Downsizing genomic medicine: approaching the ethical complexity of whole-genome sequencing by starting small

Genet Med. 2011 Mar;13(3):191-4. doi: 10.1097/GIM.0b013e31820f603f.


As we look to a time when whole-genome sequencing is integrated into patient care, it is possible to anticipate a number of ethical challenges that will need to be addressed. The most intractable of these concern informed consent and the responsible management of very large amounts of genetic information. Given the range of possible findings, it remains unclear to what extent it will be possible to obtain meaningful patient consent to genomic testing. Equally unclear is how clinicians will disseminate the enormous volume of genetic information produced by whole-genome sequencing. Toward developing practical strategies for managing these ethical challenges, we propose a research agenda that approaches multiplexed forms of clinical genetic testing as natural laboratories in which to develop best practices for managing the ethical complexities of genomic medicine.

Publication types

  • Research Support, N.I.H., Extramural

MeSH terms

  • Confidentiality
  • Genetic Testing / ethics
  • Genetics, Medical / ethics*
  • Genetics, Medical / standards*
  • Genome, Human / genetics
  • Humans
  • Informed Consent
  • Sequence Analysis / ethics