Trial reportMolecular genetics & genomic medicine2019
Research participants' experiences with return of genetic research results and preferences for web-based alternatives.
Trial report in Molecular genetics & genomic medicine, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 21 papers, 1 of them a synthesis 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
21 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Strategies to facilitate the report-back of research results: a systematic review of methods and evaluations.Environmental health : a global access science source · 2026Pooled it
- Research participants' experiences with return of genetic research results and preferences for web-based alternatives.Molecular genetics & genomic medicine · 2019Trial
- Supporting decisions about genomic newborn screening at scale in the digital age: the BabyScreen+ study.NPJ genomic medicine · 2026Article
- Nephrologists' Views on a Workflow for Returning Genetic Results to Research Participants.Kidney international reports · 2024Article
- Perceptions of patient-reported outcome data access and sharing among patients with heart failure: ethical implications for research.European journal of cardiovascular nursing · 2024Article
- Parents' views of benefits and limitations of receiving genetic diagnoses for their offspring.Child: care, health and development · 2024Article
- Uptake of Genetic Research Results and Patient-Reported Outcomes With Return of Results Incorporating Web-Based Predisclosure Education.Journal of clinical oncology : official journal of the American Society of Clinical Oncology · 2023Article
- Acceptability and Usability of the Family Gene Toolkit for Swiss and Korean Families HarboringCancers · 2023Article
- User and Usability Testing of a Web-Based Genetics Education Tool for Parkinson Disease: Mixed Methods Study.JMIR bioinformatics and biotechnology · 2023Article
- Returning study results to research participants: Data access, format, and sharing preferences.International journal of medical informatics · 2023Article
- Women's thoughts on receiving and sharing genetic information: Considerations for genetic counseling.Journal of genetic counseling · 2022Article
- Developing video education materials for the return of genomic test results to parents and adolescents.PEC innovation · 2022Article
- Perspectives and experiences of researchers regarding feedback of incidental genomic research findings: A qualitative study.PloS one · 2022Article
- Perspectives and ethical considerations for return of genetics and genomics research results: a qualitative study of genomics researchers in Uganda.BMC medical ethics · 2021Article
- Using a Tailored Digital Health Intervention for Family Communication and Cascade Genetic Testing in Swiss and Korean Families With Hereditary Breast and Ovarian Cancer: Protocol for the DIALOGUE Study.JMIR research protocols · 2021Article
- Views on genomic research result delivery methods and informed consent: a review.Personalized medicine · 2021Review
- Researchers' perspectives on return of individual genetics results to research participants: a qualitative study.Global bioethics = Problemi di bioetica · 2021Article
- Review
- Online BRCA1/2 screening in the Australian Jewish community: a qualitative study.Journal of community genetics · 2020Article
- Implementation considerations for offering personal genomic risk information to the public: a qualitative study.BMC public health · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
16 authors.
Funding
Abstract
backgroundWhile there is increasing interest in sharing genetic research results with participants, how best to communicate the risks, benefits and limitations of research results remains unclear.
methodsParticipants who received genetic research results answered open and closed-ended questions about their experiences receiving results and interest in and advantages and disadvantages of a web-based alternative to genetic counseling.
results107 BRCA1/2 negative women with a personal or family history of breast cancer consented to receive genetic research results and 82% completed survey items about their experience. Most participants reported there was nothing they disliked (74%) or would change (85%) about their predisclosure or disclosure session (78% and 89%). They most frequently reported liking the genetic counselor and learning new information. Only 24% and 26% would not be willing to complete predisclosure counseling or disclosure of results by a web-based alternative, respectively. The most frequently reported advantages included convenience and reduced time. Disadvantages included not being able to ask questions, the risk of misunderstanding and the impersonal nature of the encounter.
conclusionMost participants receiving genetic research results report high satisfaction with telephone genetic counseling, but some may be willing to consider self-directed web alternatives for both predisclosure genetic education and return of results.
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.