Building Careers and Shaping Public Policy

18 June 2003

The Honorable Judd Gregg Chairman,
Committee on Health, Education, Labor and Pensions
United States Senate
Washington, DC 20510

Dear Mr. Chairman:

The Institute of Electrical and Electronics Engineers-United States of America (IEEE-USA) commends the Senate Committee on Health, Education, Labor & Pensions for the progress made in relation to S. 1053, the Genetic Information Nondiscrimination Act of 2003, and we strongly support the development of such critical legislation. We would like to encourage consideration of three critical additions:

1. An individual's health record includes information about genetic diseases or pre-disposition to genetic diseases that would not be captured under the bill's definition of "genetic information." Since medical science's ability to infer genetic information from routine medical data continues to increase, the IEEE-USA feels that a broad definition protecting the majority of an individual's health information should be used.
2. Regardless of whether a person has a predisposition to a disease or a manifestation of that illness, they should be equally protected against discrimination under the law.
3. Reducing the economic incentives for genetic discrimination is the key to successful prevention and permitting points one and two above. This requires enacting adequate legislation to support guaranteed enrollment and uniform health insurance rate structures, indexed by geography, age and sex.

IEEE-USA recognizes that the American public needs to be able to embrace the increasing health benefits provided by genetic information without fear of consequent discrimination. Protection against such discrimination is essential for the adoption of new genetic technologies, the advancement of genetics research, and the realization of personalized medicine that improves outcomes and decreases suffering. Attached is our position statement, Nondiscrimination in Employment Based on Genetic and Other Health Information (http://www.ieeeusa.org/forum/POSITIONS/geneticinformation.html), which provides our additional thoughts on the use of genetic and other health information.

IEEE-USA is an organizational unit of The Institute of Electrical and Electronics Engineers, Inc., created in 1973 to promote the careers and public-policy interests of the more than 235,000 electrical, electronics, computer and software engineers who are U.S. members of the IEEE. If we can be of further assistance, please contact Deborah Rudolph in our Washington office at (202) 785-0017 x 8332 or email at d.rudolph@ieee.org.

Sincerely,

James V. Leonard, P.E.
2003 IEEE-USA President

(Sample of Letter Sent to Senate Committee on Health,
Education, Labor and Pensions)