The Honorable Louise Slaughter
U.S. House of Representatives
Washington, DC 20515
Dear Representative Slaughter:
The American Association for Clinical Chemistry (AACC) endorses your legislation, H.R.306, the Genetic Information Discrimination in Health Insurance Act of 1999, which would bar health insurers from discriminating against individuals on the basis of genetic information. Specifically, this bill would prohibit insurers from denying or canceling an insurance policy based on such information, or from changing the rates and conditions of the policy. AACC supports your approach.
Francis Collins, MD, the Director of the National Human Genome Research Institute, National Institutes of Health, recently testified before a congressional committee that more than 550 genetic tests are being used in the diagnosis of disease, including glaucoma, colon cancer, inherited kidney cancer and other disorders. Without the protections outlined in H.R. 306, many patients may refuse medically necessary genetic testing, because they are fearful that insurers may learn the test results and/or the nature of the test. Therefore, AACC believes it is essential that genetic data remain confidential between a patient and his or her physician.
AACC also is responding to a request that you made last year of our organization, the Association of Molecular Pathologists (AMP) and the College of American Pathologists (CAP). You requested that our groups develop a joint definition of genetic information. Our groups have accomplished that task and submit the following language for your review:
Genetic information is "information about genes and gene products derived from an individual or family members, which is used for one or more of the following purposes:
a. to predict risk of developing an inherited condition;
b. to diagnose an inherited condition that is currently expressed;
c. to identify carriers of an inherited condition;
d. to treat an inherited condition; and/or
e. for genetic counseling for an inherited condition."
By way of background, AACC is the principal association of clinical chemists--professional laboratory scientists--including MDs, PhDs and medical technologists. AACC's members develop and use chemical concepts, procedures, techniques and instrumentation in health-related investigations and work in hospitals, independent laboratories and the diagnostics industry nationwide. The AACC's objectives are to further the public interest and educational activities and help maintain high professional standards.
AACC looks forward to working with you in gaining passage of this important legislation. If we may be of any assistance, please call me at (405) 271-3571 or Vince Stine, Director, Government Affairs at (202) 835-8721.
K. Michael Parker, PhD