Could you face genetic discrimination?

Tomorrow (January 30), at 10:30 am EST, the House Subcommittee on Health, Employment, Labor, and Pensions will hold a hearing on The Genetic Information and Nondiscrimination Act (GINA). If your Representative is not yet a sponsor of the bill--as mine is not--you may want to join me and encourage that person to sign on.

The list of sponsors can be found at This particular bill is even supported by President Bush. Details are available at

You can call (best option) or send an e-mail to your Representative. The time it takes is well worth it. Here are some details of interest--taken directly from the information provided by the Coalition for Genetic Fairness:

Why We Need GINA

1) We are all affected.

  • Each of us carries a handful of genetic anomalies. Some of those might cause us to be affected by genetic conditions. Some of those will not affect our health, but may affect the health of our children.
  • Currently, 1200 genetic tests exist which can diagnose thousands of health conditions. This number has grown from just 100 genetic tests 10 years ago. With more genetic tests in the pipeline, increased genetic information will become accessible through testing.
  • Genetic information is invaluable. It provides a key to our makeup that we can use to proactively manage our health. However, this same information may also be misused and put us at risk for genetic discrimination. Cases of genetic discrimination have already been documented in the United States, and without laws to address the issue adequately, such cases will likely continue.
  • We need legal protection so that all Americans are free to put their health concerns first without fear of discrimination.

2) Current laws do not adequately protect us from genetic discrimination.

  • The current patchwork of state laws leaves individuals vulnerable. A few states have strict protections against genetic discrimination, but most states have little to no protection. This leaves individuals with little knowledge about how much their genetic information is protected from state to state. In addition, companies who deal in any kind of health information are left with no national framework to guide how they handle genetic test results and genetic information privacy.
  • Genetic information is not properly covered under HIPAA privacy guidelines. Current HIPAA guidelines do not prohibit insurers from requiring genetic testing or from denying coverage based on genetic information. Genetic information is becoming increasingly more ingrained in medicine, and as such, will serve to complicate privacy law if steps are not taken now to close gaps in policy.

3) We all lose under current guidelines.

  • Fear of misuse of genetic information is preventing people from getting genetic tests done. Refusal to utilize effective genetic tests hurts individuals, researchers, doctors, and companies. Individuals’ lack of testing denies them important medical information that they could otherwise use to proactively manage their health. The information garnered by genetic tests also helps doctors to prescribe treatments and lifestyle changes with increased success. The same information can be used by researchers to effectively create targeted drugs and develop treatments. In addition, companies developing these important tests cannot recoup research costs, and therefore, are unable to invest in further development.
  • Fear of discrimination is also causing a large number of people to opt out of clinical trials. Fewer participants in clinical trials leads to slower development of treatments and beneficial drugs. With the exponential increase in genetic tests being developed, lack of participation in trials will most likely prove to be a severe limiting factor. In addition, clinical trials provide patients in late stages of disease with access to breakthrough treatments that would normally be unavailable.

4) We can all benefit from protections offered in the Genetic Information Nondiscrimination Act.

The Genetic Information Nondiscrimination Act protects all Americans by:

  • Prohibiting insurers in both the group and individual health insurance market from 1) “requesting or requiring” genetic testing of an individual or his family or 2) using genetic information to determine eligibility or establish premiums.
  • Prohibiting employers, including employment agencies and labor organizations, from 1) “requesting or requiring” genetic testing of an individual or his family or 2) using genetic information to make hiring or promotional decisions, or when determining eligibility for training programs.

Americans support the Genetic Information Nondiscrimination Act. An overwhelming majority of Americans (85%) believe that if someone has a genetic test, their employer should not have the right to know the results. Republicans, Democrats, and individuals from all racial and ethnic groups, religions, and income and education levels share this opinion. [Survey conducted in 2002 by the Genetics and Public Policy Center, Johns Hopkins University.]

Marie Godfrey, PhD

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