ArticleThe American journal of bioethics : AJOB2008
Patients' views on identifiability of samples and informed consent for genetic research.
Article in The American journal of bioethics : AJOB, 2008. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 55 papers, 4 of them syntheses 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
55 citing papers in PubMed, 4 syntheses or guidelines pooled it, 107 citations in OpenAlex.
- The role of race and ethnicity in views toward and participation in genetic studies and precision medicine research in the United States: A systematic review of qualitative and quantitative studies.Molecular genetics & genomic medicine · 2020Pooled it
- A systematic literature review of individuals' perspectives on privacy and genetic information in the United States.PloS one · 2018Pooled it
- Stakeholders' perspectives on biobank-based genomic research: systematic review of the literature.European journal of human genetics : EJHG · 2015Pooled it
- Strategies to work with HLA data in human populations for histocompatibility, clinical transplantation, epidemiology and population genetics: HLA-NET methodological recommendations.International journal of immunogenetics · 2012Guideline
- To share or not to share: a randomized trial of consent for data sharing in genome research.Genetics in medicine : official journal of the American College of Medical Genetics · 2011Trial
- The Impact of Communicating Uncertainty on Public Responses to Precision Medicine Research.Annals of behavioral medicine : a publication of the Society of Behavioral Medicine · 2021Article
- Article
- Preferences for Accessing Electronic Health Records for Research Purposes: Views of Parents Who Have a Child With a Known or Suspected Genetic Condition.Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research · 2020Article
- Parent Perspectives Towards Genetic and Epigenetic Testing for Autism Spectrum Disorder.Journal of autism and developmental disorders · 2020Article
- Integrating stakeholder feedback in translational genomics research: an ethnographic analysis of a study protocol's evolution.Genetics in medicine : official journal of the American College of Medical Genetics · 2020Article
- Ethical, Legal, and Social Issues Related to the Inclusion of Individuals With Intellectual Disabilities in Electronic Health Record Research: Scoping Review.Journal of medical Internet research · 2020Article
- Informed consent within a learning health system: A scoping review.Learning health systems · 2020Article
- Public perception of predictive cancer genetic testing and research in Oregon.Journal of genetic counseling · 2020Article
- Psychometrics Anonymous: Does a Transparent Data Sharing Policy Affect Data Collection?Psychologica Belgica · 2019Review
- Factors associated with participation by African Americans in a study of the genetics of glaucoma.Ethnicity & health · 2019Article
- Importance of Participant-Centricity and Trust for a Sustainable Medical Information Commons.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2019Article
- Biomedical Research Cohort Membership Disclosure on Social Media.AMIA ... Annual Symposium proceedings. AMIA Symposium · 2019Article
- Genetic Research Using Archival Tissue: Ethical, Social, and Legal Considerations in the United Arab Emirates.Asian bioethics review · 2018Article
- Broad Consent for Research on Biospecimens: The Views of Actual Donors at Four U.S. Medical Centers.Journal of empirical research on human research ethics : JERHRE · 2018Article
- Transparency and choice in learning healthcare systems.Learning health systems · 2018Article
Corrections and comments
- Commented on by
- Commented on by
- Commented on by
- Commented on by
- Commented on by
Authors and funding
11 authors at 9 institutions in 1 country.
Funding
Abstract
It is unclear whether the regulatory distinction between non-identifiable and identifiable information--information used to determine informed consent practices for the use of clinically derived samples for genetic research--is meaningful to patients. The objective of this study was to examine patients' attitudes and preferences regarding use of anonymous and identifiable clinical samples for genetic research. Telephone interviews were conducted with 1,193 patients recruited from general medicine, thoracic surgery, or medical oncology clinics at five United States academic medical centers. Wanting to know about research being done was important to 72% of patients when samples would be anonymous and to 81% of patients when samples would be identifiable. Only 17% wanted to know about the identifiable scenario but not the anonymous scenario (i.e., following the regulatory distinction). Curiosity-based reasons were the most common (37%) among patients who wanted to know about anonymous samples. Of patients wanting to know about either scenario, approximately 57% would require researchers to seek permission, whereas 43% would be satisfied with notification only. Patients were more likely to support permission (versus notification) in the anonymous scenario if they had more education, were Black, less religious, in better health, more private, and less trusting of researchers. The sample, although not representative of the general population, does represent patients at academic medical centers whose clinical samples may be used for genetic research. Few patients expressed preferences consistent with the regulatory distinction between non-identifiable and identifiable information. Data from this study should cause policy-makers to question whether this distinction is useful in relation to research with previously collected clinically derived samples.
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.