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 is focused on better understanding the causes of and ways to prevent cancer. And it’s looking for more people to participate in the free screening, particularly communities of color.
Participants 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 that 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 up to 10 percent of all cancers. Examples include hereditary breast and ovarian cancer syndrome and Lynch syndrome, which increases the risk for colorectal cancers.
About 1 percent of Americans have hereditary breast and ovarian cancer syndrome or Lynch syndrome, but fewer than 30 percent of these individuals know they have it, according to an estimate from a 2019 study.
While other universities have conducted population-based cancer research, the Healthy Oregon Project uses an app to recruit and engage with participants, which is unique to the 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 Healthy Oregon Project Genetic Cancer Risk Screening Kit.
More than 30,000 individuals already have enrolled in the study, representing about 1 percent of Oregon’s population.
The Healthy Oregon Project hopes to make the genetic screening process, including the test kit and app, also available in Spanish.
How the project works
Healthy Oregon Project genetic screening is a five-step process that may take four to six months.
After enrollment, individuals should receive their Healthy Oregon Project Kit within two weeks. This 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 Healthy Oregon Project 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 Healthy Oregon Project team and given an anonymous identifier to protect the identity of the participant.
Oregon Health & Sciences University’s Integrated Genomics Lab, directed by Dr. Chris Harrington, first receives the sample. The lab extracts and quantifies DNA from the sample, creating a DNA sample database as it does so.
The scientists can process 96 samples in about two and a half days thanks to their lab robots, one for DNA extraction and another for making sure all samples have the same concentration of DNA.
After leaving the Integrated Genomics Lab, the samples travel to the Knight Diagnostics Lab, where the DNA is sequenced and screened for the 32 cancer risk gene variants.
The Knight Diagnostics 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 Healthy Oregon Project app. Participants are not contacted again by the project team.
If the results are positive, participants are first contacted by the Healthy Oregon Project’s genetic counselor, Kelly Hamman, who explains the results and discusses measures for decreasing the risk of cancer. After this initial consultation, a printed copy of the results is sent to participants and is available to them in the Healthy Oregon Project app.
One month after the initial consultation, participants are contacted by Ryan Lutz, the Healthy Oregon Project’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.
The Healthy Oregon Project recruits participants primarily through Facebook, Instagram and Twitter accounts that are run by the project’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,” said Dr. Jackilen Shannon, associate director of Knight Community Outreach and Engagement. “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 Oregon Health & Sciences University’s ethics committee requirements. This data is intended for scientific research only.
Insurers may be able to access an individual’s Oregon Health & Sciences University medical records, but under the federal genetic privacy law called the Genetic Information Nondiscrimination Act, they may not discriminate based on positive results.
The Healthy Oregon Project began in 2018 at the Oregon Health & Sciences University Knight Cancer Institute when Dr. Paul Spellman, co-director of the Healthy Oregon Project, began brainstorming an idea to engage Oregonians with cancer prevention and early detection research.