At the end of 2014, Ellen Otten and co-authors published a paper on 'Is there a duty to recontact in light of new genetic technologies? A systematic review of the literature.'
Otten E, Plantinga M, Birnie E, Verkerk MA, Lucassen AM, Adelita V, Ranchor AV, Van Langen IM. Genet Med, 2014 Dec 11. doi: 10.1038/gim.2014.173. Published online ahead of print. Abstract
The American Journal of Medical Genetics has recently published a comment on their work.
"A paper by researchers from the Netherlands and the United Kingdom recently published in Genetics in Medicine says the explosion in new genetic information warrants closer examination of the ethical, legal, and social issues involved in telling former patients about VUS results (Otten et al., 2014).
“Our research shows that recontacting is considered desirable by both professionals and patients, but experience with it is limited,” says Ellen Otten, MD, a PhD candidate in the Genetics Department at the University Medical Center Groningen in the Netherlands.
Dr. Otten’s paper concluded that informing former patients about relevant new findings is considered unfeasible in most cases, but she urges the genetics community to reach a consensus about which situations merit recontacting."
See full comment by Deborah Levenson in the American Journal of Medical Genetics (Part A) Research Update, April 2015, vol 167, issue 4
The AJMG comment was also picked up by the American CDC's weekly update featuring the emerging role of human genomics, testing and interventions in a wide variety of noncommunicable diseases across the life span. Vol 34, Number 13, April 2-9, 2015.
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