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PORTLAND — Fitness trainer LaTosha Wilson was having coffee with a student in 2020 when she heard about the Healthy Oregon Projecta research project to help inform participants about whether they are at increased risk of developing cancer and help promote scientific research.
Wilson said he didn’t hesitate to jump at the chance to get tested. Her mother was 58 years old when she died of cancer in 2014. Months after getting tested, Wilson discovered that she has an elevated risk of developing breast cancer.
“At first you hear the result and think, ‘Oh my God.’ But that doesn’t mean I have a death sentence,” Wilson said.
He said knowing your risk factors can be a motivation to take control of your health.
“It became my mission to make sure people knew about all the resources that were available to them,” he said.
The Healthy Oregon Project, also known as HOP, focuses on better understanding the causes and ways to prevent cancer.. And they are looking to get more people to participate in the free screening, particularly communities of color.
Participants voluntarily complete a variety of health surveys and submit a saliva sample for genetic evaluation of hereditary risk.
The screening uses population-based genetic testing for 32 cancer risk genes. Although not as extensive as the tests one might receive from a genetic oncologist, the evaluation provides a foundation of care that would normally be limited to those with adequate insurance coverage and whose family health history deems it medically necessary.
All 32 genes are associated with inherited cancer syndromes, accounting for 5% to 10% of all cancers. Examples include hereditary breast and ovarian cancer (HBOC) syndrome and Lynch syndrome, which increases the risk of colorectal cancer.
About 1% of Americans have HBOC or Lynch, but less than 30% of these people know they have it, according to a 2019 study estimate.
While other universities have conducted population-based cancer research, HOP uses an app to recruit and engage with participants that is unique to the Healthy Oregon Project.
People interested in joining the study and receiving free genetic counseling and testing simply download the app, which leads them to register, complete the survey and request the free trial. HOP Genetic Cancer Risk Screening Kit.
More than 30,000 people have already enrolled in the study, which represents about 1% of the population of Oregon.
HOP hopes that the genetic screening process, including the test kit and app, will also be available in Spanish.
How the HOP program works
The HOP genetic evaluation is a five-step process that can take four to six months.
After enrollment, individuals should receive their HOP kit within two weeks. The kit contains instructions for providing a saliva sample, as well as a prepaid return label with shipping and shipping instructions.
Completing the health surveys is optional, but can help HOP scientists better understand the scope of potential health risks to an individual. Some of the survey results include health recommendations.
Once received, the HOP team enters the saliva sample into a secure HIIPA-compliant database and is assigned an anonymous identifier to protect the participant’s identity.
The Integrated Genomics Laboratory at Oregon Health & Science University (IGL Lab), led by Chris Harrington, Ph.D., receives the sample first.
The IGL lab extracts and quantifies the DNA from the sample, building a database of DNA samples as they do so.
Scientists can process 96 samples in about two and a half days with the help of a few lab robots, one for DNA extraction and one to make sure all samples have the same DNA concentration.
After leaving the IGL lab, the samples travel to the Knight Diagnostics lab (KDL lab), where the DNA is sequenced and screened for all 32 cancer risk gene variants.
The KDL Lab team analyzes the variant data, and if identified, they are confirmed through a two-step process. First, they use an additional method of DNA sequencing called Sanger sequencing, and then a genetic analyst reviews and confirms the results.
If the results are negative, they are entered into the “Results” tab in the HOP app. The HOP team does not contact participants again.
If positive, participants are first contacted by HOP’s genetic counselor, Kelly Hamman, who explains the results and discusses steps to lower the risk of developing cancer. After this initial consultation, a hard copy of the results is sent to the participants and is available to them in the HOP app.
One month after the initial consultation, participants are contacted by Ryan Lutz, HOP Resource Connector. Lutz helps participants find the services they may need, from low-cost insurance and access to a primary care provider to behavioral health care and community support resources.
“My main goal is to reduce barriers to accessing care that participants may need,” Lutz said.
He contacts participants again six months after they receive their results, but is available at any time during their health journey. Translation services are available for all health consultations and resource connection conversations.
HOP recruits participants primarily through the use of accounts on social media platforms. Facebook, Instagram Y Twitterled by HOP Community Outreach Director Vanessa Serrato.
Serrato said that future outreach efforts will focus on diversifying the participants.
“We recognize that substantial disparities in health, and specifically cancer, exist throughout our state,” said Jackilen Shannon, Ph.D., associate director of Outreach and Development. “Understanding and addressing the root causes of these disparities requires that our studies include a diverse population of participants so that we can focus our resources where they can have the greatest impact.”
Participant data is never sold, but may be shared with research institutions that meet the requirements of the OHSU ethics committee. These data are intended solely for the advancement of scientific research.
Insurers can access a person’s OHSU medical records, but under the federal genetic privacy law, Gina (Law of Non-Discrimination for Genetic Information), they cannot discriminate based on positive results.
The creation of H.O.P.
This project started in 2018 at the OHSU Knight Cancer Institute when Paul Spellman, Ph.D., co-director of HOP and professor in the Department of Molecular and Medical Genetics at the OHSU School of Medicine, started thinking of an idea to engage Oregonians in early detection and prevention research of cancer.
Spellman explained how hereditary cancer syndromes significantly increase the risk of developing and dying from cancer.
“Cancer has an important inherited component. (With inherited cancer syndromes), the chance of developing cancer is significantly higher for most cancers,” she said.
There are many additional environmental and behavioral factors known to increase the risk of developing cancer, so HOP works to understand how these factors and a person’s genetics affect the risk of hereditary cancer and other health conditions.
Spellman, who leads other efforts at the Knight Cancer Institute, teamed up with her colleague Shannon, co-director of HOP and a professor in the OHSU School of Public Health.
They knew they had to find a way to test cheaply and widely to make preventive screening more accessible.
HOP was funded through the National Cancer Institute Moonshot Initiative and receives ongoing internal funding through the Knight Cancer Institute. HOP also receives support from other partners, including the American Cancer Society, the Oregon Health Authority, Nike, and other academic institutions.
“HOP was an opportunity to think creatively about how to create a cohort of people who not only share information with us, but who we share information with,” said Shannon. “We all benefit from this project and we have the ability to address a wide variety of research questions that cannot be addressed with small data sets.”
‘Take care of yourself’
Wilson is grateful that she made the decision to enroll in HOP. She said that she feels that she is making better decisions after receiving positive results from her.
After her mother’s death, Wilson said she made up her mind to honor her mother by making sure she did everything she could to promote her own health and the health of others.
She said getting the HOP test was her first step in self-care.
“You know and are empowered to take care of yourself,” he said.
Wilson said HOP’s counseling and outreach connected her to resources she was unaware of and that she can get an MRI every six months in addition to her annual mammogram through her up-to-date insurance coverage.
She encourages others to live a life of self-care and care for their community.
“Put on the oxygen mask first,” he said. “If you’re not healthy, you can’t help anyone else.”
Sydney Wyatt covers health care disparities in the Mid-Willamette Valley for the Statesman Journal. You can contact her at[email protected]by phone (503) 399-6613, or on Twitter@sydney_elise44The Statesman Journal’s coverage of health care inequities is funded in part by theMJ Murdock Charitable Trustwhich seeks to strengthen the cultural, social, educational, and spiritual foundation of the Pacific Northwest through investments in capacity building in the nonprofit sector.