Johns Hopkins Berman Institute of Bioethics, 1809 Ashland Avenue, Baltimore, MD 21205, USA.
Department of Health Policy and Management, Johns Hopkins Bloomberg School of Health, 615 North Wolfe St., Baltimore, MD 21205, USA.
Genes (Basel). 2014 Jan 22;5(1):1-12. doi: 10.3390/genes5010001.
The risks and benefits of research using large databases of personal information are evolving in an era of ubiquitous, internet-based data exchange. In addition, information technology has facilitated a shift in the relationship between individuals and their personal data, enabling increased individual control over how (and how much) personal data are used in research, and by whom. This shift in control has created new opportunities to engage members of the public as partners in the research enterprise on more equal and transparent terms. Here, we consider how some of the technological advances driving and paralleling developments in genomics can also be used to supplement the practice of informed consent with other strategies to ensure that the research process as a whole honors the notion of respect for persons upon which human research subjects protections are premised. Further, we suggest that technological advances can help the research enterprise achieve a more thoroughgoing respect for persons than was possible when current policies governing human subject research were developed. Questions remain about the best way to revise policy to accommodate these changes.
在互联网数据交换无处不在的时代，利用个人信息大型数据库进行研究的风险和益处正在不断发展。此外，信息技术促进了个人与其个人数据之间关系的转变，使个人能够更好地控制其个人数据在研究中的使用方式（以及使用量），以及由谁使用。这种控制方式的转变为以更加平等和透明的条件让公众成员作为研究企业的合作伙伴创造了新的机会。在这里，我们考虑了推动和并行发展基因组学的一些技术进步如何也可以与其他策略一起用于补充知情同意的实践，以确保整个研究过程尊重人类研究对象保护所基于的尊重个人的概念。此外，我们认为，技术进步可以帮助研究企业比制定当前人类受试者研究政策时更彻底地尊重个人。关于如何修改政策以适应这些变化，仍存在一些问题。
