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.

项目摘要 数据共享对于促进公平和最大化大脑投资的影响至关重要 倡议。现在，大脑倡议资金需要数据共享计划，但是迫切需要解决 质量管理的政策和实践指南，以应对道德挑战和利益相关者的关注。数据 共享一直是其他领域的研究对象，例如基因组学，但是有不同的特征 大脑倡议可能会带来独特的挑战并引起新的关注。我们自己的经验和 与进行大脑倡议资助的封闭环或自适应深脑的研究人员的研究 刺激表明共享数据的实践是不一致且不完整的，目的地广泛的协议 这很重要。调查人员通过共享人脑数据提出了道德挑战，包括重复的问题 遵守隐私，同意，互操作性以及竞争商业和专业利益。目标 该提议的内容是让主要利益相关者参与审议过程，以确定挑战和关注点 特定于共享大脑倡议研究中的人类数据，并产生经验知情的政策和 实践选项，以促进大脑计划中负责共享人类数据。在AIM 1中，我们将使用 信息访谈和文档分析，以确定大脑倡议特定的数据共享挑战， 以及相关的政策和实践考虑。在AIM 2中，我们将使用半结构化的访谈和Sur- 评估大脑倡议研究参与者的吸引力，偏好和对数据共享的关注 Ing and Brain隐私。在AIM 3中，我们将与潜水员利益相关者一起使用修改的政策Delphi流程 优先考虑挑战，并生成和评估政策和实践方案，以解决高优先级的chal- 漫长。这项贡献将是重要的，因为它将提供关键的经验数据以告知实践 指南和未来的政策制定。通过吸引潜水员利益相关者，该项目将帮助灌输信任， 避免不平等，并确保大脑计划中当前和未来的数据共享工作的成功。这 项目与多个潜在的利益相关者群体的交往及其使用混合方法具有创新性 并入修改后的策略Delphi框架。这项工作在我们手中是可行的 该团队在先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学专业知识以及 经验社会科学方法的经验。