Editorial: Genetic and Genomic Research—Changing Patterns of Accountability

Abstract

Debates about genomic science have raised questions about the implications for ethics and accountability. Accountability has external and internal aspects. Whereas ethical review, including attention to appropriate consent procedures, has been central to 'giving an account' externally, there are also issues internal to the practice of science itself. The pursuit of truth is central to the scientific endeavour, but truths can sometimes be 'inconvenient', leading to complex questions of accountability that go beyond the issues of consent. This is illustrated by the case of the Havasupai.

Systems Biology Through the Concept of Emergence

“…Finally, the transition from the Human Genome Project (HGP) to the Personal Genome Project (PGP) holds promise for the future (Church, 2005), provided that the corresponding ethical issues will be satisfactorily dealt with (e.g. Lunshof & Ball, 2013;Lunshof & Chadwick, 2011).…”

Translational Science, DNA Commercialization, and Informed Consent: The Need for Specific Terminology, Insights from a Review of H3Africa Projects

“…Hence, it may be associated with the concept of exploitation . There are examples of situations where this has occurred historically [7, 8]. At the other end of the spectrum, commercialization may be a necessary means toward a public good.…”

Implementing Qualitative Data Management Plans to Ensure Ethical Standards in Multi-Partner Centers

“…Our field sites are located in the Southwest United States and in a geographic region where researchers must be especially cognizant of a history of ethical violations and risks introduced by researchers of the past (Drabiak-Syed, 2010; Mello & Wolf, 2010; Sharp & Foster, 2002; Watkins, 2001). Ethical misconduct is still fresh in the memories of many people who have been harmed by researchers who undermined the principle of informed consent, and other basic tenets of human subjects research ethics, by using tissue samples for research on schizophrenia, incest, and migration studies without participant permission (Garrison & Cho, 2013; Lunshof & Chadwick, 2011; Mello & Wolf, 2010; Santos, 2008). Questions of data protection, trust, and community participation span far beyond the type of data researchers collect (Pacheco et al, 2013).…”