ArticleMolecular genetics & genomic medicine2018
Responsibility, identity, and genomic sequencing: A comparison of published recommendations and patient perspectives on accepting or declining incidental findings.
Article in Molecular genetics & genomic medicine, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers.
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Who cites it
14 citing papers in PubMed.
- Use of Prenatal Exome Sequencing: Opinion Statement of the French Federation of Human Genetics Working Group.Prenatal diagnosis · 2025Review
- Research biobank participants attitudes towards genetic exceptionalism and health record confidentiality.Journal of community genetics · 2024Article
- GBA/GBN-position on the feedback of incidental findings in biobank-based research: consensus-based workflow for hospital-based biobanks.European journal of human genetics : EJHG · 2023Article
- Article
- Public interest in unexpected genomic findings: a survey study identifying aspects of sequencing attitudes that influence preferences.Journal of community genetics · 2022Article
- A qualitative study among patients with an inherited retinal disease on the meaning of genomic unsolicited findings.Scientific reports · 2021Article
- Incidental findings in forensics: are we sure that it is a question easy to deal with?International journal of legal medicine · 2021Article
- Challenges for ethics committees in biomedical research governance: illustrations from China and Australia.Journal of medical ethics and history of medicine · 2021Article
- Attitudes among South African university staff and students towards disclosing secondary genetic findings.Journal of community genetics · 2021Article
- Experiences and lessons learned by genetic counselors in returning secondary genetic findings to patients.Journal of genetic counseling · 2020Article
- Participant choices for return of genomic results in the eMERGE Network.Genetics in medicine : official journal of the American College of Medical Genetics · 2020Article
- New Frontiers and Old Challenges: How to Manage Incidental Findings When Forensic Diagnosis Goes Beyond.Diagnostics (Basel, Switzerland) · 2020Article
- Ethical values supporting the disclosure of incidental and secondary findings in clinical genomic testing: a qualitative study.BMC medical ethics · 2020Article
- Responsibility, identity, and genomic sequencing: A comparison of published recommendations and patient perspectives on accepting or declining incidental findings.Molecular genetics & genomic medicine · 2018Article
Corrections and comments
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Authors and funding
2 authors.
Funding
Abstract
backgroundThe use of genomic sequencing techniques is increasingly being incorporated into mainstream health care. However, there is a lack of agreement on how "incidental findings" (IFs) should be managed and a dearth of research on patient perspectives.
methodsIn-depth qualitative interviews were carried out with 31 patients undergoing genomic sequencing at a regional genetics service in England. Interviews explored decisions around IFs and were comparatively analyzed with published recommendations from the literature.
resultsThirteen participants opted to receive all IFs from their sequence, 12 accepted some and rejected others, while six participants refused all IFs. The key areas from the literature, (a) genotype/phenotype correlation, (b) seriousness of the condition, and (c) implications for biological relatives, were all significant; however, patients drew on a broader range of social and cultural information to make their decisions.
conclusionThis study highlights the range of costs and benefits for patients of receiving IFs from a genomic sequence. While largely positive views toward the dissemination of genomic data were reported, ambivalence surrounding genetic responsibility and its associated behaviors (e.g., duty to inform relatives) was reported by both IF decliners and accepters, suggesting a need to further explore patient perspectives on this highly complex topic area.
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