ArticleJournal of empirical research on human research ethics : JERHRE2017
Preferences for the Return of Individual Results From Research on Pediatric Biobank Samples.
Article in Journal of empirical research on human research ethics : JERHRE, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 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
15 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Return of individual research results from genomic research: A systematic review of stakeholder perspectives.PloS one · 2021Pooled it
- Adolescent and Young Adult Perspectives on Receiving Pathogenic or Likely Pathogenic Results in a Prospective Genomic Screening Clinical Trial.Public health genomics · 2026Article
- Adolescents' and Parents' Perspectives on a Novel Decision-Making Process for Return of Results in Genomic Research.Journal of empirical research on human research ethics : JERHRE · 2023Article
- Parents' decision-making regarding whether to receive adult-onset only genetic findings for their children: Findings from the BabySeq Project.Genetics in medicine : official journal of the American College of Medical Genetics · 2023Article
- Returning study results to research participants: Data access, format, and sharing preferences.International journal of medical informatics · 2023Article
- Parental Preferences about Policy Options Regarding Disclosure of Incidental Genetic Findings in Newborn Screening: Using Videos and the Internet to Educate and Obtain Input.International journal of neonatal screening · 2022Article
- Paediatric biobanking for health: The ethical, legal, and societal landscape.Frontiers in public health · 2022Review
- Sharing and Safeguarding Pediatric Data.Frontiers in genetics · 2022Article
- Participants' Preferences and Reasons for Wanting Feedback of Individual Genetic Research Results From an HIV-TB Genomic Study: A Case Study From Botswana.Journal of empirical research on human research ethics : JERHRE · 2021Article
- Views on genomic research result delivery methods and informed consent: a review.Personalized medicine · 2021Review
- Reflections on dynamic consent in biomedical research: the story so far.European journal of human genetics : EJHG · 2021Article
- Factors Influencing Participation in Biospecimen Research among Parents of Youth with Mental Health Conditions.Public health genomics · 2020Article
- Adolescent and Parental Attitudes About Return of Genomic Research Results: Focus Group Findings Regarding Decisional Preferences.Journal of empirical research on human research ethics : JERHRE · 2018Article
- Returning Individual Genetic Research Results to Research Participants: Uptake and Outcomes Among Patients With Breast Cancer.JCO precision oncology · 2018Article
- A Comparison of Whole Genome Sequencing to Multigene Panel Testing in Hypertrophic Cardiomyopathy Patients.Circulation. Cardiovascular genetics · 2017Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
9 authors.
Funding
Abstract
Discussions about disclosing individual genetic research results include calls to consider participants' preferences. In this study, parents of Boston Children's Hospital patients set preferences for disclosure based on disease preventability and severity, and could exclude mental health, developmental, childhood degenerative, and adult-onset disorders. Participants reviewed hypothetical reports and reset preferences, if desired. Among 661 participants who initially wanted all results (64%), 1% reset preferences. Among 336 participants who initially excluded at least one category (36%), 38% reset preferences. Participants who reset preferences added 0.9 categories, on average; and their mean satisfaction on 0 to 10 scales increased from 4.7 to 7.2 ( p < .001). Only 2% reduced the number of categories they wanted disclosed. Findings demonstrate the benefits of providing examples of preference options and the tendency of participants to want results disclosed. Findings also suggest that preference-setting models that do not provide specific examples of results could underestimate participants' desires for information.
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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.