A Case Study on Autism in Data Sharing Practices

数据共享实践中的自闭症案例研究

• 批准号: 10835524
• 负责人: Amy L McGuire
• 金额: $ 9.29万
• 依托单位: BAYLOR COLLEGE OF MEDICINE
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-07-15 至 2025-04-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10835524
• 关键词: Address; Agreement; Attitude; BRAIN initiative; Brain; Case Study; Consent; Data; Deep Brain Stimulation; Ensure; Equity; Ethics; Funding; Future; Genomics; Human; Inequity; Interview; Investments; Methods; Participant; Policies; Policy Developments; Practice Guidelines; Privacy; Process; Productivity; Research; Research Personnel; Social Sciences; Structure; Surveys; Trust; United States National Institutes of Health; Work; autism spectrum disorder; data sharing; experience; human data; innovation; interest; interoperability; neuroethics; preference; success

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.

项目概要 数据共享对于促进公平并最大限度地发挥 BRAIN 重大投资的影响至关重要 数据共享计划现在需要 BRAIN Initiative 的资助，但迫切需要取消 - 制定解决道德挑战和利益相关者担忧的具体政策和实践指南。 共享一直是其他领域（例如基因组学）的研究对象，但共享也有其独特的特征 BRAIN 计划可能会带来独特的挑战并引发新的担忧。 与研究人员一起进行 BRAIN Initiative 资助的闭环或适应性深部大脑研究 刺激表明，尽管存在广泛共识，但共享数据的做法不一致且不完整 研究人员提出了共享人类大脑数据的伦理挑战，包括重新研究的问题。 涉及隐私、同意、互操作性以及竞争的商业和专业利益。 该提案的目的是让主要利益相关者参与审议过程，以确定挑战和关切 专门用于共享 BRAIN Initiative 研究中的人类数据并生成基于经验的政策和 在目标 1 中，我们将使用促进负责任地共享人类数据的实践选项。 信息访谈和文件分析，以确定 BRAIN Initiative 特定的数据共享挑战，例如 以及相关政策和实践考虑因素在目标 2 中，我们将使用半结构化访谈和补充。 veys 评估 BRAIN Initiative 研究参与者对数据共享的态度、偏好和担忧 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菲流程来 优先考虑挑战并制定和评估解决高优先级挑战的政策和实践选项 这一贡献将是重要的，因为它将提供关键的经验数据来指导实践。 通过让不同的利益相关者参与进来，该项目将有助于灌输信任、 避免不平等，并确保 BRAIN Initiative 内当前和未来的数据共享工作取得成功。 该项目的创新之处在于与多个不同利益相关者群体的接触以及混合方法的使用 纳入修改后的政策 Delphi 框架中，这项工作在我们手中是可行的，如下所示。 该团队在之前工作中的生产力，以及我们集体的数据共享和神经伦理学专业知识，以及 经验社会科学方法的经验。