The Honorable Louise Slaughter
U.S. House of Representatives
Washington, DC 20515
The American Association for Clinical Chemistry (AACC) endorses your legislation, H.R.306, the Genetic Information Discrimination in Health Insurance Act of 1997, 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 strongly supports this approach. We believe it is essential that predictive genetic data remain confidential between a patient and his or her physician.
AACC does offer a suggestion for improving the legislation. Currently, H.R.306 defines genetic information as "information about genes, gene products, or inherited characteristics that may derive from an individual or a family member of the individual." This definition, by expanding legal protection to "inherited characteristics," becomes so encompassing that the majority of diagnostic test results could be classified as genetic information. We recommend that you modify the bill’s definition of genetic information to more accurately reflect the intent of the legislation—to prevent insurers from using "predictive" genetic information in making coverage decisions. Our recommended definition follows:
"information about genes and gene products intended to detect inheritable disease-related genotypes, mutations, or karyotypes for the purpose of predicting risk of future disease or identifying carriers of inheritable disease."
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 (717) 531-8316 or Vince Stine, Manager, Government Affairs at (202) 835-8721.
Laurence M. Demers, PhD, DABCC