Genetic Testing Privacy

Privacy and discrimination in genetic testing are growing concerns as genetic tests increase in popularity. Genetic test results can enable individuals to determine their risk of developing many inherited diseases, which allows them to prepare themselves and take preventative measures against these disorders.

However, without DNA privacy rights in place, genetic testing could also give others the opportunity to invade their privacy by obtaining their genetic information. An individual’s right to privacy should include their most personal information, which includes the privacy of their genetic test results- and the test results of their children.

Genetic Testing for Families

Genetic testing has many benefits for children and their parents. Non-invasive and painless DNA tests can help reunite biological parents with adopted children, determine parentage and identify risk for many inherited conditions.

Genetic testing can determine a person’s risk of developing an inherited disease. Certain genetic markers are linked with certain inherited genetic disorders, including muscular dystrophy, congenital abnormalities and sickle cell anemia. Since a person’s genetic information does not change at all during their lifetime, DNA test results are relevant throughout a person’s entire life.

There are many types of genetic tests. Diagnostic tests confirm the diagnosis of a disease, such as sickle cell anemia. Prenatal testing can diagnose a disease in a baby before it is born. Pre-symptomatic testing can determine a person’s risk for getting a disease, such as breast cancer. Tests can also help to determine paternity and certain facts about a person’s ancestry.

Privacy and Discrimination in Genetic Testing

Often, the person being tested is not the only one who is interested in genetic test results. Employers, insurance companies and family members may be interested in obtaining results as well. If given a complete medical history, an employer could potentially (illegally) not hire an individual or terminate their employment after learning about a preexisting medical condition. If an insurance company knows the results of an individual’s genetic tests, the individual could be denied insurance or their policy could be canceled.

There are questions concerning the privacy of the home DNA test. Commercial companies that offer DNA tests could potentially offer results of genetic profiles to employers and insurers. However, California’s Department of Public Health recently ordered 13 companies that offered genetic testing to cease and desist. State law now requires that companies have fully certified laboratories and that customers can only request such tests with doctor’s orders. These companies will have to prove that they complied with these requirements.

Legal efforts to protect genetic information are similar to other types of medical records, which rely on doctor-patient confidentiality. If you are thinking about having your child take a genetic test, genetic privacy issues should not be a concern, since there are comprehensive laws in place which protect your child’s DNA privacy rights. The Health Insurance Portability and Accountability Act (HIPAA) was enacted to establish the security and privacy of health data. This act governs of the use and disclosure of information regarding any portion of a patient’s medical record.

In addition, in 2008, president Bush signed the Genetic Information Nondiscrimination Act of 2008 (Genetic Privacy Act), which prohibits employment discrimination on the basis of genetic information with respect to health insurance. A person’s confidential information can not be linked to an individual unless it is necessary to protect a third party.

Resources

Johnson, B. (2008). California clamps down on genetic testing industry. Retrieved December 8, 2008, from the Guardian.co.uk Web site: http://www.guardian.co.uk/science/2008/jun/19/genetics.usa.

Mehlman, M. (1999). The privacy of genetic information. Retrieved December 7, 2008, from The Doctor Will See You Now Web site: http://www.thedoctorwillseeyounow.com/articles/bioethics/geneticinfo_1/.