Headache Program

A: Unless explicitly stated differently in the Informed Consent for the Healthy Nevada Project, we follow the privacy policies of Renown Health. Any data obtained from your participation in this study is used for research purposes as outlined in our Notice of Privacy Practices.

A: To help us protect your privacy, we have obtained a Certificate of Confidentiality (CoC) from the National Institutes of Health. The researchers can use this Certificate to legally refuse to disclose information that may identify you in any federal, state, or local civil, criminal, administrative, legislative, or other proceedings, for example, if there is a court subpoena. The researchers will use the Certificate to resist any demands for information that would identify you.

It is also important to note that all information is de-identified for research purposes. Your accounts with Helix and the products you may receive or purchase in the Helix Store are not accessible to any researcher at Renown or DRI. Helix will only share the parts of your genome that are relevant to this study with the Healthy Nevada Project. If researchers make findings that are deemed important to communicate back to individuals and you consented for us to do so, the Principal Investigator will be able to re-identify you for the purposes of communicating this vital information back through trained medical staff. Examples of this information are increased risk of developing serious diseases such as cardiovascular disease or cancer.

Federal and state laws are in place to protect your protected health information (PHI).

A: No, it will not. The Healthy Nevada Project is a research study and not a publicly available database. Any data shared with approved research partners is kept de-identified to maintain your privacy.

A: The Genetic Information Nondiscrimination Act of 2008 (GINA) is a federal law that protects individuals from genetic discrimination in health insurance and employment. With GINA’s protections, you can feel comfortable talking about family health history with your family and healthcare providers.

GINA legally forbids health insurers to request, require, or use genetic information to make decisions about your eligibility for health insurance and your health insurance premium, contribution amounts, or coverage terms. This means that it is against the law for your health insurer to use a genetic test result, or family health history, as a reason to deny you health insurance or decide how much you pay for your health insurance. However, GINA does not cover life insurance, disability insurance, or long-term care insurance.

To learn more about how you are and are not protected, visit ginahelp.org.

A: The stored genetic information collected as part of the Healthy Nevada Project (HNP) is maintained as de-identified data and only interpreted genetic results are included in a participant’s Renown Health designated medical record. Even if law enforcement were to subpoena a HNP participant’s medical record from Renown Health, they would not receive any individually identifiable genetic information. If an attempt were made to obtain individually identifiable genetic information directly from the HNP, HNP would legally oppose such attempts as well as give the individual HNP participant legal notice and an opportunity to object to such efforts.

A: There have been NO known cases of law enforcement contacting a private company like Ancestry, 23andMe or Helix. This would be unprecedented.

A: There are very specific edge cases that might be adjudicated in a court where law enforcement could perhaps attempt to break our Certificate of Confidentiality: subpoenas related to child endangerment, capital murder, etc., as yet this has never occurred.

A: Our Informed Consent Form will inform you about your involvement in this study. You can review the consent form on healthynv.org. We will ask you to sign a copy before or during your appointment.