Research Participants' Perspectives on Genotype-Driven Research Recruitment

Abstract

Genotype-Driven Recruitment is a potentially powerful approach for studying human genetic variation but presents ethical challenges. We conducted in-depth interviews with research participants in six studies where such recruitment occurred. Nearly all responded favorably to the acceptability of recontact for research recruitment, and genotype-driven recruitment was viewed as a positive sign of scientific advancement. Reactions to questions about the disclosure of individual genetic research results varied. Common themes included explaining the purpose of recontact, informing decisions about further participation, reciprocity, “information is valuable,” and the possibility of benefit, as well as concerns about undue distress and misunderstanding. Our findings suggest contact about additional research may be least concerning if it involves a known element (e.g., trusted researchers). Also, for genotype-driven recruitment, it may be appropriate to set a lower bar for disclosure of individual results than the clinical utility threshold recommended more generally.

The Meaning of Genetic Research Results: Reflections from Individuals with and without a Known Genetic Disorder

“…With regard to the issue of whether individual genetic results should be provided as part of that recruitment, our findings are similar to those found at other sites comprising the larger study of genotype-driven recruitment (Beskow et al, 2011). Specifically, respondents advocated a lower threshold for return of individual genetic research than is generally recommended (Beskow et al, 2011).…”

“…Specifically, respondents advocated a lower threshold for return of individual genetic research than is generally recommended (Beskow et al, 2011). Yet, as the larger study also reported, ideas varied between the different study populations regarding the specific circumstances under which research results should be conveyed as part of that recruitment.…”

“…The research presented below was part of a larger three-site study exploring participants’ perspectives on genotype-driven research recruitment (Beskow et al, 2011). Specifically, we interviewed two groups of research participants (patients with cystic fibrosis, selected from a prior genetic study, and healthy volunteers, selected from a genetic biobank) who took part in a genotype-based cystic fibrosis study, and who were both informed, as part of recruitment, that they had one of two genetic variants under study.…”

Return of Genetic Research Results to Participants and Families: IRB Perspectives and Roles

“…To assess this response rate, we conducted a brief literature search for publications reporting the results of online surveys of IRB chairs and/or members. Among the seven identified for which a response rate could be calculated, 5 rates ranged from 18–52% (mean=39%, median=44%). Two had response rates below 20%, three reported rates in the low- to mid-40%s, and two achieved rates in the low 50%s.…”

Contribution of Biomedical Research Ethics in Public Health Advances

“…They favor predictable, low-cost public health measures and expanded access to basic care during the current decade of austerity [11,26]. Other policymakers question whether spending on new devices and high-cost bioengineered drugs produce commensurate clinical value [7], 39. Such criticism is driven by estimates that new technology of marginal benefit (as measured by reduced disease burden or improved longevity) accounts for one half to two thirds of health care inflation in Western countries [31,46] Even the commercial value of biomedical research is questioned by some companies, as is reflected by their reduced rates of research and development because of unfavorable returns as compared with marketing [1,17], or mergers and acquisitions [6].…”