What is Genetic Discrimination?

Genetic discrimination refers to treating a person differently on the basis of genetic information. It is most often discussed in reference to insurance or employment, since genetic information could be used to figure out if an individual will develop or is at higher risk for an inherited disorder. If a person chooses to have a genetic test, the result is recorded in his or her medical record. In cases where third parties have access to the record, the information may be used in any number of decisions, such as whether to insure the person, whether to contest their claims for work-related injury compensation, or how high to set their insurance premiums. There is some debate as to whether this information falls into a different category from other medical information, thus resulting in unfair genetic discrimination.

For example, a woman with a family history of breast cancer might choose to have herself tested for a mutation in the BRCA1 or BRCA2 genes. If the results show that she is a carrier of the mutation, she is at a much higher risk for developing breast and ovarian cancer. If she then applies for a life insurance policy, the insurer may choose, based on the results of the test, to demand a higher rate for her policy in comparison with someone in similar circumstances who didn't choose to have the test. The insurer may even choose not to carry her at all.

It is unclear how much of a problem genetic discrimination is, since laws vary from country to country. Many studies on the subject have relied heavily on the subjective statements of people who believe they have been unfairly discriminated against. Additionally, some feel that genetic information is a valid indicator of risk and that it should be disclosed to interested parties such as employers or insurers.

Among medical ethicists, though, the concern is that fear of genetic discrimination will prevent people from seeking out tests that could be key to their future health. Through genetic counseling after the exam, doctors can offer patients some instruction on ways to mitigate risk, early warning signs to look for, and a chance to ask questions about related issues, such as whether to have children who might inherit the same genetic problem. There is also concern about the possibility of people being compelled to undergo genetic testing in certain cases, whether they wish to know their likelihood of developing certain diseases or not.