The Politics of Women's Health

Genetics, Health, and Human Rights

Genetics used to be considered a subspecialty of medicine. Now some individuals in the medical and biotechnology fields view medicine as a subspecialty of genetics. Because this dominance is a growing trend in medicine and medical research, the media report daily on the role of our genes in everything from disease susceptibility, to sexual orientation, to criminal behavior, to even such things as our lifelong tendency to be optimistic or pessimistic. The centuries-old "heredity vs. environment" debate has now swung sharply to heredity.

Our Bodies Ourselves has joined others in criticizing this tendency toward the "geneticization" of our health and lives, toward "genism" and "genomania", terms that are used to convey an overzealousness to find genetic explanations for complex medical and social conditions. The public is receiving the message that genes are on a fixed trajectory and will produce inevitable results, instead of a message that underscores the inherent unpredictability of gene function. Even if a person is predisposed genetically to an illness or disease, usually other factors trigger the changes that set the disease process in motion.  In only a small fraction of illness and disease can genetic effects be specified in a predictable way. The overemphasis on genes opens the door to "blaming the victim":  if people become ill, the responsibility does not lie with the industries that poison our environment or the employers unwilling to invest in eliminating occupational health hazards. Rather, the locus of responsibility is shifted to the people who get sick because they have "bad genes." Yet, increasingly, research indicates that many, if not most, mutations to our genes result from environmental influences.

Because women continue to carry most of the burden of medical care decision-making as well as most of the caregiving responsibilities in their families, we believe women deserve high quality unbiased information about all genetic issues. Moreover, most of the controversial genetic testing thus far deal with conditions having the greatest impact on women: prenatal testing, tests for breast cancer, and tests for Alzheimer's disease.

We believe that much of the planned research and marketing of genetic tests and gene therapies should not proceed in advance of a wider public discourse on issues such as the following:

• What public policies will best ensure that we will control who has access to our tissue samples and the genetic information scientists derive from it?

• How can we better preserve the confidentiality of general medical records so that genetic information is released only with the consent of the individual to whom it refers?

• How can we prevent genetic tests from being marketed and widely used before their usefulness and the ethics of their use have been established?

• How does the pursuit of genetic tests, therapies, and "enhancements" affect our attitudes toward disability and our tolerance for difference and vulnerability among us all? How can we prevent genetic research from being used to further stigmatize particular racial and ethnic groups?

• How can we best ensure that genetic counselors do not pressure individuals to be tested or to take particular actions based upon test results? How do we ensure that no genetic testing is done without informed consent and thorough pre- and post-test counseling?

• What public policies will best prevent the misuse of genetic information and resultant genetic discrimination in insurance, housing, employment, child custody, medical care, and adoption?

• What are the most ethical ways to obtain samples for genetic testing (e.g., from blood and tissue) and make them available for research? Can informed participation and informed consent be assured and, if so, how?*

These matters are human rights issues and debate about them must involve all of us, not only scientists, medical specialists and ethicists, but policy makers, religious groups, disability rights activists, social scientists, health care consumers, public health workers. We are, after all, much more than the sum of our genes.

*For more information, see "Model Consent Forms and Related Information on Tissue Banking from Routine Biopsies" (PDF), compiled by the National Action Plan on Breast Cancer Tissue Banking Working Group.

Written by: Our Bodies Ourselves

< Return to The Politics of Women's Health Overview