Department of Bioengineering, Istanbul Medeniyet University, Istanbul, Turkey.
New Bioeth. 2021 Dec;27(4):320-333. doi: 10.1080/20502877.2021.1996965. Epub 2021 Nov 7.
The digital revolution has disruptively reshaped the way health services are provided and how research is conducted. This transformation has produced novel ethical challenges. The digitalization of health records, bioinformatics, molecular medicine, wearable biomedical technologies, biotechnology, and synthetic biology has created new biological data niches. How these data are shared, stored, distributed, and analyzed has created ethical problems regarding privacy, trust, accountability, fairness, and justice. This study investigates issues related to data-sharing permissions, fairness in secondary data distribution, and commercial and political conflicts of interest among individuals, companies, and states. In conclusion, establishing an agency to act as deputy trustee on behalf of individuals is recommended to intermediate the complex nature of informed consent. Focusing on decentralized digital technologies is recommended in order to catalyze the utilization of data and prevent discrimination without circulating data unnecessarily.
数字革命颠覆性地重塑了医疗服务的提供方式和研究的开展方式。这种转变带来了新的伦理挑战。健康记录的数字化、生物信息学、分子医学、可穿戴生物医学技术、生物技术和合成生物学创造了新的生物数据利基。这些数据如何共享、存储、分发和分析，引发了关于隐私、信任、问责制、公平和正义的伦理问题。本研究调查了与数据共享许可、二次数据分配中的公平性以及个人、公司和国家之间的商业和政治利益冲突相关的问题。总之，建议设立一个机构，作为代表个人的副受托人，以调解知情同意的复杂性质。建议专注于分散的数字技术，以促进数据的利用，防止不必要的数据传播造成的歧视。
