“A Gift to My Family for Their Future”: Attitudes about Genetic Research Participation

Abstract

<b><i>Background:</i></b> Broad participation in genetic research is needed to promote equitable advances in disease treatment and prevention. <b><i>Objectives:</i></b> The objective of the study was to assess motivations for, and concerns about, genetic research participation. <b><i>Methods:</i></b> The Genetics in Research and Health Care Survey was sent in winter 2017–2018 to 57,331 adult Kaiser Permanente (KP) members from 7 US regions to assess attitudes about genetic testing in health care and research. The survey included an open-ended question on why members would or would not participate in genetic research. Open text responses to this question were coded in the qualitative analysis software Dedoose and analyzed using a thematic analysis approach. Code summaries were organized by major themes, subthemes, and exemplary quotes. <b><i>Results:</i></b> Of the 10,369 participants who completed the survey, 2,645 (25%) provided a comment describing reasons they would or would not participate in research involving genetic testing. Respondents who provided a text comment were 64% female, 49% non-Hispanic (NH) White, 17% Asian/Pacific Islander, 20% Hispanic, and 14% NH Black. The primary themes identified were (1) altruism; (2) decision-making and planning; (3) data use; and (4) data security. These major themes were consistent across each race and ethnic group. <b><i>Conclusions:</i></b> To promote broad participation in genetic research, it is important that recruitment materials address the primary motivators for genetic research participation, including altruism and the potential use of results for personal decision-making. Study materials should also address concerns about possible misuse of genetic information and fears over potential data breaches.