From genetic privacy to open consent.
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.
Lunshof
Jeantine E
JE
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. jeantine.lunshof@falw.vu.nl
Chadwick
Ruth
R
Vorhaus
Daniel B
DB
Church
George M
GM
D001675:Bioethics / Q000639:trends; D030561:Databases, Nucleic Acid / Q000941:ethics* / Q000639:trends; D015894:Genome, Human; D023281:Genomics / Q000941:ethics* / Q000639:trends; D006801:Humans