Genes (Basel). 2014 Jan 22;5(1):1-12. doi: 10.3390/genes5010001.

Revisiting respect for persons in genomic research.

Mathews DJ1, Jamal L2.

Author information

• 1Johns Hopkins Berman Institute of Bioethics, 1809 Ashland Avenue, Baltimore, MD 21205, USA. dmathews@jhu.edu.
• 2Department of Health Policy and Management, Johns Hopkins Bloomberg School of Health, 615 North Wolfe St., Baltimore, MD 21205, USA. ljamal@jhsph.edu.

Abstract

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.