Genetic tests should be requested by doctors who know about genetic illnesses, the genetic tests available, the usefulness of these tests, and follow-up care. Other health care workers should be involved in the process of giving information and support throughout the testing process.

Health care professionals often need to learn about genetic testing. Few nurses have been taught more than basic genetic concepts. In much the same way, few doctors have specific training in cancer genetics. Though genetic counselors are available, not all of them have specialized training in cancer genetics, either. One way to ensure that these health care workers know about genetics and cancer is to require them to have a minimal standard of education or training.

The National Coalition for Health Professional Education in Genetics (NCHPEG) is a group of health care professionals whose mission is to be sure members know about new genetic information and technology. Such knowledge will probably become more important in the future. NCHPEG has also identified certain basic abilities that they recommend all health professionals should have in order to use information about genetics when teaching and caring for patients.

Who else is interested in genetic 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. But this is changing as health insurers are required to cover people who are tested and found to be more likely to get a disease, as well as those who are less likely to get the disease. 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 only 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. The federal law,Genetic Information Nondiscrimination Act or GINA, prohibits the use of genetic information in workplace employment decisions for non-governmental organizations.