ArticleJournal of empirical research on human research ethics : JERHRE2010
Returning individual research results: development of a cancer genetics education and risk communication protocol.
Article in Journal of empirical research on human research ethics : JERHRE, 2010. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 20 papers.
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
20 citing papers in PubMed.
- 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
- A randomized study of digital versus genetic counselor return of actionable genetic research results to biobank participants (RESPECT3 study).BMC medical ethics · 2026Article
- Returning study results to research participants: Data access, format, and sharing preferences.International journal of medical informatics · 2023Article
- The Implementation Chasm Hindering Genome-informed Health Care.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2020Article
- Preferences for learning different types of genome sequencing results among young breast cancer patients: Role of psychological and clinical factors.Translational behavioral medicine · 2018Article
- Precision medicine in pediatric oncology: Lessons learned and next steps.Pediatric blood & cancer · 2017Review
- Public preferences for communicating personal genomic risk information: a focus group study.Health expectations : an international journal of public participation in health care and health policy · 2016Article
- 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
- Preferences for return of incidental findings from genome sequencing among women diagnosed with breast cancer at a young age.Clinical genetics · 2016Article
- Adolescent perspectives on the return of individual results in genomic addiction research.Psychiatric genetics · 2015Article
- Connecting patients, researchers and clinical genetics services: the experiences of participants in the Australian Ovarian Cancer Study (AOCS).European journal of human genetics : EJHG · 2015Article
- Article
- Cancer screening and genetics: a tale of two paradigms.Cancer epidemiology, biomarkers & prevention : a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology · 2014Article
- Biobank participants' preferences for disclosure of genetic research results: perspectives from the OurGenes, OurHealth, OurCommunity project.Mayo Clinic proceedings · 2014Article
- Communication of genetic test results to family and health-care providers following disclosure of research results.Genetics in medicine : official journal of the American College of Medical Genetics · 2014Article
- How do researchers manage genetic results in practice? The experience of the multinational Colon Cancer Family Registry.Journal of community genetics · 2014Article
- Reporting actionable research results: shared secrets can save lives.Science translational medicine · 2012Article
- Individual genetic and genomic research results and the tradition of informed consent: exploring US review board guidance.Journal of medical ethics · 2012Article
- Managing incidental findings and research results in genomic research involving biobanks and archived data sets.Genetics in medicine : official journal of the American College of Medical Genetics · 2012Article
- Disclosing individual CDKN2A research results to melanoma survivors: interest, impact, and demands on researchers.Cancer epidemiology, biomarkers & prevention : a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology · 2011Article
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.
Funding
Abstract
The obligations of researchers to disclose clinically and/or personally significant individual research results are highly debated, but few empirical studies have addressed this topic. We describe the development of a protocol for returning research results to participants at one site of a multicenter study of the genetic epidemiology of melanoma. Protocol development involved numerous challenges: (1) deciding whether genotype results merited disclosure; (2) achieving an appropriate format for communicating results; (3) developing education materials; (4) deciding whether to retest samples for additional laboratory validation; (5) identifying and notifying selected participants; and (6) assessing the impact of disclosure. Our experience suggests potential obstacles depending on researcher resources and the design of the parent study, but offers a process by which researchers can responsibly return individual study results and evaluate the impact of disclosure.
Indexed as
Identifiers
What OpenQuestion holds
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.