alike have worried about its non-medical consequences. Questions arise about the privacy of an individual's genetic information, the ability of employers or insurers to screen potential workers or policy holders who might be susceptible to certain diseases because of their genetic makeup, and what laws or government regulations society might adopt to ensure the confidentiality of genetic information.

The National Human Genome Research Institute (NHGRI) supports highly technical genetic research that is rapidly advancing our understanding of the human genome. This new information, although potentially beneficial to the health of Americans, also has the potential to be misused. NHGRI created the Ethical, Legal and Social Implications (ELSI) Research Program in 1990 as an integral part of the Human Genome Project (HGP). Through the ELSI Research Program, NHGRI supports a variety of ethics- and policy-related research studies, workshops, and conferences to further explore and address such issues. One goal of the ELSI research program is to inform the development of federal guidelines, regulations and legislation to safeguard against misuse of genetic information.

The Policy and Program Analysis Branch, in the director's Office of Policy, Communications and Education analyzes and tracks federal and state policy, public policy and legislation that may have an impact on the mission of NHGRI, and helps to develop recommendations to the director for legislative proposals.

Privacy of Genetic InformationProtecting genetic information about individuals and their families.

Genetic Discrimination in Health Insurance or EmploymentThe potential use of genetic information to discriminate against people in the workplace and in health insurance.