Return of Research-Related Genetic Test Results and Genetic Discrimination Concerns: Facilitators and Barriers of Genetic Research Participation in Diverse Groups
Return of Research-Related Genetic Test Results and Genetic Discrimination Concerns: Facilitators and Barriers of Genetic Research Participation in Diverse Groups
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DOI：
10.1159/000507056
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发表时间：
2020-06-01
影响因子：
1.7
通讯作者：
McGlynn, Elizabeth A.
中科院分区：
文献类型：
--
作者：
Burnett-Hartman, Andrea N.;Blum-Barnett, Erica;McGlynn, Elizabeth A.
背景：大多数遗传学研究缺乏确保所有群体从遗传学研究中受益所需的多样性。目标：探索参与基因研究的促进因素和障碍。方法：我们于2017年11月15日至2018年2月28日对受邀参加KP生物库（KP研究银行）的成年Kaiser Permanente (KP)会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比值比 (OR) 和 95% 置信区间 (CI)，比较不同结果返回情景下参与基因研究的意愿以及群体之间的遗传歧视问题（根据人口统计学特征）。结果：共有 57,331 名 KP 会员受邀参与，10,369 名会员完成调查（回复率为 18%）。受访者中 65% 为女性、44% 非西班牙裔白人 (NH White)、22% 为亚洲人/夏威夷原住民或其他太平洋岛民 (Asian/PI)、19% 非西班牙裔黑人 (NH Black) 和 16% 西班牙裔。愿意参与基因研究的受访者比例从没有返回结果的 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；当没有返回结果时，亚裔/PI、西班牙裔和新罕布什尔州黑人比新罕布什尔州白人更不愿意参与（p < 0.05）。然而，当结果返回时，新罕布什尔州黑人和西班牙裔的参与意愿差异消失了。遗传歧视问题在亚裔/PI、西班牙裔和新罕布什尔州黑人中比在新罕布什尔州白人中更为普遍（p < 0.05）。结论：禁止返回结果且不解决基因歧视问题的政策可能会导致基因研究中不同群体的代表性进一步不足。
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.