Sponsored by the U.S. Department of Energy Human Genome Program
Human Genome News Archive Edition
The Genetic Privacy Act is a proposal for legislation governing collection, analysis, storage, and use of DNA samples and the genetic information obtained from them. This first legislative product of the U.S. Human Genome Project's Ethical, Legal, and Social Issues (ELSI) component was presented to the DOE-NIH Joint ELSI Working Group in December 1994. Drafted as a federal statute to provide uniformity, the act has been introduced into six state legislatures. It could also be used as a guideline by professional societies until Congress acts. George Annas, Leonard Glantz, and Patricia Roche (Boston University School of Public Health) authored the proposal with funding from the DOE ELSI program.
The Genetic Privacy Act complements and moves beyond current federal proposals for protecting medical information. It would require explicit authorization to collect DNA samples for genetic analysis, limit uses of the samples and genetic information obtained from them, and set forth penalties for violations. The act aims to protect individual privacy while permitting genetic analysis for medical and identification purposes and legitimate research.
Under the act, anyone who collects a DNA sample such as blood, saliva, hair, or other tissue for genetic analysis is required to
Special rules regarding DNA sample collection and research are set forth for minors, incompetent persons, pregnant women, and embryos. Research is permitted on nonidentifiable samples when not forbidden by the sample's source; on individually identifiable DNA samples, research is prohibited unless specifically authorized by the source.
The overarching premise of the act is that no stranger should have or control identifiable DNA samples or genetic information about an individual unless the source specifically (1) authorizes the collection of DNA samples for analysis and the creation of genetic information and (2) retains access to and control over its dissemination. Rules protecting genetic privacy must be clear and made known to the medical, scientific, business, and law enforcement communities and the public. [Contact: Marilyn Ricciardelli (617/638-4626, Fax: -5299, firstname.lastname@example.org)]
Anne Adamson, HGMIS
Congress recently protected genetic information derived from DNA samples held by law enforcement agencies for identification purposes (P.L. 103-322, Section 210305: Violent Crime Control and Law Enforcement Act of 1994). This law would not be affected by the Genetic Privacy Act.
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Human Genome Program, U.S. Department of Energy, Human Genome News (v6n6).
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.
Published from 1989 until 2002, this newsletter facilitated HGP communication, helped prevent duplication of research effort, and informed persons interested in genome research.