Background: Most genetics studies lack the diversity necessary to ensure that all groups benefit from genetic research. Objectives: To explore facilitators and barriers to genetic research participation. Methods: We conducted a survey on genetics in research and healthcare from November 15, 2017 to February 28, 2018 among adult Kaiser Permanente (KP) members who had been invited to participate in the KP biobank (KP Research Bank). We used logistic regression to calculate adjusted odds ratios (ORs) and 95% confidence intervals (CIs) comparing the willingness to participate in genetic research under different return of results scenarios and genetic discrimination concerns between groups, according to their demographic characteristics. Results: A total of 57,331 KP members were invited to participate, and 10,369 completed the survey (18% response rate). Respondents were 65% female, 44% non-Hispanic White (NH White), 22% Asian/Native Hawaiian or other Pacific Islander (Asian/PI), 19% non-Hispanic Black (NH Black), and 16% Hispanic. Respondents willing to participate in genetic research ranged from 22% with no results returned to 87% if health-related genetic results were returned. We also found variation by race/ethnicity; when no results were to be returned, Asian/PIs, Hispanics, and NH Blacks were less likely to want to participate than NH Whites (p < 0.05). However, when results were returned, disparities in the willingness to participate disappeared for NH Blacks and Hispanics. Genetic discrimination concerns were more prevalent in Asian/PIs, Hispanics, and NH Blacks than in NH Whites (p < 0.05). Conclusions: Policies that prohibit the return of results and do not address genetic discrimination concerns may contribute to a greater underrepresentation of diverse groups in genetic research.

中文翻译：

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研究相关基因检测结果的回归和基因歧视问题：不同群体中基因研究参与的促进因素和障碍

背景：大多数遗传学研究缺乏确保所有群体都能从遗传研究中受益所需的多样性。目标：探索遗传研究参与的促进因素和障碍。方法：我们于 2017 年 11 月 15 日至 2018 年 2 月 28 日对受邀参加 KP 生物银行（KP 研究银行）的成年 Kaiser Permanente (KP) 成员进行了研究和医疗保健中的遗传学调查。我们使用逻辑回归来计算调整后的优势比 (OR) 和 95% 置信区间 (CI)，根据他们的人口统计特征，比较不同结果回报情景下参与基因研究的意愿和群体之间的遗传歧视问题。结果：共有 57,331 名 KP 成员受邀参加，其中 10, 369 人完成了调查（回复率为 18%）。受访者为 65% 的女性、44% 的非西班牙裔白人 (NH White)、22% 的亚洲/夏威夷原住民或其他太平洋岛民 (Asian/PI)、19% 的非西班牙裔黑人 (NH Black) 和 16% 的西班牙裔。愿意参与基因研究的受访者从没有结果的 22% 到返回健康相关基因结果的 87% 不等。我们还发现了种族/民族的差异；当没有结果返回时，亚裔/PI、西班牙裔和 NH 黑人比 NH 白人更不愿意参与 (p < 0.05)。然而，当结果返回时，NH 黑人和西班牙裔在参与意愿方面的差异消失了。与 NH 白人相比，亚洲/PI、西班牙裔和 NH 黑人中的遗传歧视问题更为普遍（p < 0.05）。结论：