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限度地发挥对BRAIN的重大投资的影响至关重要 倡议数据共享计划现在需要BRAIN倡议的资金，但迫切需要去- 职业道德和职业操守办公室针对道德挑战和利益攸关方关切的具体政策和做法准则。数据 共享一直是其他领域的研究对象，如基因组学，但也有显着的特点， BRAIN计划可能会带来独特的挑战并引发新的担忧。我们自己的经验和 研究人员进行大脑倡议资助的闭环或适应性深部脑研究 模拟结果表明，尽管广泛同意，但共享数据的做法是不一致和不完整的 这很重要研究人员提出了共享人脑数据的伦理挑战，包括重新评估人类大脑的问题。 涉及隐私、同意、互操作性以及竞争的商业和专业利益。客观 这项建议的一个重要方面是让主要利益攸关方参与审议进程，以确定挑战和关切 具体到分享来自BRAIN Initiative研究的人类数据，并根据经验制定政策， 实践选项，以促进负责任地共享人类数据在大脑倡议。在目标1中，我们将使用 信息访谈和文件分析，以确定BRAIN计划特定的数据共享挑战， 以及相关的政策和做法考虑。在目标2中，我们将使用半结构化面试， 评估BRAIN Initiative研究参与者对数据共享的态度、偏好和担忧， 和大脑隐私。在目标3中，我们将与不同的利益相关者采用修改后的政策德尔菲流程来 确定挑战的优先次序，制定和评估解决高度优先挑战的政策和做法选择， 是的这一贡献将是重要的，因为它将提供关键的经验数据，为实践提供信息 指导方针和今后的政策发展。通过让不同的利益相关者参与进来，这个项目将有助于灌输信任， 避免不公平，并确保BRAIN计划内当前和未来数据共享工作的成功。这 该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德尔菲框架中。这项工作在我们手中是可行的， 该团队在之前工作中的生产力，以及我们的集体数据共享和神经伦理学专业知识，以及 经验主义社会科学方法。