Sinclair Ka'imi A, Muller Clemma, Noonan Carolyn, Booth-LaForce Cathryn, Buchwald Dedra S
Institute for Research and Education to Advance Community Health, College of Medicine, Washington State University, Seattle, WA, United States.
Child, Family, and Population Health Nursing, University of Washington, Seattle, WA, United States.
Prev Med Rep. 2021 Jan 7;21:101311. doi: 10.1016/j.pmedr.2021.101311. eCollection 2021 Mar.
American Indian and Alaska Native (AI/AN) people are underrepresented in biomedical research, particularly in biospecimen research, yet little research has been conducted to assess AI/AN attitudes about biospecimen donation. Survey data were collected from 278 AI/AN people in Seattle, Washington in 2016 to assess general willingness to donate, background characteristics related to willingness, and circumstances that would increase or decrease willingness to donate biospecimens. Less than half (43%) of participants were willing to donate. General willingness was related to past donation, and trust in how researchers use and store biospecimens. However, willingness to donate for cancer research was 76%. Fear of research exploitation and spiritual beliefs decreased willingness. Among those who were generally unwilling to donate, willingness increased if the biobank was run by a Native American organization, if the participant or family member had cancer and this was the disease being studied, if the community was involved in developing, reviewing, and approving the research, and if the expertise of researchers was known. Among those who were willing, willingness decreased if they had never heard of the research organization, and if the biobank was run by the federal government. Participation of AI/AN people in biobanking initiatives is critical to address health inequities and improve the health of AI/AN people, realize personalized medicine goals, and address the limited generalizability of current clinical and biospecimen research. These results highlight areas in which interventions could be developed to increase AI/AN donation of biospecimens for research with the ultimate goal of reducing health disparities.
美国印第安人和阿拉斯加原住民（AI/AN）在生物医学研究中的代表性不足，尤其是在生物样本研究方面，然而，很少有研究评估AI/AN对生物样本捐赠的态度。2016年，从华盛顿州西雅图市的278名AI/AN人群中收集了调查数据，以评估捐赠的总体意愿、与意愿相关的背景特征，以及会增加或降低生物样本捐赠意愿的情况。不到一半（43%）的参与者愿意捐赠。总体意愿与过去的捐赠以及对研究人员如何使用和存储生物样本的信任有关。然而，为癌症研究捐赠的意愿为76%。对研究剥削的恐惧和精神信仰降低了捐赠意愿。在那些通常不愿意捐赠的人中，如果生物样本库由美国本土组织运营、参与者或家庭成员患有癌症且这是正在研究的疾病、社区参与了研究的开发、审查和批准，以及了解研究人员的专业知识，那么他们的捐赠意愿会增加。在那些愿意捐赠的人中，如果他们从未听说过研究机构，以及生物样本库由联邦政府运营，那么他们的捐赠意愿会降低。AI/AN人群参与生物样本库倡议对于解决健康不平等问题、改善AI/AN人群的健康状况、实现个性化医疗目标以及解决当前临床和生物样本研究普遍适用性有限的问题至关重要。这些结果突出了可以制定干预措施的领域，以增加AI/AN人群为研究捐赠生物样本，最终目标是减少健康差距。
