Your Genetic Privacy and Confidentiality

Coriell takes your privacy and confidentiality very seriously, and the study has implemented several systems to ensure your genetic information is protected. As knowledge of, and access to, the human genome increases, genetic discrimination in matters concerning health insurance coverage and employment have been raised as valid concerns. Several public policy actions and laws intended to protect your genetic information have been enacted, as follows:

National Institutes of Health (NIH) Certificate of Confidentiality

The Coriell Institute has been granted a Certificate of Confidentiality under federal law (Section 301(d)) of the Public Health Service Act. This means that records from the CPMC research study may not be disclosed by Coriell Institute, under federal, state, or local court order, without your written approval.

National Privacy Laws

At the national level, the first official protection against genetic discrimination was granted in 1996 through the Health Insurance Portability and Accountability Act (HIPAA). HIPAA prohibits health insurers from excluding individuals from group coverage due to past or present medical problems, including genetic predisposition to certain diseases. The main limitation of HIPAA is that it does not provide any protection for individuals with private health insurance.

The Genetic Information Nondiscrimination Act

In May 2008, the Genetic Information Nondiscrimination Act (GINA) was signed into law. This law prohibits health insurers from canceling, denying or raising health insurance premiums based on a genetic predisposition to a specific disease. The measure also prohibits employers from using genetic information to hire, fire, promote or make any other employment-related decisions. Insurers and employers alike are denied the right to require genetic tests and collect the results without consent.

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