CorrespondenceNo expectation to share incidental findings in genomic research
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Cited by (17)
Return of genomic results does not motivate intent to participate in research for all: Perspectives across 22 countries
2022, Genetics in MedicineCitation Excerpt :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
2019, American Journal of Human GeneticsCitation Excerpt :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.
Physicians’ perspectives on receiving unsolicited genomic results
2019, Genetics in MedicineDevelopmental disorders: Deciphering exomes on a grand scale
2015, The LancetGenetic diagnosis of developmental disorders in the DDD study: A scalable analysis of genome-wide research data
2015, The LancetCitation Excerpt :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.
Rapid genome sequencing for pediatrics
2022, Human Mutation