Written by: Jamie Fernandez, B.Sc Hons. in Genetics, Content Specialist
If all you know about genetic testing comes from the 1997 movie, Gattaca, you may have many questions about the ethics of genetic testing. Rest assured, this movie is pure fiction and fails to represent the laws and policies in place to protect your genetic data.
The first point to discuss is autonomy and informed consent for genetic testing. Respect for autonomy implies that is a person’s choice to have their DNA tested as well as what is done with their genetic information. Ethically, a person must have the right to make an informed decision regarding the sharing of their genetic information for example sharing it with a healthcare provider, a spouse or a researcher.
Next, let’s discuss laws that dictate the privacy associated with genetic testing. The Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule covers laws and regulations that apply to “health information.” Since the Genetic Information Nondiscrimination Act (GINA) defines genetic information as health information, the HIPAA Privacy Rule applies to genetic testing. Although these laws are only applicable in healthcare settings in the US, they do form a gold standard for how to protect genetic privacy.
In South Africa, our HIPPA equivalent is the Protection of Personal Information Act (POPI), which was passed in 2013. Unfortunately, this act does not specify laws that dictate privacy regarding DNA testing outside the context of biometrics (the technique of personal identification).