Esmonde Katelyn, Roth Stephen M, Walker Alexis
Berman Institute of Bioethics, Johns Hopkins University, 1809 Ashland Avenue, Baltimore, MD, USA, 21205.
School of Public Health, University of Maryland, 4200 Valley Drive, College Park, MD, USA, 20742.
Technol Soc. 2023 Aug;74. doi: 10.1016/j.techsoc.2023.102297. Epub 2023 Jun 16.
In this paper we explore a new technological intersection in the "big data revolution": the integration of two forms of data, genetic data and fitness tracking data. For example, a small number of direct-to-consumer (DTC) genetic testing companies have recently begun offering customers the ability to link their fitness tracking data with their genetic profile to get personalized diet and exercise recommendations. In this paper we put forward four ethical considerations that should inform potential uses of this health information. Those considerations are: the heightened risks to privacy resulting from combining sensitive data sets; the poor quality of health information that is possible at present in the realm of precision DTC genomics; the limited usefulness of the recommendations; and finally, the cultural assumptions about health and personal responsibility that are embedded within fitness genetic testing and fitness tracking. To conclude, we offer some guidance on how the benefits and risks of returning this type of health information can be weighed.
在本文中,我们探索了“大数据革命”中的一个新的技术交叉领域:两种数据形式的整合,即基因数据和健身追踪数据。例如,少数直接面向消费者(DTC)的基因检测公司最近开始为客户提供将其健身追踪数据与基因档案相链接的能力,以获得个性化的饮食和运动建议。在本文中,我们提出了四项伦理考量,这些考量应指导这种健康信息的潜在用途。这些考量包括:合并敏感数据集导致的隐私风险增加;目前在精准DTC基因组学领域可能存在的健康信息质量不佳;建议的实用性有限;最后,健身基因检测和健身追踪中所蕴含的关于健康和个人责任的文化假设。总之,我们就如何权衡返回这类健康信息的利弊提供了一些指导。