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The Society for Women's Health Research supports a ban on discrimination by health insurers and employers on the basis of predictive genetic information.

Over the past several years, remarkable advances have been made in the field of human genetics that hold extraordinary promise for improving the health and quality of life of millions of Americans. Scientists can use predictive genetic testing to determine an individual's susceptibility to illnesses such as breast and ovarian cancer, colon cancer, amyotrophic lateral sclerosis (ALS), and Alzheimer's disease. The availability of this information can help people make informed decisions about prevention and treatment options, and allow them to live longer and healthier lives.

However, the ability to determine genetic predisposition to disease can also have negative repercussions. Many people who might be helped by genetic testing are afraid to take advantage of this medical technology because of fears that their genetic information will be used against them. Health insurers may deny coverage to individuals who carry genetic mutations that may cause them to develop serious or debilitating diseases later in their lives. As a result, many individuals choose not to undergo genetic testing or to take part in medical research.

The Society opposes discrimination that leads to adverse health consequences. The Society is particularly concerned about the impact of genetic discrimination on the participation of women in clinical trials. For over a decade, the Society has worked to secure the inclusion of women in medical studies, and to encourage them to take part in this research. However, women will be reluctant to enroll in clinical trials if they fear that their medical information will be used against them by health insurers and employers. Without a guarantee of protection from genetic discrimination, all of the progress that has been made in ensuring that women have access to clinical trials will be of little value, and both women and research will suffer.

  

Last updated: July 22, 2004