Abstract：
Consent is generally required for research and sharing rich individual-level data but presents additional ethical and legal challenges where participants have diminished decision-making capacity. We formed a multi-disciplinary team to develop best practices for consent in data-intensive dementia research. We recommend that consent processes for research and data sharing support decision-making by persons with dementia, protect them from exploitation, and promote the common good. Broad consent designed to endure beyond a loss of capacity and combined with ongoing oversight can best achieve these goals. Persons with dementia should be supported to make decisions and enabled to express their will and preferences about participation in advance of a loss of capacity. Regulatory frameworks should clarify who can act as a representative for research decisions. By promoting harmonization of consent practices across institutions, sectors, and countries, we hope to facilitate data sharing to accelerate progress in dementia research, care, and prevention.
摘要：
研究和共享丰富的个人数据通常需要同意，但如果参与者的决策能力下降，则会带来额外的道德和法律挑战。我们成立了一个多学科团队，以开发数据密集型痴呆症研究的最佳实践。我们建议研究和数据共享的同意过程支持痴呆症患者的决策，保护他们免受剥削,促进共同利益。旨在承受超出能力丧失的广泛同意，并与持续监督相结合，可以最好地实现这些目标。应支持痴呆症患者做出决定，并在能力丧失之前表达他们对参与的意愿和偏好。监管框架应明确谁可以代表研究决策。通过促进各机构同意做法的统一，部门，和国家,我们希望促进数据共享，以加快痴呆症研究的进展，care,和预防。
