How will my information be used?
Your DNA and health information will become part of our genetic research databases. The information in these databases will be used by researchers to help us better understand the causes of certain conditions and how we can treat them more effectively.
The databases created by this program will be used for future research by Nebraska Medicine, our genomics partner Helix and other researchers. Any information shared outside our network does not contain information that directly identifies you and is carefully reviewed to ensure it is ethical, secure and protects your privacy.
How will you protect my privacy?
Your privacy is important to us. Here are some of the ways we protect your genetic information:
- Your information (genetic and ongoing health information from your Nebraska Medicine Medical Record) is stored in secure databases.
- We limit and closely monitor who can access your data. Researchers must be trained and certified to work with this type of research data.
- Your information is de-identified for research purposes, meaning researchers using the Network Database will not see information that could identify you, such as your name.
- You can choose to withdraw and stop sharing your information at any time.
Is my data shared with law enforcement?
Signing the research consent form does not mean that Nebraska Medicine | UNMC or Helix will share your research information with law enforcement. Nebraska Medicine and UNMC and Helix take genetic privacy very seriously and would only share your research information with law enforcement in connection with a valid legal process requiring disclosure of such data or where disclosure is required by law (like a valid warrant or court order). All such requests would be reviewed on a case-by-case basis and you would be notified of such a request before sharing of any data occurs unless Nebraska Medicine and UNMC or Helix is legally barred from doing so. Helix will object to any request that does not meet legal standards.
Will participating impact my health insurance?
To answer this very common question, it is important to know about a federal law that was implemented about 10 years ago called GINA (Genetic Information Nondiscrimination Act of 2008). GINA makes it illegal for health insurance companies and group health plans to discriminate against you based on your genetic information.
In addition, the Affordable Care Act of 2010 (ACA) prohibits health insurance companies from refusing to cover you or from charging you more simply because you have a “pre-existing condition.”
Will participating impact my life insurance, disability insurance or long-term care insurance?
While GINA provides protection related to health insurance and employers, GINA does not prohibit providers of life, disability and long-term care insurance from asking about and using genetic information. Some companies may require a review of your medical information, that may include genetic information returned to your medical record as part of participating in this study, prior to making a coverage decision. Some states do have additional protections for these types of insurance, so you may want to learn more about the laws in your state. If you already have a policy, new information about your health (including genetic information) generally may not be used to deny you continuing coverage under those policies.
Will participating impact my employment?
GINA makes it illegal for employers to make decisions about whether to hire or fire employees based on genetic information. The law also prohibits labor organizations from discriminating against an individual based on genetic information.
Note: GINA’s employment protections do not extend to all employees or in all circumstances. Additional information can be found here.