Platt Tevah, Platt Jodyn, Thiel Daniel B, Fisher Nicole, Kardia Sharon L R
Life Sciences and Society Program, University of Michigan School of Public Health, 1415 Washington Heights, Suite 4605, Ann Arbor, MI, 48109-2029, USA,
J Community Genet. 2014 Oct;5(4):349-62. doi: 10.1007/s12687-014-0190-4. Epub 2014 Jun 12.
Large population biobanks, important resources for genomic research, also present ethical challenges. The Michigan BioTrust for Health makes dried bloodspots (DBS) leftover from newborn screening, including ~4.5 million collected before 2010 without written consent, available for health research. Absent prospectively gathered consent and/or current engagement with 18- to 29-year olds, little is known about opinions and beliefs from this age group about use of the bloodspots for research. We engaged 2,101 students-BioTrust participants and their peers-at information booths at 20 college campuses across the state to educate youth about the BioTrust and gather information about consent preferences and about hopes and concerns about this public health program. We surveyed student stakeholder DBS research consent preferences and fielded a "postengagement" survey to gauge the attitudes of participants and to evaluate the campus engagement. The most prevalent themes in open-ended comments were support for biobank research and concern that Michiganders are not aware of their participation. While 78 % of students said they would, if asked, opt in to the BioTrust, half of these preferred to be contacted each time a researcher sought to use their DBS. Students reported great interest in the topic and strong likelihood to share what they had learned. BioTrust participants are interested in learning about their role in an initiative whose goals they widely support. Public engagement is particularly important to biobank participants who, absent traditional consent practices, are unaware of their participation. Health-fair style engagements were effective for targeting college-aged stakeholders, communicating complex messages, and likely increasing knowledge. Retrospective biobanks and biobanks that collect proxy consent need policies to respect those who would opt out and will need resources to educate participants and conduct community outreach that is a safeguard to public trust.
大型人群生物样本库是基因组研究的重要资源，但也带来了伦理挑战。密歇根健康生物信托库将新生儿筛查剩余的干血斑（DBS）用于健康研究，其中包括2010年前未经书面同意收集的约450万份样本。由于缺乏对18至29岁人群的前瞻性同意和/或当前参与，对于这个年龄组对将血斑用于研究的意见和信念知之甚少。我们在全州20所大学校园的信息亭，与2101名学生——生物信托库参与者及其同龄人进行互动，向年轻人介绍生物信托库，并收集有关同意偏好以及对该公共卫生项目的希望和担忧的信息。我们调查了学生利益相关者对DBS研究的同意偏好，并进行了一项“参与后”调查，以衡量参与者的态度并评估校园参与情况。开放式评论中最普遍的主题是对生物样本库研究的支持，以及担心密歇根人不知道自己的参与情况。虽然78%的学生表示，如果被询问，他们会选择加入生物信托库，但其中一半人更希望研究人员每次试图使用他们的DBS时都能联系他们。学生们表示对该主题非常感兴趣，并且很有可能分享他们所学到的知识。生物信托库参与者有兴趣了解自己在一个他们广泛支持其目标的项目中的角色。公众参与对于生物样本库参与者尤为重要，因为在缺乏传统同意程序的情况下，他们不知道自己的参与情况。健康博览会式的互动对于针对大学生年龄的利益相关者、传达复杂信息以及可能增加知识是有效的。回顾性生物样本库和收集代理同意的生物样本库需要制定政策以尊重那些选择退出的人，并且需要资源来教育参与者并开展社区外展活动，这是对公众信任的一种保障。
