Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada.
Eur J Hum Genet. 2012 Aug;20(8):837-43. doi: 10.1038/ejhg.2012.24. Epub 2012 Feb 15.
Even as debate continues about the putative obligation to proactively report genetic research results to study participants, there is an increasing need to attend to the obligations that might cascade from any initial report. We conducted an international, quasi-experimental survey of researchers involved in autism spectrum disorders (ASD) and cystic fibrosis (CF) genetics to explore perceived obligations to ensure updated information or relevant clinical care subsequent to any initial communication of research results, and factors influencing these attitudes. 5-point Likert scales of dis/agreement were analyzed using descriptive and multivariate statistics. Of the 343 respondents (44% response rate), large majorities agreed that in general and in a variety of hypothetical research contexts, research teams that report results should ensure that participants gain subsequent access to updated information (74-83%) and implicated clinical services (79-87%). At the same time, researchers perceived barriers restricting access to relevant clinical care, though this was significantly more pronounced (P<0.001) for ASD (64%) than CF (34%). In the multivariate model, endorsement of cascading obligations was positively associated with researcher characteristics (eg, clinical role/training) and attitudes (eg, perceived initial reporting obligation), and negatively associated with the initial report of less scientifically robust hypothetical results, but unaffected by perceived or hypothetical barriers to care. These results suggest that researchers strongly endorse information and care-based obligations that cascade from the initial report of research results to study participants. In addition, they raise challenging questions about how any cascading obligations are to be met, especially where access challenges are already prevalent.
尽管关于主动向研究参与者报告遗传研究结果的假定义务仍存在争议，但越来越需要关注可能由初始报告引发的义务。我们对参与自闭症谱系障碍 (ASD) 和囊性纤维化 (CF) 遗传学研究的研究人员进行了一项国际准实验调查，以探讨在任何初始研究结果沟通后，确保更新信息或相关临床护理的感知义务，以及影响这些态度的因素。使用描述性和多变量统计方法分析了 5 分李克特量表的不/同意程度。在 343 名受访者中（44%的回复率），绝大多数人普遍同意，在一般和各种假设的研究情境中，报告结果的研究团队应确保参与者随后获得更新的信息（74-83%）和相关的临床服务（79-87%）。与此同时，研究人员认为存在限制获得相关临床护理的障碍，但这种情况在 ASD（64%）中比 CF（34%）更为明显（P<0.001）。在多变量模型中，对级联义务的认可与研究人员的特征（例如，临床角色/培训）和态度（例如，感知的初始报告义务）呈正相关，与初始报告不太稳健的假设结果呈负相关，但不受感知或假设护理障碍的影响。这些结果表明，研究人员强烈支持从研究结果初始报告到研究参与者的信息和基于护理的义务级联。此外，它们提出了具有挑战性的问题，即如何满足任何级联义务，特别是在已经存在获取挑战的情况下。
