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.

Keywords:

• accountability
• genomics
• Havasupai
• inconvenient truth
• science

ACKNOWLEDGMENTS

We wish to thank David Gurwitz, Tel-Aviv University, and Lee Bitsói and John Aach, Harvard Medical School, for discussion of earlier versions of this article. The views expressed in this article are solely those of the authors.

Notes

1. The genomic sciences include genetics. For reasons of readability, we will further use “genomics” in this text and will use “genetics” only if we specifically refer to this narrower field.

2. On December 3, 2010, a settlement was reached with a family receiving $475,000 in the case of Doe et al. v. Mount Vernon City School District Board of Education et al.