A: The Healthy Nevada Project is a population health study. Our goal is to understand factors that determine health outcomes—one of these factors is your genetics. We hope to learn about how your genetics impact your personal health trajectory and use this information to help you make better decisions about your health.
A: The Healthy Nevada Project is managed by the Renown Institute of Health Innovation. This institute was created as a partnership between Renown Health and the Desert Research Institute (DRI). The genetic testing component of our study is powered by Helix.
A: We learned from the pilot study that we needed to integrate the Healthy Nevada Project into clinical care. In order to do this, we needed a vendor that could provide clinically actionable results to enrolled patients, and if they choose, their physicians. Helix is one of the largest clinical sequencing labs in the U.S.
A: You will receive a DNA test kit free of charge. Helix will then sequence your DNA, store the resulting genetic information, and give you access to their store of DNA-based products. You will receive the National Geographic Geno 2.0 product free of charge.
In addition, you may benefit indirectly from participating because of the results of this project. Those results may shed light on the health of our community as a whole, and they may help us make better health decisions in the future.
A: To thank you for participating in the project, Helix will email you a promotional code to obtain your ancestral information through the Geno 2.0 National Geographic app. The promotional code will allow you to receive these results at no cost to you. You can view details about this product on Helix’s website. Once you receive that code, please follow the link to National Geographic and create an account as well as consent for Helix to release the genetic information from your report needed for National Geographic to generate the ancestry report.
At a later date, our team will send out a survey to participants who have agreed to be contacted in the consent document for the trial. When the survey is completed, participants will receive an additional promotional code for an additional report through the Helix store.
If you agreed on the consent form to be contacted, you may receive a report about specific genetic risks that were identified in your DNA. Furthermore, the Healthy Nevada Project will periodically release reports related to specific health concerns to those who gave their consent if a report becomes available.
A: Helix conducts its own research, and you will have the option to opt into this research either when you register your DNA kit or at any point afterwards. Please note that Helix’s research consent document is NOT related to the Healthy Nevada Project, and the decision to participate is entirely up to you.
DRI and Renown will send you additional questionnaires in the future to get feedback from all participants. This will strengthen the Healthy Nevada Project and help us determine the relationships between genetics, certain health conditions, and the environment. Participation in these questionnaires is considered part of the Healthy Nevada Project, and is greatly valued and appreciated.
A: Everyone can sign up, but not everyone will be selected. Our final study participation numbers will match the population demographics of northern Nevada and Renown’s patient population. This means study participants will be selected based on specific demographic variables – male/female, age group, ethnicity, and residence in a rural or urban area of northern Nevada.
A: Currently the Healthy Nevada Project is not enrolling children under the age of 18. Please check back in the future for updates on how children can participate.
A: Yes, of course!
A: Yes! Please email us at RenownIHI@renown.orgto request an appointment since you have already used the Helix platform. We will get you scheduled for a time to come on site and consent to participate in the trial. To secure an appointment, please include your first and last name, date of birth, and preferred email address.
A: At this step in the registration process, you can stop here and close the page or logout. You will receive your kit when you come on site to test and we will help you through the process of linking the kit to your account at that time.
A: We ask that you don’t eat or drink for at least 30 minutes prior to testing. This includes water, chewing gum, smoking, etc.
In addition, each participant will need to have their own valid and unique email.
A: No, a simple saliva sample is all that’s needed.
A: On average, the testing appointment takes about 20 minutes. Please keep in mind that you can’t eat or drink (even water) for 30 minutes prior to spitting.
A: You won’t receive results directly from the Healthy Nevada Project. You will get results from the product you get (free of charge) from the Helix Store. While it could take up to a few months, we generally expect Helix to finish sequencing your DNA in 6–10 weeks. You will be notified via email when your sample has successfully reached the lab, and you will receive another email with instructions on how to obtain your product from the Helix Store.
If you need any assistance regarding these emails, you can contact Helix’s customer care team at 844-211-2070 or via email at: firstname.lastname@example.org.
A: No. Participants are free to purchase other apps in the Helix App Store but are not required to do so.
A: Once your DNA has been sequenced, you may visit the Helix store for apps that might be interesting to you.
Note: All third-party transactions made through the Helix store are independent and not affiliated with the Healthy Nevada Project.
A: Your doctor or insurance company may be able to refer you to a genetic counselor. Alternatively, the following website can be used to locate a genetic counselor in your area: http://aboutgeneticcounselors.com/
A: The results you receive through the Helix platform come from one of their product partners (for example, the Ancestry Geno 2.0 report comes from National Geographic). If you have questions about those results, please contact that partner directly. If you consented and have questions regarding specific health related results that you received from Healthy Nevada Project, please contact us at 775-982-6914 or RenownIHI@renown.org. You may also choose to contact a genetic counselor to assist you with interpretation of your results. The following link is available for this purpose:
A: To help us protect your privacy, we have obtained a Certificate of Confidentiality 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, the Principal Investigator will be able to re-identify you for the purposes of communicating this important information.
Federal and state laws are in place to protect your protected health information (PHI). Examples of this information are increased risk of developing serious diseases such as Cardiovascular Disease or Cancer.
A: The genetic information collected as part of the Healthy Nevada Project (HNP) is not part of the HNP participant’s Renown Health designated medical record set. 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 was 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: 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, check out ginahelp.org.