BRAINShare: Sharing Data in BRAIN Initiative Studies

项目总结 数据共享对于促进公平和最大限度地发挥对大脑的重大投资的影响至关重要 主动权。现在需要数据共享计划来为大脑计划提供资金，但迫切需要取消 制定应对道德挑战和利益相关者关切的具体政策和实践指南。数据 分享一直是基因组学等其他领域的研究对象，但 大脑倡议，这可能会带来独特的挑战和新的关切。我们自己的经历和 研究人员进行大脑倡议资助的闭合环或适应性深部脑研究 刺激表明，共享数据的做法是不一致和不完整的，尽管人们普遍同意这一点 这很重要。调查人员在共享人脑数据方面提出了伦理挑战，包括重新 涉及隐私、同意、互操作性以及相互竞争的商业和专业利益。目标是 这项提案的目的是让主要利益攸关方参与审议进程，以确定挑战和关切 具体到共享来自大脑倡议研究的人类数据，并生成经验知情的政策和 实践各种选择，以促进在大脑倡议范围内负责任地共享人类数据。在目标1中，我们将使用 信息访谈和文档分析，以确定特定于Brain Initiative的数据共享挑战，如 以及相关的政策和实践考虑。在目标2中，我们将使用半结构化访谈和调查- Veys将评估Brain Initiative研究参与者对数据共享的态度、偏好和担忧 ING和大脑隐私。在目标3中，我们将与不同的利益相关者一起采用修改后的政策德尔福流程，以 确定挑战的优先顺序，生成并评估应对高优先级挑战的政策和实践选项- 太长了。这一贡献将是重大的，因为它将提供关键的经验数据来指导实践 指导方针和未来的政策发展。通过让不同的利益相关者参与，该项目将有助于灌输信任， 避免不平等，并确保在大脑倡议范围内当前和未来的数据共享努力取得成功。这 项目在与多个不同利益相关者群体的接触以及混合方法的使用方面具有创新性 合并到修改后的策略Delphi框架中。这项工作在我们手中是可行的，如以下所示 这个团队在以前的工作中的生产力，以及我们的集体数据共享和神经伦理专业知识，以及 有经验的社会科学方法。

PROJECT SUMMARY Data sharing is essential to promote equity and maximize the impact of the significant investment in the BRAIN Initiative. Data sharing plans are now required for BRAIN Initiative funding, but there is an urgent need to de- velop specific policies and practice guidelines that address ethical challenges and stakeholder concerns. Data sharing has been the object of study in other fields, such as genomics, but there are distinctive features of the BRAIN Initiative that are likely to present unique challenges and raise new concerns. Our own experience and research with investigators conducting BRAIN Initiative-funded studies of closed loop or adaptive deep brain stimulation suggests that the practice of sharing data is inconsistent and incomplete, despite broad agreement that it is important. Investigators raised ethical challenges with sharing human brain data, including issues re- lated to privacy, consent, interoperability, and competing commercial and professional interests. The objective of this proposal is to engage key stakeholders in a deliberative process to identify challenges and concerns specific to sharing human data from BRAIN Initiative studies and generate empirically informed policy and practice options to facilitate responsible sharing of human data within the BRAIN Initiative. In Aim 1, we will use informational interviews and document analysis to identify BRAIN Initiative-specific data sharing challenges, as well as relevant policy and practice considerations. In Aim 2, we will use semi-structured interviews and sur- veys to evaluate BRAIN Initiative research participants’ attitudes, preferences, and concerns about data shar- ing and brain privacy. In Aim 3, we will employ a modified policy Delphi process with diverse stakeholders to prioritize challenges and generate and evaluate policy and practice options that address high-priority chal- lenges. This contribution will be significant because it will provide critical empirical data to inform practice guidelines and future policy development. By engaging diverse stakeholders, this project will help instill trust, avoid inequities, and ensure success of current and future data sharing efforts within the BRAIN Initiative. This project is innovative in its engagement with multiple diverse stakeholder groups and its use of mixed methods incorporated into a modified policy Delphi framework. The work is feasible in our hands as demonstrated by the productivity of this team in prior work, as well as our collective data sharing and neuroethics expertise, and experience with empirical social science methods.