PORTLAND — Fitness coach LaTosha Wilson was having coffee with a student in 2020 when she learned about the Healthy Oregon Project, a research project to help inform participants about whether they are at a higher risk for developing cancer — and help promote scientific research.
Wilson said she didn't hesitate to take the opportunity to get tested. Her mother was 58 when she died of cancer in 2014. Months after getting tested, Wilson learned she has an elevated risk of developing breast cancer.
“At first you hear the result and think, ‘Oh, my gosh.’ But that didn’t mean that I have a death sentence,” said Wilson of Hillsboro.
She said knowing the risk factors can be 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,” she said.
The Healthy Oregon Project, also referred to as HOP, is focused on better understanding the causes and ways to prevent cancer. And they're looking for more people to participate in the free screening, particularly communities of color.
Participants voluntarily complete a variety of health surveys and submit a sample of saliva for inherited risk genetic screening.
The screening utilizes population-based genetic testing for 32 cancer risk genes. Though not as extensive as testing one might receive from a genetic oncologist, the screening provides a baseline of care that would typically be limited to those with adequate insurance coverage and whose family health history deems it medically necessary.
The 32 genes are associated with inherited cancer syndromes, which account for 5-10% of all cancers. Examples include hereditary breast and ovarian cancer syndrome (HBOC) and Lynch syndrome, which increases the risk for colorectal cancers.
About 1% of Americans have HBOC or Lynch, but fewer than 30% of these individuals know they have it, according to an estimate from a 2019 study.
While other universities have conducted population-based cancer research, HOP uses an app to recruit and engage with participants, which is unique to the Healthy Oregon Project.
Individuals interested in joining the study and receiving free genetic screening and counseling simply download the app, which takes them through sign-up, survey completion, and the request for the free HOP Genetic Cancer Risk Screening Kit.
More than 30,000 individuals already have enrolled in the study, representing about 1% of the Oregon population.
HOP hopes to make the genetic screening process, including the test kit and app, also available in Spanish.
How The HOP Program Works
HOP genetic screening is a five-step process that may 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 pre-paid return label with shipping and mailing instructions.
Completion of the health surveys is optional but can help HOP scientists get a better understanding of the scope of an individual’s potential health risks. Some of the survey's results include health recommendations.
Once received, the saliva sample is entered into a secure HIPAA-compliant database by the HOP team and given an anonymous identifier to protect the identity of the participant.
Oregon Health & Sciences University's Integrated Genomics Lab (IGL Lab), directed by Chris Harrington, Ph.D., first receives the sample.
The IGL Lab extracts and quantifies DNA from the sample, creating a DNA sample database as they do so.
The scientists can process 96 samples in approximately two and a half days because of the help of a few lab robots, one for DNA extraction and another for making sure all samples have the same concentration of DNA.
After leaving the IGL Lab, the samples travel to the Knight Diagnostics Lab (KDL Lab) where the DNA is sequenced and screened for the 32 cancer risk gene variants.
The KDL Lab team analyzes the data for the variants, and if the variants are identified, they are confirmed by 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. Participants are not contacted again by the HOP team.
If positive, participants are first contacted by HOP’s genetic counselor, Kelly Hamman, who explains the results and discusses measures for decreasing the risk of cancer development. After this initial consultation, a printed copy of the results is sent to participants and is available to them in the HOP app.
One month after the initial consultation, participants are contacted by Ryan Lutz, HOP’s Participant Navigator. Lutz helps participants find the services they may need, from low-cost insurance and primary care provider access to behavioral health care and community support resources.
“My main goal is reducing any barriers to accessing care that the participants may need,” Lutz said.
He checks in with participants again six months after they received their results, but is available at any time throughout 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 the social media platforms Facebook, Instagram and Twitter, which are run by HOP’s community outreach director, Vanessa Serrato.
Serrato said future outreach efforts will focus on diversifying participants.
“We recognize that there are substantial disparities in health and, specifically, cancer across our state,” Jackilen Shannon, Ph.D., associate director of Knight Community Outreach and Engagement, said. “Understanding and addressing the root causes of these disparities requires that our studies include a diverse participant population so we can focus our resources where they may have the greatest impact.”
Participant data is never sold, but it can be shared with research institutions that meet OHSU’s ethics committee requirements. This data is intended for the advancement of scientific research only.
Insurers may be able to access an individual's OHSU medical records, but under the federal genetic privacy law, GINA (Genetic Information Nondiscrimination Act), they may not discriminate based on positive results.
The Creation Of HOP
This project began 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, began brainstorming an idea to engage Oregonians with cancer prevention and early detection research.
Spellman explained how inherited cancer syndromes significantly increase the risk of developing and dying from cancer.
“Cancer has a major inherited component. (With inherited cancer syndromes,) the likelihood of developing cancer is significantly higher for most cancers,” he said.
There are a lot of additional known environmental and behavioral factors that can increase one’s 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, partnered with his colleague Shannon, the co-director of HOP and a professor at the OHSU School of Public Health.
They knew they had to find a way to perform the testing inexpensively and broadly to make the preventative screening more accessible.
HOP was funded through the National Cancer Institute Moonshot Initiative and receives continued internal funding through the Knight Cancer Institute. HOP also receives support from other partners such as the American Cancer Society, Oregon Health Authority, Nike and other academic institutions.
“HOP was an opportunity to think creatively about how to create a cohort of individuals who not only share information with us but with whom we share information back,” Shannon said. “We all gain from this project and have the ability to address a huge array of research questions that aren’t addressable with small datasets.”
'Take Care Of Yourself'
Wilson is thankful that she made the decision to enroll with HOP. She said she feels she is making even better choices after receiving her positive results.
After her mother died, Wilson said she became determined to honor her mom by making sure she did everything she could to promote her own health as well as the health of others.
She said taking the HOP test was her first step in self-care.
“You know and you are empowered to take care of yourself,” she said.
Wilson said HOP counseling and outreach connected her with resources she didn’t know about, and she is able to get an MRI every six months in addition to her yearly mammogram through her updated insurance coverage.
She encourages others to live a life of self-care and care for their community.
“Put your oxygen mask on first,” she said. “If you are not healthy, you can’t help anyone else.”
Sydney Wyatt covers healthcare inequities in the Mid-Willamette Valley for the Statesman Journal. You can contact her [email protected], by phone (503) 399-6613, or on Twitter@sydney_elise44.
The Statesman Journal’s coverage of healthcare inequities is funded in part by theM.J. Murdock Charitable Trust, which seeks to strengthen the cultural, social, educational, and spiritual base of the Pacific Northwest through capacity-building investments in the nonprofit sector.