Prospective participants for registries and/or biobanks may be concerned about privacy. Some worry that health information could be shared in a way that will harm them, and negatively affect their career, family and insurance. To address some of these concerns, Congress passed the Health Insurance Portability and Accountability Act (HIPAA) in 1996 and the Genetic Information Nondiscrimination Act (GINA) in 2008 to help protect health information.
It is important to ask the biobank or registry what regulations they follow. These vary greatly from institution to institution and there are no set standards for all institutions.
Participants should ask about the privacy and confidentiality policies of the biobank or registry and make sure they understand them.