Ethics & Privacy
When it comes to collecting and storing your information for precision medicine research, it is important to understand how your data will be used, how your data will be kept private, and what effects if any, the research may have on you.
Certificate of Confidentiality
Research organizations are issued a Certificate of Confidentiality from the National Institutes of Health (NIH). The Certificate of Confidentiality states that sensitive information, such as your name and other personal identifiers, will be separated from your genetic information, and only approved persons can access your information that is collected as part of the research.
Informed consent is a process that is more than handing you a form to sign. Informed consent means that all the research concepts have been explained to you, you understand the terms of the research, and you willingly agree to participate.
You should feel free to ask questions during the informed consent process. The best way to know how your genetic information will be used, what your risks are in this process, and if the research study is right for you is to ask.
The Genetic Information Nondiscrimination Act (GINA) is a federal law that makes it illegal for health insurance providers in the United States to ask for or use your genetic information to make decisions about your health insurance eligibility, coverage, and premiums.
GINA also makes it illegal for employers to use your genetic information to make decisions about your employment status, benefits, or pay.
However, GINA does not provide protection:
- Against life insurance, long term care insurance, or disability insurance discrimination, and
- To certain groups:
- Members of the United States military
- Individuals enrolled in the Indian Health Service (IHS)
- Veterans receiving healthcare through the Veterans Administration (VA)
- Employers with fewer than 15 employees