Stanford Center for Biomedical Ethics, Stanford University, Stanford, California, USA.
Broad Institute of MIT and Harvard, Cambridge, Massachusetts, USA.
Biopreserv Biobank. 2022 Oct;20(5):429-435. doi: 10.1089/bio.2022.0042. Epub 2022 Jun 30.
Studies on the ethics of automating clinical or research decision making using artificial intelligence and other algorithmic tools abound. Less attention has been paid, however, to the scope for, and ethics of, automating decision making within regulatory apparatuses governing the access, use, and exchange of data involving humans for research. In this article, we map how the binary logic flows and real-time capabilities of automated decision support (ADS) systems may be leveraged to accelerate one rate-limiting step in scientific discovery: data access management. We contend that improved auditability, consistency, and efficiency of the data access request using ADS systems have the potential to yield fairer in requests for data largely sourced from biospecimens and biobanked samples. This procedural justice rationale reinforces a broader set of participant and data subject rights that data access committees (DACs) indirectly protect. DACs protect the rights of citizens to benefit from science by bringing researchers closer to the data they need to advance that science. DACs also protect the informational dignities of individuals and communities by ensuring the data being accessed are used in ways consistent with participant values. We discuss the development of the Global Alliance for Genomics and Health Data Use Ontology standard as a test case of ADS for genomic data access management specifically, and we synthesize relevant ethical, legal, and social challenges to its implementation in practice. We conclude with an agenda of future research needed to thoughtfully advance strategies for computational governance that endeavor to instill public trust in, and maximize the scientific value of, health-related human data across data types, environments, and user communities.
关于使用人工智能和其他算法工具对临床或研究决策进行自动化的伦理研究比比皆是。然而，对于管理涉及人类的用于研究的数据的访问、使用和交换的监管机构中决策自动化的范围和伦理问题，关注较少。在本文中，我们绘制了自动化决策支持 (ADS) 系统的二进制逻辑流和实时功能如何被利用来加速科学发现的一个限速步骤：数据访问管理。我们认为，使用 ADS 系统提高数据访问请求的可审核性、一致性和效率有可能使生物标本和生物样本来源的大部分数据的请求更公平。这种程序正义的基本原理加强了更广泛的参与者和数据主体权利，数据访问委员会 (DAC) 间接地保护这些权利。DAC 通过使研究人员更接近他们需要推进科学的数据，来保护公民从科学中受益的权利。DAC 还通过确保正在访问的数据以符合参与者价值观的方式使用，来保护个人和社区的信息尊严。我们讨论了全球基因组和健康数据使用本体标准联盟的发展，作为用于基因组数据访问管理的 ADS 的一个测试案例，并综合了其在实践中实施的相关伦理、法律和社会挑战。我们最后提出了未来需要进行的研究议程，以深思熟虑地推进计算治理策略，努力在数据类型、环境和用户社区中建立对与健康相关的人类数据的公众信任，并最大限度地发挥其科学价值。
