Madrid Sarah D, Blum-Barnett Erica, Lemke Amy A, Pan Vivian, Paolino Valerie, McGlynn Elizabeth A, Burnett-Hartman Andrea N
Institute for Health Research, Kaiser Permanente Colorado, Aurora, Colorado, USA.
NorthShore University HealthSystem, Evanston, Illinois, USA.
Public Health Genomics. 2022 May 11:1-10. doi: 10.1159/000524462.
Broad participation in genetic research is needed to promote equitable advances in disease treatment and prevention.
The objective of the study was to assess motivations for, and concerns about, genetic research participation.
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.
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.
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.
需要广泛参与基因研究以促进疾病治疗和预防方面的公平进展。
本研究的目的是评估参与基因研究的动机和担忧。
2017 - 2018年冬季，向来自美国7个地区的57331名凯撒医疗集团（KP）成年会员发送了《研究与医疗保健中的遗传学调查》，以评估他们对医疗保健和研究中基因检测的态度。该调查包括一个开放式问题，询问会员愿意或不愿意参与基因研究的原因。对这个问题的开放式文本回复在定性分析软件Dedoose中进行编码，并采用主题分析方法进行分析。代码总结按主要主题、子主题和示例引语进行组织。
在完成调查的10369名参与者中，2645名（25%）提供了评论，描述了他们愿意或不愿意参与涉及基因检测研究的原因。提供文本评论的受访者中，64%为女性，49%为非西班牙裔（NH）白人，17%为亚裔/太平洋岛民，20%为西班牙裔，14%为NH黑人。确定的主要主题有：（1）利他主义；（2）决策与规划；（3）数据使用；（4）数据安全。这些主要主题在每个种族和族裔群体中都是一致的。
为促进广泛参与基因研究，招募材料应解决参与基因研究的主要动机，包括利他主义以及结果用于个人决策的可能性，这一点很重要。研究材料还应解决对基因信息可能被滥用的担忧以及对潜在数据泄露的恐惧。
