Empirical research on the ethics of genomic research

Am J Med Genet A. 2013 Aug;161A(8):2099-101. doi: 10.1002/ajmg.a.36067. Epub 2013 Jun 27.


There is no universally accepted definition of what an incidental finding is [Wolf et al., 2008] and broadly speaking this could include variants of known and unknown clinical significance, variants linked to highly penetrant, serious, life-threatening conditions, non-paternity or ancestry data. For the purposes of our study, we have adopted a pragmatic distinction between ‘pertinent’ and ‘incidental’ findings as set out in this text. Whilst in the US definitions of incidental findings are becoming accepted in practice [Green et al., 2013] it is still not known how and whether these also apply elsewhere around the world.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Empirical Research*
  • Ethical Theory*
  • Genetic Research / ethics*
  • Humans
  • Research Design*