FAQ

A: Your sample will be sent to Helix’s lab for processing. You will receive an emai from Helix within days of your screening to access your account. Participants can use their MyChart login for ease of access. Helix will sequence and store your genetic information from your sample and return genetic results on your Helix account, populated to your medical record and viewable through MyChart. You will be provided with two results products on your Helix account under the results tab. Participants typically receive ancestry and wellness insights through the“Helix Ancestry” and “Helix Traits” product first and then clinical results for Familial Hypercholesterolemia, Hereditary Breast and Ovarian Cancer Syndrome, and Lynch Syndrome in the “Helix Health” product shortly thereafter.  Results can take up to 12 weeks to be returned and Helix will notify you by email when your results are available to review on your Helix account.

Although rare, if a genetic mutation is discovered for any of the conditions tested, you will be contacted by phone to discuss your results and be provided with additional resources about your findings, such as no cost genetic counseling with a licensed genetic counselor. You will not be contacted if there are no actionable findings.

Throughout the duration of the study, you may be periodically contacted by email to complete voluntary surveys to help improve our research. Some surveys may include additional incentives for completion that will be disclosed at the time of distribution.

A:. You will receive two kinds of results if you decide to participate. Participants receive non-clinical genetic results through the “Helix Ancestry” and “Helix Traits” results product. Through these results products, you will be able to learn and explore your genetic insights related to your regional ancestry and how your DNA can influence your body’s response to the foods you eat. Please note: this results product does not contain health results.

Clinical genetic results for Familial Hypercholesterolemia, Hereditary Breast and Ovarian Cancer Syndrome, and Lynch Syndrome are provided through the “Helix Health” results product. Participants will be notified by email when their results are available to be viewed directly on their Helix account. Results will be accessible for as long as the Helix account is active, and participants can download a clinical report for the genetic conditions being tested. Results will also be populated to a patient’s Renown medical record when testing is complete and viewable on MyChart.

Familial Hypercholesterolemia (FH): Increased risk for early heart disease and high cholesterol

Breast & Ovarian Cancer Syndrome (BRCA 1&2 genes): Increased risk for Breast, Ovarian, Prostate, and Pancreatic cancers

Lynch Syndrome: Increased risk for colon and endometrial cancers

A: These three conditions are CDC (Centers for Disease Control) Tier 1 clinically actionable conditions. This means that actions can be taken to treat, prevent, delay or reduce symptoms of these health conditions. Therefore, if you learn that you or your family member have an increased risk of developing any of these conditions, you and your primary care provider can follow an action plan that may help improve health outcomes.

The Healthy Nevada Project may expand to report on additional hereditary risks in the future. You will not receive additional results without your consent. We will let you know if other results may be offered in the future.

A: Sequencing and return of results may take up to 12 weeks once your sample has been received at the Helix lab. Helix will notify you by email with updates regarding the status of your sample and when your results are ready to be viewed on your Helix account. Your genetic results will also be populated to your medical record and viewable through MyChart.

A: Only about 1% of the population will have the genetic variants that are understood to cause an increased risk for the conditions we are currently screening for. That means about 99% of the study participants will not have a pathogenic/likely pathogenic variant for the 3 conditions we are currently screening for. If no DNA variants are found for the conditions being tested, this is reassuring, but there are other causes of cancer and heart disease that were not evaluated as part of this test. Lifestyle, family history, environment, personal medical history and other genetic conditions all contribute to your overall health and personal risk for disease. Therefore, continued routine screening for cancer and coronary artery disease is important. Please talk with your doctor about ongoing recommended screening for cancer and heart disease. You may still be contacted by your provider for additional follow-up.

A: Not completely – Your negative result is reassuring, but there are other causes of cancer and heart disease that were not evaluated as part of this test. Lifestyle, family history, environment, personal medical history and other genetic conditions all contribute to your overall health and personal risk for disease. Therefore, continued routine screening for cancer and coronary artery disease is important. Even without an identifiable genetic risk factor, one in eight biological women will develop breast cancer in their lifetime, and one in twenty-five people will develop colorectal cancer in their lifetime. Additionally, nearly one in four people will develop coronary artery disease in their lifetime. Please talk with your doctor about ongoing recommended screening for cancer and heart disease. If you have previously been diagnosed with Hereditary Breast and Ovarian Cancer syndrome, Lynch Syndrome, or Familial Hypercholesterolemia, do not disregard those test results. The negative screening test results from this study do NOT mean your previous results were incorrect. Science is constantly evolving, and we know researchers have not identified all possible genetic variants that could be associated with these conditions. There are other genes known to increase the risk for cancer or cardiovascular disease development that we are not screening for yet. Therefore, if you have a personal or family history of cancer, cardiovascular disease, or a cardiovascular event, be sure to share this information with your medical provider. Your doctor can help you determine if further genetic testing is appropriate.

