现在一起:数据工作在合成数据时代推进隐私、科学和健康。

Q2 Computer Science
Lindsay Fernández-Rhodes, Jennifer K Wagner
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引用次数: 0

摘要

生物医学领域的数据实践与公众对这些数据实践的理解之间存在脱节,而且这种脱节每天都在迅速扩大(随着合成数据和数字双胞胎的出现以及更广泛采用的人工智能(AI)/机器学习工具)。仅靠透明度不足以弥合这一差距。与此同时,在从事生物计算和数字健康研究时,法律、法规和机构/计划政策日益复杂,这使得那些想要“把事情做好”或“做正确的事情”的人越来越困难。强制性数据保护义务差别很大,有时侧重于数据类型(以及细微的定义和范围参数)、所涉及的行为者/实体或数据主体的居住地。其他挑战来自庆祝生物计算发现和数字健康创新的尝试,这往往将公平和准确的传播转变为夸大的炒作(例如,确保对未来项目的财政投资或导致更有利的任期和晋升决定)。例如,如果合成数据被公众视为“假数据”,或者数字双胞胎被视为“虚构的”病人,那么对科学家和科学专业知识的信任就会迅速受到侵蚀。研究人员似乎越来越意识到通过增加多样性和社区参与来加强他们的工作并促进其可持续性的科学和道德必要性。此外,越来越多的人认识到,要使科学数据成为有意义的、可操作的信息、知识和智慧,“数据工作”是必要的,这不仅对科学家来说是如此,对获得这些数据或与这些数据相关的个人也是如此。生物计算过程中的公平以及生物计算的利益和负担分配的公平都需要持续发展、实施和改进嵌入的伦理、法律和社会影响(ELSI)研究实践。本次研讨会旨在培养对这些问题的跨学科讨论,并强调那些通常被认为是“软技能”的技能和能力,这些技能和能力在传统培训和专业发展计划中被优先考虑为其他技能的边缘技能。参加本次研讨会的数据科学家将更好地将ELSI实践嵌入到他们的研究中。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
All Together Now: Data Work to Advance Privacy, Science, and Health in the Age of Synthetic Data.

There is a disconnect between data practices in biomedicine and public understanding of those data practices, and this disconnect is expanding rapidly every day (with the emergence of synthetic data and digital twins and more widely adopted Artificial Intelligence (AI)/Machine Learning tools). Transparency alone is insufficient to bridge this gap. Concurrently, there is an increasingly complex landscape of laws, regulations, and institutional/ programmatic policies to navigate when engaged in biocomputing and digital health research, which makes it increasingly difficult for those wanting to "get it right" or "do the right thing." Mandatory data protection obligations vary widely, sometimes focused on the type of data (and nuanced definition and scope parameters), the actor/entity involved, or the residency of the data subjects. Additional challenges come from attempts to celebrate biocomputing discoveries and digital health innovations, which frequently transform fair and accurate communications into exaggerated hype (e.g., to secure financial investment in future projects or lead to more favorable tenure and promotion decisions). Trust in scientists and scientific expertise can be quickly eroded if, for example, synthetic data is perceived by the public as "fake data" or if digital twins are perceived as "imaginary" patients. Researchers appear increasingly aware of the scientific and moral imperative to strengthen their work and facilitate its sustainability through increased diversity and community engagement. Moreover, there is a growing appreciation for the "data work" necessary to have scientific data become meaningful, actionable information, knowledge, and wisdom-not only for scientists but also for the individuals from whom those data were derived or to whom those data relate. Equity in the process of biocomputing and equity in the distribution of benefits and burdens of biocomputing both demand ongoing development, implementation, and refinement of embedded Ethical, Legal and Social Implications (ELSI) research practices. This workshop is intended to nurture interdisciplinary discussion of these issues and to highlight the skills and competencies all too often considered "soft skills" peripheral to other skills prioritized in traditional training and professional development programs. Data scientists attending this workshop will become better equipped to embed ELSI practices into their research.

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