No expectation to share incidental findings in genomic research

A summary of study results after having asked research participants whether they expected researchers to deliberately do an opportunistic screen to look for incidental findings of particular health relevance.
4th April 2015

"Genomic sequencing studies can answer questions about the genetic contribution to complex medical disorders such as developmental disorders. Although findings relating to the disorder of interest will be communicated to patients along with appropriate counselling, there is pressure on researchers to return secondary or incidental findings (ie, additional health-related data unrelated to the research question). But few studies have actually asked relevant stakeholders what their expectations are of researchers..."


Middleton A, Parker M, Bragin E… Morley K, et al on behalf of the DDD study (2015) No expectation to share incidental findings in genomic research. The Lancet, vol. 385, issue 9975, pp 1289-1290, April