5115.0: Wednesday, October 24, 2001 - 12:50 PM

Abstract #22085

Examining the schism between state and federal laws concerning the disclosure of individual genetic information

Deborah A. Reichmann, JD, MPH1, Deborah Steinbach, MA1, Tieu Luu1, and Regina el Arculli, MA2. (1) Legislative Analysis Group, The MayaTech Corporation, 8737 Colesville Road, 7th Floor, Silver Spring, MD 20910, 301-587-1600, deborahr@mayatech.com, (2) Office of Legislation and Congressional Activities, National Cancer Institute, Building 31, Room 10A-35, 31 Center Drive, MSC 2580, Bethesda, MD 20892-2580

In December 2000, federal regulations governing the dissemination of personal medical data were issued. These regulations will require an individual's written consent before divulging health information, and will apply to insurance companies, physicians and their business associates. As researchers advance understanding of the human genome, legislators have responded with laws designed to protect against the misuse of genetic information. State legislatures have been active in this arena for most of the last decade of the 20th Century. The federal government has also initiated regulations in this regard.

Using data from the National Cancer Institute's State Cancer Legislative Database (SCLD) Program, in addition to published laws and regulations of the federal government, this presentation will compare federal and state safeguards for genetic information with the protection afforded other medical information. A qualitative analysis will be performed on state and federal laws in the areas of authority, definition of genetic material, enforcement and resulting implications. Emphasis will be placed on determining the scope of protection captured by the laws.

See www.scld-nci.net

Learning Objectives: At the conclusion of the presentation, participants will be able to: 1) identify the variations among genetic confidentiality laws, 2) compare the variability across state and federal regulatory schemes, and 3) understand how genetic information is regulated differently from general medical information.

Keywords: Genetics, Legislative

Presenting author's disclosure statement:
Organization/institution whose products or services will be discussed: National Cancer Institute State Cancer Legislative Database Program
I have a significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.
Relationship: National Institute/Contract

The 129th Annual Meeting of APHA