Genetic Screening FAQ

A: The Healthy Nevada Project is one of the largest community-based population health programs in the world. Our goal is to understand factors that determine health outcomes—one of these factors is your genetics. We hope to learn how your genetics impact your personal health trajectory and use this information to help you and your healthcare providers make more informed decisions about your health.

A: No, you can enter the study at no cost. Participants receive clinical grade genetic sequencing and screening for three of the most common hereditary risks, as well as regional ancestry and wellness insights at no cost. If we find any genetic variants indicating an increased health risk in your DNA, you will be contacted directly regarding your results and be offered no-cost genetic counseling with a licensed genetic counselor to discuss your individual results. Any follow-up care or treatment required after the disclosure of your results, such as through your primary care provider, will be charged to you and/or your health insurance in the usual manner.

A: The Healthy Nevada Project is powered by Renown Health. Renown’s Institute for Health Innovation (Renown IHI) is a partnership between Renown Health and the Desert Research Institute. Renown Health is a locally governed and owned, not-for-profit integrated healthcare network serving Nevada, Lake Tahoe, and northeast California. Desert Research Institute is a recognized world leader in investigating the effects of natural and human-induced environmental change and advancing technologies aimed at assessing a changing planet.

During phase two, the personal genomics company, Helix, and a telegenomics technology and services company, Genome Medical, joined the project. Helix handles DNA sequencing and secure data storage while Genome Medical provides medically licensed genetic counseling to participants with positive findings.

A: The first phase of the Healthy Nevada Project (HNP) was launched in September 2016 with 10,000 Nevadans joining the study in partnership with 23andMe. In March 2018, the second phase of the project was introduced with our partners at Helix for a more clinically focused experience, inviting 40,000 more Nevadans to participate. In May 2019, the third phase of the HNP began to include Las Vegas and southern Nevada. The Healthy Nevada Project will continue indefinitely with an expectation of enrolling over 250,000 participants into the study.

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.