The American College of Medical Genetics provides a list of other genetic conditions that can be diagnosed and managed through genetic screening, Healthy Nevada Project is currently reporting on the top 3 conditions: Hereditary Breast and Ovarian Cancer Syndrome, Lynch Syndrome, and Familial Hypercholesterolemia. The Healthy Nevada Project will continue to report on more hereditary risks in the near future. With the advancement of genomic medicine, It is possible we may offer the return of additional results in the future.

A: The American College of Medical Genetics provides a list of other genetic conditions that can be diagnosed and managed through genetic screening. Healthy Nevada Project is currently reporting on the top 3 conditions: Hereditary Breast and Ovarian Cancer Syndrome, Lynch Syndrome, and Familial Hypercholesterolemia. It is possible we may offer the return of additional results in the future. Continue to check your emails regularly and if you have any concerns about your health, consult with your physician.

A: A result of “test not performed” means the sample that was provided did not meet the quality standards needed to complete the DNA sequencing at the Helix lab. Some examples of why this might happen include, but are not limited to, issues with processing the sample and extracting the DNA, issues with the sample being read in the sequencing machine, or issues with the sequencing data not being a high enough quality for interpretation. Every sample and its associated data is checked at multiple stages for quality, and a typical sample is given a “Test Not Performed” result only after it has failed multiple attempts.

Most of these issues may be resolved by collecting another sample and therefore we encourage any participant who receives a TNP result to provide another sample. If this issue occurs again, additional review of the issue will be completed in order to provide the best next steps about additional sample collection.

A: No. ​​The results of your ancestry and traits may be different from what you understand to be true about yourself. This does not mean the information provided to you about these results or your health results is inaccurate.

It is important to understand that trait and ancestry results are estimates based on DNA patterns rather than definitive information. These results give insights into a person’s genetic origins or predispositions. They do not guarantee the occurrence of specific ancestry or traits. While some traits are easy to predict based on genetic information, other traits are more complex and therefore more challenging to predict based on genetic data alone. Trait and ancestry results are different from Helix Health results. Helix Health screening looks for the presence or absence of specific genetic variants. Such variants have extensive evidence from the medical community linking them to risk for disease.

Why doesn’t my ancestry and/or trait result match my actual ancestry or trait?
Genetic variations linked to ancestry and traits occur throughout the genome. They are responsible for the natural genetic diversity among people. These genetic variants estimate the most likely ancestry or traits that a person will have. They are not definitive and do not guarantee the occurrence of specific ancestry or traits.

Sometimes, the ancestry and traits we express do not match what is expected based on DNA screening. There are a few reasons for this. First, Helix screening may not include all of the genetic variants linked to a specific trait or ancestry. Also, there may be interactions between genes that are not yet fully understood. Genetic traits are often influenced by multiple genes making it difficult to predict precise outcomes. Finally, genetic traits can be influenced by the environment or other factors. These factors can interact with your genetic makeup and contribute to differences between the traits you express and the traits expected based on your DNA screening.

A: If you have a personal or family history of a condition covered by this test, it is important to know the results of this test do not change a previous diagnosis or any family history risk you might have. This is because there are other causes of cancer and heart disease that were not evaluated as part of this test. For example, lifestyle, family history, environment, personal medical history, and other genetic conditions all contribute to your overall health and personal risk for disease. In addition, the screening test provided as part of the Healthy Nevada Project does not evaluate all genes associated with cancer and heart disease. Also, this test may not identify all DNA variants in the genes that were tested.

You may want to speak with a genetic counselor or your healthcare provider about the results of this test and whether additional or different genetic screening and general screening may be appropriate for you. In particular, participants with a negative genetic test and a clinical diagnosis of one of the conditions screened for by this test are recommended to consider a diagnostic genetics consultation to identify whether additional genetic screening or screening recommendations are indicated. A genetic counselor is a medical professional specifically trained to help you understand how your genetic information may impact your health and the health of your family members, discuss medical recommendations, and discuss how you can approach sharing any important information with others. Those communications would be separate from the Healthy Nevada Project.

A: Our partner, Helix, performs Exome+ sequencing on participant samples. This screening reads the DNA sequence of most genes (plus many other regions of the DNA). An individual’s DNA sequence is also called their genetic information. Through involvement in this study, participants will receive DNA test results for three medical conditions. These conditions include a genetic form of breast cancer, colon cancer and high cholesterol. There are no additional genetic test results planned for return through this research program at this time. This may change in the future if additional medical conditions become appropriate for general population screening. Participants will be notified of any updates before receiving new results.

Helix will store participants’ DNA sequence results for an unlimited time. Since participants’ genetic information has been sequenced and stored, it will be possible to use that information for future clinical genetic testing. Helix is actively working with Renown Health and other partnering healthcare institutions to offer opportunities for patients to learn more about their genetic information in the future. Such future clinical testing would only be performed at the request of an ordering healthcare provider and with the additional consent and payment by the patient.