FAQ

Frequently Asked Questions

Q: Can I participate in the Healthy Nevada Study if my DNA has been previously sequenced by Helix?

A: Yes!! Please email us at RenownIHI@renown.orgrequesting an appointment since you have already used the Helix platform and we will get you scheduled for a time to come on site and consent to participating in the trial. To secure an appointment, please include your first and last name, date of birth, and preferred email address in the email.

Q: How do I create a Helix account?

A: Please click here to create a Helix account prior to your appointment, and have your login ID and password memorized or written down for your visit.

Q: Do I need to purchase more Apps from the Helix Store?

A:No. Participants are free to purchase other apps in the Helix App Store but are not required as specifically stated in the consent form.

The genetics panel that the Renown Institute for Health Innovation will receive from Helix will help us inform participants of risks for heart disease and cancer. These risks will be communicated to participants who have consented to have their results returned to them.

The goal of the project is to combine genetic data with clinical, population and environmental data to analyze and model public health in the Silver State, from the most common diseases to the health impacts of the state’s air quality.

To do so, we need support from participants like you.

For participating you will receive free ancestry information from National Geographic’s Geno 2.0 app upon enrollment. In addition, each participant will be offered the opportunity to complete a survey about your health history and health behavior. Successful completion of this Healthy Nevada Project follow-up survey would grant you access to a code to redeem an additional health and wellness app.

Q: What if I want to learn more about my DNA?

A: Once your DNA has been sequenced you may check out the Helix store for Apps which might be of additional personal interest. Note: All third-party transactions made through the Helix store are independent and not affiliated with the Healthy Nevada Project.

Q: I registered for a Helix account and I am being asked to enter a kit ID. What do I do this step?

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.

Q: If I participated in the 23andme project, can I participate again since there was the switch to Helix?

A: Yes, of course!

Q: How is my data used?

A: A complete outline of how your data is used in this study is in our Privacy Policy.

Q: What steps have you taken to ensure that my information is kept private?

A: The following information is in each consent document: “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 PI 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.

Q: When will I receive my results?

A: You won’t receive results directly from the research. However, 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.

Q: Will I be opting into future research studies by participating in this project?

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 that we’ll use 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.

Q: What if I learn of something upsetting through the results I get from a product from the Helix Store?

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/

Q: How do I interpret my results?

A: Your results come from one of the products in the Helix Store. These products are made by one of several organizations. For more information about your results,  you should contact the organization that gives you your results. You may also want to talk with a genetic counselor.

Q: What benefit will I receive from participating?

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 also receive one of those products 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.

Q: How will I find out about results from this project?

A: Results from the Healthy Nevada Project will be published in peer-reviewed science publications and every effort will be made to ensure these publications are summarized in lay terms and the publications are available as open access papers.

Q: Why are we doing this project? What will we learn from it?

A: This is a population health study. We are trying to get the funding and participation of as large a fraction of Nevadans as possible.  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 health trajectory and use this information to help you make better decisions about your health.

Q: Are children under the age of 18 allowed to enroll in the study?

A: For the first portion of Phase Two of the Healthy Nevada Project we are not enrolling children under the age of 18. Please check back in the future for updates on how children can participate.

Q: Will my insurance company use my genetic results against me (i.e. will they deny future claims because of my results)?

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 makes it against the law for 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.

Q: Can the police ask Renown Health for my DNA sequence?

A: The genetic information collected as part of the Healthy Nevada Project (HNP) is not considered 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 any 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.

Q: How long will my information be kept?

A: You may withdraw from the study at any time by notifying the Principal Investigator of the study. The result of withdrawing from the study is that you will no longer receive any emails and have no obligation to answer those emails; your genetic results will be completely de-identified and we will have no way of contacting you if medical knowledge changes. However, your de-identified genetic and health information will continue to be a part of the entire study genetic and health information database and will continue to be used by the researchers and may be used for future research. Since the data is de-identified, the researchers will have no way to tie the data they are reviewing to you or any other individual study participant. You can read more at the Healthy Nevada Project’s Informed Consent page.

Helix will continue to store your genetic information for as long as you maintain a Helix account. For more information, you can read their Terms of Service, Privacy Policy, or Platform Consent.

Q: Why the switch to 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 US.

Q: Do I need to purchase more Apps from the Helix Store?

A: No. Participants are free to purchase other apps in the Helix App Store but are not required as
specifically stated in the consent form.

The genetics panel that the Renown Institute for Health Innovation will receive from Helix will help us
inform participants of risks for heart disease and cancer. These risks will be communicated to
participants who have consented to have their results returned to them.

The goal of the project is to combine genetic data with clinical, population and environmental data to
analyze and model public health in the Silver State, from the most common diseases to the health
impacts of the state’s air quality.

To do so, we need support from participants like you.

For participating you will receive free ancestry information from National Geographic's Geno 2.0 app
upon enrollment. In addition, each participant will be offered the opportunity to complete a survey
about your health history and health behavior. Successful completion of this Healthy Nevada Project
follow-up survey would grant you access to a code to redeem an additional health and wellness app.

Q: What if I want to learn more about my DNA?

A: Once your DNA has been sequenced you may check out the Helix store for Apps which might be of
additional personal interest. Note: All third-party transactions made through the Helix store are
independent and not affiliated with the Healthy Nevada Project.