From genetic privacy to open consent

Nat Rev Genet. 2008 May;9(5):406-11. doi: 10.1038/nrg2360.

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.

Publication types

  • Research Support, Non-U.S. Gov't
  • Review

MeSH terms

  • Bioethics* / trends
  • Databases, Nucleic Acid / ethics*
  • Databases, Nucleic Acid / trends
  • Genome, Human*
  • Genomics / ethics*
  • Genomics / trends
  • Humans