Exploring Attitudes About Data Disclosure and Data-Sharing in Genomics Research

描述（由申请人提供）：两个主要问题引起了人们的极大关注，导致制定了一系列关于生物医学研究中数据披露和数据共享的政策。虽然数据的披露与所有类型的生物医学研究有关，但由于数据的一些独特方面和该领域的高公众形象，它在遗传学和基因组学研究方面获得了特别的关注。一般来说，大多数研究者出于多种原因不提供数据结果的访问权限，包括时间限制、成本以及由于许多研究结果的不确定性而造成的伤害风险。尽管目前有证据表明，临床研究中的研究参与者希望获得研究结果，即使临床效用很小，但这种做法似乎并不常见。同样，随着大多数基因组学数据集的数字格式，数据共享实践也得到了扩展。虽然传统的数据共享方法包括在专业会议上发表和介绍，但基因组数据集更适合通过公共和私人数据库进行在线数据共享，这可能会加剧参与者对隐私和遗传歧视的担忧。事实上，人类基因组计划和人类基因组单体型图等大型项目已经制定并实施了开放获取政策。几乎没有进行任何研究来确定公众对这些重要问题的态度和理解。该提案旨在通过一系列焦点小组让公众，特别是来自少数群体的公众参与进来，以增加我们对基因组学研究中数据披露和数据共享的公众态度以及当前政策和做法可能对研究招募率产生的潜在影响的理解。由于目前的许多公共政策似乎没有征求公众对这些问题的意见，这些数据将有助于制定适当的数据披露和数据共享政策，并作为进一步探索和分析公众对基因组学研究相关问题的态度的出发点。随着遗传学和基因组学领域的公共卫生研究继续扩大，在制定新政策时必须考虑公众的态度，以确保未来研究参与者的尊重、安全和利益。大规模基因组学研究计划的成功将取决于公众的支持和参与，因此，获得他们的意见至关重要。

DESCRIPTION (provided by applicant): Two major issues have garnered significant attention leading to the development of a range of policies regarding data disclosure and data-sharing in biomedical research. While the disclosure of data is relevant to all types of biomedical research, it has garnered particular attention with respect to genetics and genomics research due to some of the unique aspects of the data and the high public profile of the field. In general, most investigators do not provide access to data results for a number of reasons including time constraints, cost, and risk of harm due to the uncertain nature of many research results. Despite current evidence that research participants in clinical studies would like the option of obtaining research results even if of little clinical utility, the practice does not appear to be common. Similarly, data-sharing practices have expanded with the digital format of most genomics datasets. Whereas traditional methods of data-sharing include publication and presentations at professional meetings, genomic datasets are more amenable to online data-sharing through public and private databases, which may heighten participant concerns about privacy and genetic discrimination. Indeed, large-scale projects such as the Human Genome Project and the HapMap have developed and implemented open access policies. Little research has been conducted to ascertain the public's attitudes and understanding of these important issues. This proposal aims to engage members of the public, particularly those from minority communities, through a series of focus groups to increase our understanding of public attitudes about data disclosure and data-sharing in genomics research and the potential impact current policies and practices may have on study recruitment rates. Since many of the current public policies do not appear to have sought input from the public regarding these issues, these data will help inform the development of appropriate data disclosure and data-sharing policies and serve as a launching point for further exploration and analysis of public attitudes on issues relevant to genomics research. As public health research in the fields of genetics and genomics continues to expand, it will be critical to consider the public attitudes in the development of new policies to ensure the respect, safety and interest of future research participants. The success of large-scale genomics research initiatives will depend on the support and participation of the public and therefore, their views are critically important to obtain.