Elsevier

The Lancet

Volume 385, Issue 9975, 4–10 April 2015, Pages 1289-1290
The Lancet

Correspondence
No expectation to share incidental findings in genomic research

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  • Return of genomic results does not motivate intent to participate in research for all: Perspectives across 22 countries

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    Previous research suggests significant public interest in receiving research results, but interest in the possibility of receiving results does not equate to an expectation that they will be returned. The work of Middleton et al28 on the return of incidental findings, eg, emphasizes on an important nuance between public interest in receiving findings, which is high, and public expectations related to researchers’ responsibilities to look for such findings, which are low. Similarly, recent work around public perceptions of the RoR in population research in Germany suggests that although participants may value the RoR, they do not necessarily require it.29

  • The Responsibility to Recontact Research Participants after Reinterpretation of Genetic and Genomic Research Results

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    Recontact for reinterpretations from B or LB to VUS should be made on a case-by-case basis when there is anticipated benefit. Researchers have no responsibility to hunt through or scan genetic and genomic data or literature for changes in variant interpretation or to identify new genetic causes of disease, if such was not part of the original study.1,78,79 To do so would be outside the scope of what a researcher owes a study participant and might detract from the primary goals of research.

  • Genetic diagnosis of developmental disorders in the DDD study: A scalable analysis of genome-wide research data

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    The judgment not to feed back incidental findings was REC-approved, and the protocol and patient information sheets clearly state that “incidental findings will not be reported back in the DDD study”. Nonetheless, we developed a parallel research study to investigate attitudes towards feeding back a broader range of genomic results to research participants.16,17 We outline a process to identify and report likely causal variants (pertinent findings) in individual patients, and summarise the results to date.

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