Abstract

Recent advances in high-throughput genomic technologies are showing concrete results in the form of an increasing number of genome-wide association studies and in the publication of comprehensive individual genome–phenome data sets. As a consequence of this flood of information the established concepts of research ethics are stretched to their limits, and issues of privacy, confidentiality and consent for research are being re-examined. Here, we show the feasibility of the co-development of scientific innovation and ethics, using the open-consent framework that was implemented in the Personal Genome Project as an example.

Author affiliations

1. Jeantine E. Lunshof is at the Department of Molecular Cell Physiology, c/o room M236, Faculty of Earth and Life Sciences, VU University Amsterdam, De Boelelaan 1085, 1081 HV Amsterdam, The Netherlands.
2. Ruth Chadwick is at Cardiff Law School, Cardiff University, Law Building, Museum Avenue, Cardiff, CF10 3AX, Wales, UK.
3. Daniel B. Vorhaus is at Robinson, Bradshaw & Hinson P.A., 101 North Tryon Street, Suite 1900, Charlotte, North Carolina 28246-1900, USA.
4. George M. Church is at the Department of Genetics, Harvard Medical School, New Research Building, Room 238, 77 Avenue Louis Pasteur, Boston, Massachusetts 02115, USA.

Correspondence to: Jeantine E. Lunshof¹ Email: jeantine.lunshof@falw.vu.nl