Bioethics Blogs

How private should genetic information be?

One of the issues regarding genetic testing is the privacy of that information. It has been recognized for some time that employers and others could use genetic information in ways that would cause problems for those whose genetic information they were able to access. Because of that the federal Genetic Information Nondiscrimination Act (GINA) and the Americans with Disabilities Act (ADA) prohibit employers from asking employees to have genetic testing done. According to a recent article in the National Law Review, there is a bill currently in Congress, HR 1313 that would exempt employers from the restrictions of the GINA and ADA if the testing is being done as part of a workplace wellness program. Employers would be able to require employees to have genetic testing done as a part of the program and employees who refused would be subject to a significant increase in their health insurance premiums.

I think there are significant moral concerns about this change. Privacy regarding medicine information and genetic information in particular is important. People should be able to choose who they allow to have that information and they should be able to choose whether they want to undergo genetic testing. There are situations in which people would prefer not to know some things. There are limits to privacy and when another person is act risk of harm. Privacy may be less important than preventing harm to that person. However, workplace wellness programs which may be well meaning and may provide some benefit to the employees are being done as much for the benefit of the employer to try to lower health care costs as they are for the employees.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.