Genetic Testing: What You Need to Know

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How else might genetic information be used?

Patients, families, and health care professionals are not the only ones interested in genetic information. Here are some of the other groups who might use this information:

Medical and pharmaceutical researchers

Medical and pharmaceutical researchers are interested in low-cost access to genetic information and materials. This is why the pharmaceutical industry (companies that make medicines) has opposed donor ownership of genetic material. If a person owns their genetic information, the pharmaceutical companies might have to pay the donor for access to the information. Members of the pharmaceutical lobby have argued against people owning their own genetic information, stating it would drive up drug costs, which would be passed on to the consumer.

Today, medical researchers must get the individual’s informed consent before any studies of tissue samples and DNA can be done.

Insurers

Insurers also could benefit from access to genetic information.

In the past, health insurers could use this type of information when deciding who to cover and how much to charge for insurance. But this has changed. Federal law, based on the Genetic Information Nondiscrimination Act (GINA), no longer allows health insurers to base these decisions on the results of genetic information..

Note that GINA does not restrict use of genetic information for life insurance, disability insurance, or long-term care insurance. It also does not say that health insurers must pay for any particular genetic test or treatment.

Employers

Employers are allowed to ask for genetic testing when it is used to monitor exposure to potentially toxic chemicals and substances in the workplace. But discrimination and employment decisions based on genetic information are barred at the national level for most employers. GINA prohibits the use of genetic information in workplace employment decisions for non-governmental organizations. For more on GINA, see the section called “What are the benefits of genetic testing?


Last Medical Review: 10/18/2013
Last Revised: 10/18/2013