FAQ
Frequently Asked Questions
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About the Healthy Oregon Project
The Healthy Oregon Project, or HOP, seeks to learn about the health of people in and around Oregon. Our goal is to understand the causes of cancer and other diseases in order to save lives. HOP offers surveys on health, wellness, and behavior and no-cost genetic screening using DNA from saliva samples. These samples and data are saved in a secure and privacy-protected repository of information that can be used to answer many different questions about health.
HOP aims to build a long-term research partnership with Oregonians in order to:
- Empower participants by providing personalized health information about their risk of cancer and other health conditions
- Create a robust repository of research data and samples to enable scientists to conduct research
- Build a cohort of individuals motivated to participate in health research, to serve as a resource for scientists looking for participants for future research studies
Our first research study is for the OHSU Knight Cancer Institute Cancer Early Detection Advanced Research Center (CEDAR) with funding from the National Cancer Institute (NCI)’s Beau Biden Cancer Moonshot. This study aims to understand the value of providing public-wide testing for high-risk cancer types (like hereditary breast and ovarian cancer [HBOC] or Lynch syndromes) and understand how people who are found to be high-risk follow cancer prevention guidelines. HOP is also supporting research on increasing enrollment of underrepresented groups in cancer research, to make health research representative of all Oregonians.
HOP is currently funded by the Knight Cancer Institute Center for Early Detection Advanced Research (CEDAR) and a Moonshot grant from the National Cancer Institute, National Institutes of Health. CEDAR is a research institute dedicated to identifying those at risk for cancer, detecting cancers early, and developing treatment that treat those early cancers. CEDAR is also supported by a collaborator network that is constantly growing.
Current collaborators include:
• University of Oregon Center for Science Communications Research
• Providence Cancer Institute
• Oregon State University
• Kaiser Permanente Center for Health Research
• Oregon Health Authority (OHA)
• Oregon Community Health Information Network (OCHIN)
To participate in HOP, you must be at least 18 years old. If you would like to participate in genetic screening, you must have an Oregon address to receive a HOP kit in the mail.
To join HOP, you will need access to a smartphone or computer:
Step 1: Download the Healthy Oregon Project app from the Google Play Store or Apple App Store or navigate to the ‘Login’ button at the top of the website page.
Step 2: Create a secure account with your email. Then, review and sign the electronic consent form.
Step 3: You can choose to complete any of the available surveys within the “Activities” menu.
Step 4: If you would like to submit a saliva sample for genetic screening, click on “Enroll: Genetic Screening” to get started. Follow the prompts to consent and request a HOP Kit.
No, the HOP app and website are connected, and therefore, your account can be accessed from either platform. Your login information is your email and the password you created when you initially enrolled in the study. Contact information can be updated in your account profile if needed.
HOP is a repository. A research repository collects, stores, and distributes human specimens (samples of blood, tissue, or body fluids like saliva) and/or data for use in future research studies. Storing lots of specimens and data together helps scientists answer research questions without needing to collect new specimens and data.
Your information, survey responses, and samples will be securely stored in a repository and may be shared with other researchers at OHSU and other institutions to answer important scientific questions. HOP only shares data with researchers that meet the OHSU ethics committee requirements.
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HOP Inherited Genetic Screening
Genetic screening is the process of identifying changes in DNA, also called mutations. Some genetic changes can confirm the presence of inherited genetic conditions or can indicate a higher risk of developing certain cancers and other health conditions.
About 5-10% of cancers are inherited, meaning they are caused by gene mutations that are passed down by family members. With genetic screening, it is possible to look at a person’s DNA and determine whether they have an inherited cancer risk. By learning about your inherited cancer risk, you can take action to reduce your risk or identify cancer at its earliest stages when it is most curable.
HOP screens for many genes associated with inherited cancer syndromes and one gene associated with increased cardiology risk. Inherited cancer syndromes are gene changes that are passed down by family members and increase cancer risk. Your sample will be screened for the genes listed in the HOP app at the time of consent.
HOP screens for the following diseases:
Hereditary Breast and Ovarian Cancer (HBOC): Families with HBOC have an increased risk for breast, ovarian, prostate, and pancreatic cancers. The genes associated with HBOC are BRCA1 and BRCA2.
Lynch Syndrome: Families with Lynch syndrome have an increased risk for colorectal, uterine, stomach, and ovarian cancers. The genes associated with Lynch syndrome are MLH1, MSH2, MSH6, and PMS2.
Familial Adenomatous Polyposis (FAP) and Attenuated FAP (AFAP): Families with FAP or AFAP have an increased risk for colorectal, small bowel, pancreatic, and thyroid cancers. The gene associated with FAP and AFAP is APC.
Familial Hypercholesterolemia (FH): Families with FH have an increased risk for elevated cholesterol that cannot be managed with diet. The gene associated with FH is LDLR.
HOP screens for other inherited cancer syndromes, but these are much less common.
We are currently screening for changes in the following genes:
Medical guidelines may change over time as our understanding of genetics evolves. We only report gene changes that have established medical guidelines that could impact your clinical care. The result you are given will be based on the current medical guidelines at the time your report is issued.
Learning you are at elevated risk for cancer or other diseases may be stressful. If you receive a positive result, you may be recommended preventive measures that may not be accessible to you depending on your insurance. If you need assistance identifying resources to access preventive care, HOP’s Participant Navigator may be able to help.
