ArticleCancer epidemiology, biomarkers & prevention : a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology2011
Disclosing individual CDKN2A research results to melanoma survivors: interest, impact, and demands on researchers.
Article in Cancer epidemiology, biomarkers & prevention : a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology, 2011. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 33 papers, 2 of them syntheses that pooled it.
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Who cites it
33 citing papers in PubMed, 2 syntheses or guidelines pooled it, 42 citations in OpenAlex.
- Return of individual research results from genomic research: A systematic review of stakeholder perspectives.PloS one · 2021Pooled it
- Rare presentations of primary melanoma and special populations: a systematic review.American journal of clinical oncology · 2014Pooled it
- An electronic review of clinical outcomes after return of actionable genetic research results from a health system research biobank.European journal of medical genetics · 2025Trial
- Melanoma genetic testing, counseling, and adherence to skin cancer prevention and detection behaviors.Cancer epidemiology, biomarkers & prevention : a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology · 2013Trial
- A randomized study of digital versus genetic counselor return of actionable genetic research results to biobank participants (RESPECT3 study).BMC medical ethics · 2026Article
- Return of results is important to heterogeneous research participants: A single-site survey.Journal of clinical and translational science · 2026Article
- Views on genomic research result delivery methods and informed consent: a review.Personalized medicine · 2021Review
- Disclosure of clinically actionable genetic variants to thoracic aortic dissection biobank participants.BMC medical genomics · 2021Article
- Assessing the implications of positive genomic screening results.Personalized medicine · 2020Article
- Pancreatic cancer and melanoma related perceptions and behaviors following disclosure of CDKN2A variant status as a research result.Genetics in medicine : official journal of the American College of Medical Genetics · 2019Article
- Multicenter Prospective Cohort Study of the Diagnostic Yield and Patient Experience of Multiplex Gene Panel Testing For Hereditary Cancer Risk.JCO precision oncology · 2019Article
- Development and Evaluation of a Telephone Communication Protocol for the Delivery of Personalized Melanoma Genomic Risk to the General Population.Journal of genetic counseling · 2018Article
- Psychological Impact of Learning CDKN2A Variant Status as a Genetic Research Result.Public health genomics · 2018Article
- Returning Individual Genetic Research Results to Research Participants: Uptake and Outcomes Among Patients With Breast Cancer.JCO precision oncology · 2018Article
- Preferences for the Return of Individual Results From Research on Pediatric Biobank Samples.Journal of empirical research on human research ethics : JERHRE · 2017Article
- How, who, and when: preferences for delivery of genome sequencing results among women diagnosed with breast cancer at a young age.Molecular genetics & genomic medicine · 2016Article
- Feedback of Individual Genetic Results to Research Participants: Is It Feasible in Europe?Biopreservation and biobanking · 2016Article
- Genetic Testing Awareness and Attitudes among Latinos: Exploring Shared Perceptions and Gender-Based Differences.Public health genomics · 2016Article
- Timing and context: important considerations in the return of genetic results to research participants.Journal of community genetics · 2016Article
- Views of Cohort Study Participants about Returning Research Results in the Context of Precision Medicine.Public health genomics · 2016Article
Corrections and comments
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Authors and funding
7 authors at 2 institutions in 1 country.
Funding
Abstract
backgroundWhether to return individual research results from cancer genetics studies is widely debated, but little is known about how participants respond to results disclosure or about its time and cost burdens on investigators.
methodsWe recontacted participants at one site of a multicenter genetic epidemiologic study regarding their CDKN2A gene test results and implications for melanoma risk. Interested participants were disclosed their results by telephone and followed for 3 months.
resultsAmong 39 patients approached, 27 were successfully contacted, and 19 (70% uptake) sought results, including three with mutations. Prior to disclosure, participants endorsed numerous benefits of receiving results (mean=7.7 of 9 posed), including gaining information relevant to their children's disease risk. Mean psychological well-being scores did not change from baseline, and no decreases to melanoma prevention behaviors were noted. Fifty-nine percent of participants reported that disclosure made participation in future research more likely. Preparation for disclosure required 40 minutes and $611 per recontact attempt. An additional 78 minutes and $68 was needed to disclose results.
conclusionCancer epidemiology research participants who received their individual genetic research results showed no evidence of psychological harm or false reassurance from disclosure and expressed strong trust in the accuracy of results. Burdens to our investigators were high, but protocols may differ in their demands and disclosure may increase participants' willingness to enroll in future studies. IMPACT: Providing individual study results to cancer genetics research participants poses potential challenges for investigators, but many participants desire and respond positively to this information.
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