PORTLAND — Fitness trainer 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 higher risk of developing cancer — and to help promote research.
Wilson said she didn’t hesitate to jump at the chance to get tested. Her mother was 58 when she died of cancer in 2014. Months after getting tested, Wilson learned she had an increased risk of developing breast cancer.
“You hear the score first and you think, ‘Oh my God.’ But that didn’t mean I had a death sentence,” Wilson said.
Knowing your risk factors can be motivation to take control of your health, she said.
“It became my mission to make sure people knew about all the resources available to them,” she said.
The Healthy Oregon Project, also called 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, especially communities of color.
Participants voluntarily complete various health surveys and submit a saliva sample for genetic screening for hereditary risk.
The screening uses population genetic testing for 32 cancer risk genes. Although not as extensive as the testing a person might receive from a genetic oncologist, screening provides a baseline of care that would normally be limited to those with adequate insurance coverage and whose family health history deems it medically necessary .
The 32 genes are associated with hereditary cancer syndromes that account for 5-10% of all cancers. Examples include hereditary breast and ovarian cancer syndrome (HBOC) and Lynch syndrome, which increases the risk of colorectal cancer.
About 1 percent of Americans have HBOC or Lynch, but fewer than 30 percent of those people know they have it, a 2019 study estimated.
While other universities have conducted population-based cancer research, HOP uses an application to recruit and engage participants that 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 guides them through registration, completing the survey, and requesting the free HOP Cancer Risk Genetic Screening Kit.
More than 30,000 people have already taken part in the survey, representing about 1% of Oregon’s population.
HOP hopes to make the genetic screening process, including the test kit and app, available in Spanish.
How the HOP program works
HOP genetic screening 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 mailing instructions.
Completing the health surveys is optional, but can help HOP scientists better understand the scope of an individual’s potential health risks. Some of the study results include health recommendations.
Once received, the saliva sample is entered into a secure HIIPA-compliant database by the HOP team and given an anonymous identifier to protect the participant’s identity.
Oregon Health & Sciences University’s Integrated Genomics Lab (IGL Lab), led by Dr. Chris Harrington, was the first to receive the sample.
The IGL laboratory extracts and quantifies DNA from the sample, creating a database of DNA samples as they do so.
The scientists were able to process 96 samples in roughly two and a half days thanks to the help of several lab robots, one to extract the DNA and another to make sure all the samples had 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 tested for 32 cancer risk gene variants.
The KDL Lab team analyzes the variant data and if variants are identified, they are validated through a two-step process. First, they use an additional DNA sequencing method called Sanger sequencing, and then a genetic analyst reviews and confirms the results.
If the results are negative, they are entered in the “Results” tab of the HOP application. The HOP team does not contact participants again.
If positive, participants are first contacted by HOP’s genetic counselor, Kelly Hamann, who explains the results and discusses measures to reduce the risk of developing cancer. After this initial consultation, a hard copy of the results is sent to participants and is available to them in the HOP app.
One month after the initial consultation, participants were contacted by HOP resource liaison Ryan Lutz. 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 primary goal is to reduce any barriers to accessing care that participants may need,” Lutz said.
He rechecks participants six months after they receive their results, but is available at any time during their health journey. Interpretation services are available for all health consultations and resource liaison calls.
HOP recruits participants primarily through the use of accounts on the social media platforms Facebook, Instagram and Twitterwhich are managed by HOP’s Director of Community Outreach, Vanessa Serrato.
Serrato said future outreach efforts will focus on diversifying the participants.
“We recognize that there are significant disparities in health care and, specifically, cancer in our state,” said Jackylon 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. This data is intended for the advancement of scientific research only.
Insurers may have access to an individual’s OHSU medical record, but under the federal genetic privacy law, GINA (Genetic Information Nondiscrimination Act), they cannot discriminate based on positive results.
The creation of HOP
This project began in 2018 at the OHSU Knight Cancer Institute when Paul Spelman, Ph.D., HOP co-director and professor in the Department of Molecular and Medical Genetics at the OHSU School of Medicine, began brainstorming an idea to engage Oregonians in research on prevention and early detection of cancer.
Spellman explained how hereditary cancer syndromes greatly increase the risk of developing and dying from cancer.
“Cancer has a major hereditary component. (With hereditary cancer syndromes) the likelihood of developing cancer is significantly higher for most types of cancer,” he said.
There are many additional known environmental and behavioral factors that can increase the risk of developing cancer, so HOP is working 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 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 do the testing cheaply and widely to make preventive screening more accessible.
HOP was funded through the National Cancer Institute’s Moonshot Initiative and receives ongoing internal funding through the Knight Cancer Institute. HOP also receives support from other partners such as 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 group of people who not only share information with us, but who we share information with,” Shannon said. “We all benefit from this project and have the ability to address a huge set of research questions that cannot be addressed with small data sets.”
Wilson is grateful she made the decision to enroll in HOP. She said she feels like she’s making even better choices after receiving her positive results.
After her mother passed away, Wilson said she was determined to honor her mother by making sure she did everything she could to maintain 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 are empowered to take care of yourself,” she said.
Wilson said HOP counseling and outreach connected her to resources she didn’t know about, and she’s able to get an MRI every six months in addition to her annual mammogram through her updated insurance coverage.
She encourages others to live a life of self-care and care for their community.
“Put on the oxygen mask first,” she said. “If you’re not healthy, you can’t help anyone else.”
Coverage of health inequalities in the Statesman magazine is funded in part byMJ Murdock Charitable Trustwhich seeks to strengthen the cultural, social, educational and spiritual base of the Pacific Northwest through capacity-building investments in the nonprofit sector.