You are protected by a federal law, called the Genetic Information Nondiscrimination Act (GINA), which generally prevents health insurance companies, group health plans, and most employers from discriminating against you based on your genetic information. This law does not protect you against genetic discrimination by companies that sell life insurance, disability insurance, or long-term care insurance.
We have made efforts to protect your identity, but there is a small risk of loss of confidentiality. If the results of these studies of your genetic makeup were to be accidentally released, it might be possible that the information we will gather about you as part of this study could become available to an insurer, an employer, a relative, or someone else outside the study. Even though there are certain genetic discrimination and confidentiality protections in both Oregon law and federal law, there is still a small chance that you could be harmed if a release occurred.
If you choose to donate a saliva sample, your sample will arrive at an OHSU clinical laboratory where we will extract your DNA from the mouthwash, sequence the DNA, and analyze the results. All of these steps take time in order to provide accurate results.
Once your sample has been analyzed and you have received a result, any leftover DNA will be stored in a secure data and tissue bank, called a repository. Your sample and your genetic screening results may be used for future research studies.
We expect to provide results within 4 months.
Negative Results: Your results report will be uploaded to your secure HOP account. You will receive a notification when your results are available to view.
Positive Results: An OHSU genetic counselor will call you to explain your results and provide the recommended medical guidelines for your results, including options for preventive measures that could decrease your risk of developing cancer in the future. This genetic counseling consultation will be provided at no cost to you or your insurance. You will also be contacted one month after you speak with the genetic counselor by the HOP Participant Navigator who will provide resources as needed and assist with any questions you may have after learning your positive result.
All HOP results will be uploaded into your OHSU medical record. If you do not have an OHSU medical record, one will be created for you when you submit your saliva sample. This is a requirement for medical testing.
We will not share your results with your insurance provider, but they may be able to access your results in your medical record. A federal law called GINA (Genetic Information Nondiscrimination Act) prevents insurance companies from discriminating against you (for example, by raising your rates) based on your genetic screening results. However, disability insurance and life insurance companies are not covered by GINA. They may require copies of your medical records to approve a new policy.
No. Under GINA, the Genetic Information Nondiscrimination Act, health insurers cannot use genetic information, including results of predictive genetic tests, to make eligibility and coverage decisions. Predictive genetic test results cannot be considered a preexisting condition.
If you have a positive test result, the genetic counselor will review with you the associated cancer risks and management recommendations. Cancer risks and management recommendations vary by gene and mutation. Most management recommendations include more frequent cancer screening beginning at an earlier age than is recommended for the general population, and/or risk-reducing surgery options.
HOP’s genetic screening has a very low rate of false positives, meaning that we are confident that any positive results we release are accurate.
It is difficult to determine the number of positive results that we cannot identify, also called the false negative rate. The false negative rate depends on the type of mutation, but we estimate that it is around 10%. Even with a negative HOP result, people with a personal or family history suggestive of an inherited cancer syndrome or high cholesterol and heart disease should consider talking to their healthcare provider about additional genetic testing.
Yes, all HOP results will be entered into your OHSU medical record. If you do not have an OHSU medical record, one will be created for you when you submit your saliva sample. This is a requirement for the clinical lab to analyze your sample. This medical record will not affect your primary record if you are a patient at a different health system. The record created at OHSU for genetic screening will only be used to document your results and, if positive, your genetic counseling conversation. You can request to share the OHSU medical record with your primary health system, but the HOP team cannot do this on your behalf. The OHSU medical record can be accessed by healthcare providers within the OHSU health system.
No. Genetic screening is protected by GINA, the Genetic Information Nondiscrimination Act. Under GINA, predictive genetic test results cannot be considered a pre-existing condition.
Yes, participants with a personal cancer history are welcome to participate in HOP’s genetic screening. Because HOP analyzes many genes associated with inherited cancer syndromes, it is possible we could find a mutation associated with an increased risk for a type of cancer you have not had and are not screening for at this time. Additionally, if we find a mutation in you, your family members are at risk of having the same mutation.
No, you should keep your scheduled appointment. HOP’s genetic screening is designed for the general population and does not detect all inherited cancer risk. If you have a personal or family history suggestive of an inherited cancer syndrome, a consultation with a genetic counselor will allow individual assessment and pre-test genetic counseling, personalized genetic screening recommendation, results interpretation, and future management recommendations based on your personal and/or family history. Additionally, genetic screening ordered by a genetic counselor will likely return results in about a month and is intended for timely decision-making.
No, HOP’s genetic screening only tells you if you have inherited mutations in genes that could increase your risk of developing cancer in the future. Having a mutation does not mean you have or will develop cancer.
There is no cost to you or your insurance to participate in HOP’s genetic screening.
If you have a positive result, you will receive a genetic counseling consult with an OHSU genetic counselor and assistance with finding resources through the HOP Participant Navigator. These services are provided at no cost. You will be responsible for paying for any recommended preventive measures you choose to take to manage your risk.
Most insurance companies cover a percentage of the costs of recommended preventive measures to manage your risk. You should verify your insurance coverage before you undergo any recommended preventive measures.
If you do not have health insurance, the Participant Navigator can assist you with insurance enrollment or accessing financial assistance services available in most clinics and health systems.
No, we are unable to return raw data files currently. You will receive a summary report of your genetic screening results.
