ReviewClinical genetics2013
Funding considerations for the disclosure of genetic incidental findings in biobank research.
Review in Clinical genetics, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 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
14 citing papers in PubMed.
- Return of results is important to heterogeneous research participants: A single-site survey.Journal of clinical and translational science · 2026Article
- Public Attitude towards Biobanking: An Italian University Survey.International journal of environmental research and public health · 2022Article
- Biobanking and risk assessment: a comprehensive typology of risks for an adaptive risk governance.Life sciences, society and policy · 2021Review
- Legal and Ethical Considerations for the Design and Use of Web Portals for Researchers, Clinicians, and Patients: Scoping Literature Review.Journal of medical Internet research · 2021Article
- Perceptions of best practices for return of results in an international survey of psychiatric genetics researchers.European journal of human genetics : EJHG · 2021Article
- Return of genetic and genomic research findings: experience of a pediatric biorepository.BMC medical genomics · 2019Article
- Legal issues in governing genetic biobanks: the Italian framework as a case study for the implications for citizen's health through public-private initiatives.Journal of community genetics · 2018Article
- Research Participants' Preferences for Hypothetical Secondary Results from Genomic Research.Journal of genetic counseling · 2017Article
- Returning Results: Let's Be Honest!Genetic testing and molecular biomarkers · 2017Article
- Has the biobank bubble burst? Withstanding the challenges for sustainable biobanking in the digital era.BMC medical ethics · 2016Review
- Views of Cohort Study Participants about Returning Research Results in the Context of Precision Medicine.Public health genomics · 2016Article
- 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
- Returning a Research Participant's Genomic Results to Relatives: Perspectives from Managers of Two Distinct Research Biobanks.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2015Article
- Biobanks and personalized medicine.Clinical genetics · 2014Review
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
No grant is acknowledged in the PubMed record.
Abstract
The use of biobanks in biomedical research has grown considerably in recent years. As a result of the increasing analysis of tissue samples stored in biobanks, there has also been an increase in the probability of discovering-in addition to the research target-incidental findings (IF). We identified 23 laws, policies and guidelines from international, regional and national organizations that provide guidance or identify the need for the disclosure of IF to research participants. We analyzed these instruments to determine their contemplation of the funding considerations for the disclosure of IF, examining their guidance for who discloses and the extent of researcher responsibilities. We found that the available normative documents provide little guidance to researchers and biobanks for how they should address cost and funding concerns associated with IF disclosure. It is therefore essential that the research and policy communities think through the financial implications of imposing an ethical responsibility to disclose IF. Concerted efforts should be made by policymakers, ethicists, researchers, clinicians and research institutions to develop detailed funding recommendations, potentially universal in application, to aid in the disclosure of IF, and we provide recommendations on steps that can be taken to ensure full consideration of these issues.
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.