Understanding Decliners
Understanding and Engaging Decliners to Genetic Sequencing Research in the PE-CGS Network
Project Snapshot
Did you know?
Understanding why cancer patients with limited research data and those diagnosed with rare cancers decline to participate in cancer genomic sequencing research is essential for improving care.
Goal
To identify the reasons behind declining participation among cancer patients with limited research data and those diagnosed with rare cancers.
Method
- Develop a scoping review about studies examining the determinants of declining genomic research.
- Collect screening data on rates of decline by cancer types, and/or recruitment approach to identify patterns influencing decliners’ decision.
- Interview/survey a subset of decliners to better understand their reasons for declining.
- Combine existing research with findings to create a guide to improve future recruitment.
Implications
Understanding the reasons for declining participation in research will help in reducing decliner rates and increase participation by developing appropriate response to enhance participant engagement protocols in cancer research.
Project Deep Dive
Summary:
Genomic sequencing data predominantly comes from well-studied groups and those with common cancer types. To improve research and care populations with limited research data, it is crucial to understand why people choose or decline to participate in cancer genomic sequencing research. However, limited information exists on those who decline participation, particularly among individuals from groups with limited research data and those with rare cancers. Researchers from four PE-CGS Network Research Centers—JUNIPER, COPECC, WU-PE-CGS, and Count Me In—will examine participation decisions to identify the reasons behind declining participation and develop appropriate responses to improve participant engagement protocols.
Researchers will gather screening data on recruitment details and cancer types from decliners in each target population. They will collect additional qualitative/survey data from a subset of decliners to understand their perceived reasons for declining. Alongside data collection, researchers will develop a scoping review of existing literature about those who decline genomic research. Finally, the team will use these findings to develop a guidance document outlining reasons for declining and propose strategies to address concerns related to recruitment and engagement.
Understanding why certain populations decline to participate in cancer genomic sequencing research will help refine study recruitment strategies, ultimately leading to broader participation. The study aims to reduce decliner rates and enhance participation by developing practical responses to concerns about participation. Ultimately, this will lead to more comprehensive cancer research, potentially improving outcomes for all individuals affected by cancer.
Progress to date (as of May 2024):
The project team is developing a study protocol for a scoping review in the summer of 2024. The four participating research centers are currently collecting and comparing eligibility data on people who decline to participate in genomic research, to determine what data components are acceptable for use according to the Institutional Review Board (IRB) guidelines at each site. Survey questions have been made consistent across the sites while accommodating individual processes. The research centers are at various stages of the review process of their research plans with the IRB.