What were some of the ethical, legal, and social implications addressed by the Human Genome Project?

The Ethical, Legal, and Social Implications (ELSI) program was founded in 1990 as an integral part of the Human Genome Project. The mission of the ELSI program was to identify and address issues raised by genomic research that would affect individuals, families, and society. A percentage of the Human Genome Project budget at the National Institutes of Health and the U.S. Department of Energy was devoted to ELSI research.

The ELSI program focused on the possible consequences of genomic research in four main areas:

• Privacy and fairness in the use of genetic information, including the potential for genetic discrimination in employment and insurance.

• The integration of new genetic technologies, such as genetic testing, into the practice of clinical medicine.

• Ethical issues surrounding the design and conduct of genetic research with people, including the process of informed consent.

• The education of healthcare professionals, policy makers, students, and the public about genetics and the complex issues that result from genomic research.

For more information about the ELSI program:

Information about the ELSI program at the National Institutes of Health, including program goals and activities, is available in the fact sheet Ethical, Legal and Social Implications (ELSI) Research Program from the National Human Genome Research Institute. The ELSI Planning and Evaluation History web page provides a more detailed discussion of the program.

The U.S. Department of Energy Office of Science offers two fact sheets on the ELSI program, each of which includes links to many additional resources:

• Ethical, Legal, and Social Issues

• Ethical, Legal, and Social Issues Research

More discussion about ethical issues in human genetics, including genetic discrimination, the cloning of organisms, and the patenting of genes is available from the Centre for Genetics Education.

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