ArticleJournal of genetic counseling2007
Disclosure of genetics research results after the death of the patient participant: a qualitative study of the impact on relatives.
Article in Journal of genetic counseling, 2007. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 25 papers, 4 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
25 citing papers in PubMed, 4 syntheses or guidelines pooled it, 40 citations in OpenAlex.
- Return of individual research results from genomic research: A systematic review of stakeholder perspectives.PloS one · 2021Pooled it
- Stakeholders' perspectives on the post-mortem use of genetic and health-related data for research: a systematic review.European journal of human genetics : EJHG · 2020Pooled it
- Recommendations for the return of research results to study participants and guardians: a report from the Children's Oncology Group.Journal of clinical oncology : official journal of the American Society of Clinical Oncology · 2012Guideline
- Men in the women's world of hereditary breast and ovarian cancer--a systematic review.Familial cancer · 2009Pooled it
- Participants' preference for type of leaflet used to feed back the results of a randomised trial: a survey.Trials · 2010Trial
- DNA sequencing in oncology: a focus group study on a duty to recontact.Future science OA · 2024Article
- "I would like to discuss it further with an expert": a focus group study of Finnish adults' perspectives on genetic secondary findings.Journal of community genetics · 2018Article
- Germline mutations in BRCA1 and BRCA2 incidentally revealed in a biobank research study: experiences from re-contacting mutation carriers and relatives.Journal of community genetics · 2018Article
- Influences of race and breast density on related cognitive and emotion outcomes before mandated breast density notification.Social science & medicine (1982) · 2016Article
- Unsolicited findings of next-generation sequencing for tumor analysis within a Dutch consortium: clinical daily practice reconsidered.European journal of human genetics : EJHG · 2016Article
- Family decision maker perspectives on the return of genetic results in biobanking research.Genetics in medicine : official journal of the American College of Medical Genetics · 2016Article
- Timing and context: important considerations in the return of genetic results to research participants.Journal of community genetics · 2016Article
- Support Seeking or Familial Obligation: An Investigation of Motives for Disclosing Genetic Test Results.Health communication · 2016Article
- An update to returning genetic research results to individuals: perspectives of the industry pharmacogenomics working group.Bioethics · 2015Article
- Pediatric Cancer Genetics Research and an Evolving Preventive Ethics Approach for Return of Results after Death of the Subject.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2015Article
- Return of Genetic Research Results to Participants and Families: IRB Perspectives and Roles.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2015Article
- Negative autopsy and sudden cardiac death.International journal of legal medicine · 2014Review
- Return of genomic results to research participants: the floor, the ceiling, and the choices in between.American journal of human genetics · 2014Article
- Return of individual research results and incidental findings: facing the challenges of translational science.Annual review of genomics and human genetics · 2013Review
- Measuring the degree of closeness to the cancer experience: development and initial validation of the CONNection to the Experience of Cancer Scale (CONNECS).Patient education and counseling · 2012Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors at 3 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
When a gene mutation is identified in a research study following the death of the study participant, it is not clear whether such information should be made available to relatives. We report here an evaluation of the impact on relatives of being informed of study results that detected pathogenic BRCA2 mutations in a male relative, now deceased, who had early onset (under the age of 55) prostate cancer. The breast and ovarian cancer risk was unknown to the living relatives. Qualitative analysis of interviews with thirteen relatives indicated that those who had a higher risk perception, resulting from an awareness of cancer family history or experiential knowledge of cancer in their family, tended to adjust more easily to the results. All participants believed that genetics research results of clinical significance should be fed back to relatives. Those who were fully aware of the BRCA2 results and implications for themselves felt they had benefited from the information, irrespective of whether or not they had elected for genetic testing, because of the consequent availability of surveillance programs. Initial anxiety upon learning about the BRCA2 result was alleviated by genetic counselling. Factors influencing those who have not engaged with the information included scepticism related to the relative who attempted to inform them, young age and fear of cancer. Those who had not sought genetic counselling did not attempt further dissemination, and some were not undergoing regular screening. Implications for informed consent in genetics research programs, and the requirement for genetic counselling when research results are disclosed, are discussed.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.