The Rutgers Cancer Institute of New Jersey and the Office of Community Outreach and Engagement have launched a Citizen Scientist program that enables scientists and members of the public to work together on making advancements in cancer research, according to a press release.
Through seven weeks of video modules, the program teaches community members without scientific backgrounds about the cancer research process, covering topics such as research ethics and design, cultural competency and bioinformatics, said Michelle Jansen, community outreach coordinator for the program.
Participants become citizen scientists upon completion of the program, Jansen said. They may choose to serve as active members of either the Rutgers Cancer Institute Scientific Review Board or Institutional Review Board, where they review proposals, promotional material and consent forms and ensure that research publications are written in a community-friendly format.
“The goal of the program is to really engage our community members with our research scientists,” Jansen said. “It’s really, really important to be able to connect the community members with our researchers ... to make sure the needs of the communities are reflected within the research that’s being done.”
Citizens scientists can also conduct community education through hosting workshops on topics they are passionate about and creating informational videos on clinical trials, she said.
The program is set to run once per year, with the next cohort of citizen scientists beginning in September 2021, Jansen said. It has had one run so far, which went for seven weeks from April 24 to June 5 last year. This first session had 10 participants who have since graduated from the program.
“Any adult above the age of 18 can definitely join, (and) we’re always looking for a very diverse, representative group of people for our community,” Jansen said.
Harry Garcia, 1 of the 10 graduates of the program, said the course exceeded his expectations in many ways.
“When I began to take the class, it was given in a language and in a style that was comfortable for me to digest and consume,” Garcia said. “So, it was a tremendous amount of comfort, knowing that I didn’t have to be a biologist or a cancer research scientist to begin to unravel the key components of what was being taught.”
Clinical trials were a mystery for him until the program taught him how they worked, he said. Learning about the design and significance of clinical trials led him to understand their value in finding cures for chronic illnesses.
Ralph Stowe, another graduate of the course, said he enrolled in order to learn more about the clinical trials being conducted at Rutgers. As one of the founders of the Jazz for Prostate Cancer Awareness program, he felt that the Citizen Scientist program aligned with both his professional and personal interests.
“(The program) allowed me to understand, ‘What is a clinical trial? What is the format of a clinical trial?’” Stowe said. “And that ... information was intriguing as an advocate for prostate cancer.”
Garcia and Stowe said the course was invaluable in teaching them about the history of medical research, which includes not only medical advancements, but also the history of injustices committed against communities of color. Garcia said the course provided an open environment for discussion about the events that led to a general mistrust of medical research by these communities, such as the Tuskegee syphilis experiment.
Concepts such as representative samples, clinical trial safety and vaccine development were also relevant points of discussion for the program, as they were happening in real-time, Jansen said.
“We had started this program shortly after the pandemic started, and the vaccines were being developed, so it gave us a really, really great platform to take all of the conceptual information and then apply it in the real world to what was happening all around us,” she said.
Garcia said his participation in the course has allowed him to engage with the medical research process by working on projects that deal with disparities in healthcare access, cancer research and clinical trials focusing on historically underrepresented communities.
He and Stowe said the program makes learning much more accessible to the general public and opens doors for future community engagement in medical research.
“We want to really improve cancer health outcomes for the state, not just for this generation, but for many generations to come,” Jansen said.