Genetic Testing FAQ

Nevada residents over the age of 18 years with an active Renown MyChart account who do not have a history of a stem cell or bone marrow transplant from a donor. Renown patients who reside just outside of Nevada but seek care at Renown Health are also eligible to participate.

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.

The Healthy Nevada Project is powered by Renown Health. Renown Health is a locally governed and owned, not-for-profit integrated healthcare network serving Nevada, Lake Tahoe, and northeast California.

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.

The first phase of Renown’s Healthy Nevada Project was launched in September 2016 with 10,000 Nevadans joining the study. 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 study began to include Las Vegas and southern Nevada.

Renown’s Healthy Nevada Project will continue indefinitely with an expectation of enrolling over 250,000 participants into the study.

We learned from the pilot study that we needed to integrate Renown’s Healthy Nevada Project into clinical care. To do this, we needed a vendor that could provide clinically actionable results to enrolled patients and their physicians. Renown’s clinical research teams will have greater depth and quality of DNA data thanks to Helix’s Next Generation Sequencing (NGS) technology and one of the world’s largest CAP- and CLIA accredited exome sequencing labs.

On average, visiting the enrollment website and reviewing the consent form takes about 15 to 20 minutes. You may visit the enrollment website on your own and review and sign the consent form. If you prefer you may schedule a virtual appointment with a Genomic Representative who will answer any questions you might have.

Once you visit a laboratory for your blood draw, the visit will take about 15 to 20 minutes.

If you are providing a blood sample, fasting is not required, but please do not schedule your visit within 30 days of receiving a blood transfusion or blood products. In addition, if you are scheduling your blood sample with other labs please follow whatever guidelines they provide for those tests.

Step 1: Sample Processing

• Your sample is sent to Helix’s lab for testing.
• Within a few days, you’ll get an email from Helix to set up your account.
• For convenience, you can also log in using MyChart.

Step 2: Sequencing & Storage

• Helix sequences and securely stores your genetic information.
• Results are available in your Helix account and also added to your medical record/MyChart.

Step 3: Results You’ll Receive

• You’ll see two types of results in your Helix account under the Results tab:
  1. Helix Ancestry & Helix Traits – ancestry and wellness insights (arrive first).
  2. Helix Health – clinical results for:
     • Familial Hypercholesterolemia
     • Hereditary Breast & Ovarian Cancer Syndrome
     • Lynch Syndrome
• Results may take up to 12 weeks, and you’ll get an email notification once they’re ready.

Step 4: If a Genetic Mutation Is Found

• If any mutation is detected, Helix will call you directly.
• You’ll receive no-cost genetic counseling with a licensed counselor and additional resources.
• If no actionable findings are found, you won’t be contacted.

Step 5: Ongoing Research Participation

• From time to time, you may receive voluntary survey invitations by email.
• Some surveys may include extra incentives, which will be explained at the time.

Your results are only one piece of your health picture. It’s important to know:

• Test results do not change a previous diagnosis or your family risk.
• Cancer and heart disease may also be caused by:
  • Lifestyle
  • Family history
  • Environment
  • Personal medical history
  • Other genetic conditions
• The Healthy Nevada Project test:
  • Does not evaluate all genes linked to cancer and heart disease
  • May not identify all DNA variants in the genes tested

Next steps you may want to consider:

• Speak with a genetic counselor or your healthcare provider about your results.
• Ask if you need additional or different screening.
• If you have a negative test result but also have a clinical diagnosis, a diagnostic genetics consultation may help determine if more testing is appropriate.

About genetic counselors:
A genetic counselor is specially trained to:

• Help you understand how your genetic results may affect your health and family risk
• Discuss medical recommendations with you
• Guide you in sharing important information with relatives
• Provide support outside of the Healthy Nevada Project

A negative result is reassuring, but it is not the full picture.

Why a negative result doesn’t mean “no risk”:

• Cancer and heart disease can also be caused by:
  • Lifestyle
  • Family history
  • Environment
  • Personal medical history
  • Other genetic conditions
• Routine screening for cancer and coronary artery disease is still important.
• Even without genetic risk factors:
  • 1 in 8 biological women will develop breast cancer
  • 1 in 25 people will develop colorectal cancer
  • Nearly 1 in 4 people will develop coronary artery disease

Important reminders:

• If you already have a diagnosis of Hereditary Breast and Ovarian Cancer Syndrome, Lynch Syndrome, or Familial Hypercholesterolemia, do not disregard those results — this study does not overturn them.
• Science is evolving. Not all genetic variants linked to cancer or cardiovascular disease are currently identified or screened for.
• Share any personal or family history of cancer or heart disease with your medical provider. They can help determine if additional genetic testing is appropriate.

Looking ahead:

• The American College of Medical Genetics lists many other conditions that can be managed through genetic screening.
• Renown’s Healthy Nevada Project currently reports on the top three:
  • Hereditary Breast and Ovarian Cancer Syndrome
  • Lynch Syndrome
  • Familial Hypercholesterolemia
• With the advancement of genomic medicine, more hereditary risks may be reported in the future.

Unless explicitly stated differently in the Informed Consent for Renown’s 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.

How Your Privacy Is Protected

• Renown has obtained a Certificate of Confidentiality (CoC) from the National Institutes of Health (NIH).
  • This allows researchers to legally refuse to disclose your information in federal, state, or local proceedings — even if subpoenaed.
  • Researchers will use this Certificate to resist any demands for information that could identify you.
• For research purposes, all information is de-identified:
  • Your Helix account and any products you purchase in the Helix Store are not accessible to Renown researchers.
  • Helix only shares the parts of your genome that are relevant to this study.
• If findings are considered important for your health, and you have given consent:
  • The Principal Investigator may re-identify you in order to share information through trained medical staff.
  • Examples include increased risk of serious conditions such as cardiovascular disease or cancer.
• Federal and state laws also protect your protected health information (PHI).

Yes, but you will be under no obligation to participate in future research studies and may opt-out of being contacted regardingadditional research studies at any time by contacting the study team directly. Study participants are often the first to be offered new research opportunities that may benefit them.

For example, Renown may open additional clinical trials in specific disease areas, such as our M/NASH Liver Disease Study, to participants interested in taking part.

No, it will not. Renown’s 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.

Your Rights Under GINA

The Genetic Information Nondiscrimination Act of 2008 (GINA) is a federal law that protects you from genetic discrimination in health insurance and employment.

What GINA protects:

• Health insurers cannot request, require, or use genetic information to:
  • Decide if you are eligible for coverage
  • Set your premium or contribution amounts
  • Change your coverage terms
• Employers cannot use genetic information when making decisions about hiring, firing, promotions, or job assignments.
• With these protections, you can feel comfortable sharing family health history with your doctor or loved ones.

What GINA does not cover:

• Life insurance
• Disability insurance
• Long-term care insurance

🔗 To learn more about your protections, visit ginahelp.org.

How Your Genetic Information Is Stored and Protected

• Genetic information collected through Renown’s Healthy Nevada Project® is stored as de-identified data.
• Only your interpreted genetic results are included in your Renown medical record.

What this means for you:

• Even if law enforcement subpoenaed your Renown medical record, they would not receive individually identifiable genetic information.
• If an attempt were made to obtain genetic information directly from the Healthy Nevada Project:
  • The research team would legally oppose the request.
  • You would receive legal notice and an opportunity to object.

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

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. This has never occurred in relation to Renown’s Healthy Nevada Project.

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.