ArticleJournal of empirical research on human research ethics : JERHRE2011
"If I could in a small way help": motivations for and beliefs about sample donation for genetic research.
Article in Journal of empirical research on human research ethics : JERHRE, 2011. 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.
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Who cites it
20 citing papers in PubMed.
- Assessing Perceptions of Broad Consent Concerning Biological Specimen Collection in a Cohort of Young Sexual Minority Men.Archives of sexual behavior · 2021Article
- Citizens' conceptions of the genome: Related values and practical implications in a citizen forum on the use of genomic information.Health expectations : an international journal of public participation in health care and health policy · 2021Article
- Teenagers and Precision Psychiatry: A Window of Opportunity.Public health genomics · 2021Article
- "It's being part of the big picture, even though you're a tiny jigsaw piece"-motivations and expectations of individuals participating in the Enroll-HD observational study.Journal of community genetics · 2020Article
- Article
- Disability inclusion in precision medicine research: a first national survey.Genetics in medicine : official journal of the American College of Medical Genetics · 2019Article
- Attitudes Regarding Enrollment in a Genetic Research Project: An Informed Consent Simulation Study Comparing Views of People With Depression, Diabetes, and Neither Condition.Journal of empirical research on human research ethics : JERHRE · 2019Article
- Postmortem brain tissue as an underutilized resource to study the molecular pathology of neuropsychiatric disorders across different ethnic populations.Neuroscience and biobehavioral reviews · 2019Review
- Authorization of tissues from deceased patients for genetic research.Human genetics · 2018Article
- The Precision Medicine Nation.The Hastings Center report · 2017Article
- "We're checking them out": Indigenous and non-Indigenous research participants' accounts of deciding to be involved in research.International journal for equity in health · 2016Article
- Participants' Role Expectations in Genetics Research and Re-consent: Revising the Theory and Methods of Mental Models Research Relating to Roles.Journal of health communication · 2016Article
- Flexible positions, managed hopes: the promissory bioeconomy of a whole genome sequencing cancer study.Social science & medicine (1982) · 2015Article
- Discussing race-related limitations of genomic testing for colon cancer risk: implications for education and counseling.Social science & medicine (1982) · 2014Article
- Neglected ethical issues in biobank management: Results from a U.S. study.Life sciences, society and policy · 2013Article
- Self-guided management of exome and whole-genome sequencing results: changing the results return model.Genetics in medicine : official journal of the American College of Medical Genetics · 2013Article
- Attitudes of African Americans toward return of results from exome and whole genome sequencing.American journal of medical genetics. Part A · 2013Article
- The meaning of genetic research results: reflections from individuals with and without a known genetic disorder.Journal of empirical research on human research ethics : JERHRE · 2011Article
- The Meaning of Informed Consent: Genome Editing Clinical Trials for Sickle Cell Disease.AJOB empirical bioethicsArticle
- Balancing Benefits and Risks of Immortal Data: Participants' Views of Open Consent in the Personal Genome Project.The Hastings Center reportArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors.
Funding
Abstract
Human genome research depends upon participants who donate genetic samples, but few studies have explored in depth the motivations of genetic research donors. This mixed methods study examines telephone interviews with 752 sample donors in a U.S. genetic epidemiology study investigating colorectal cancer. Quantitative and qualitative results indicate that most participants wanted to help society, and that many also wanted information about their own health, even though such information was not promised. Qualitative analysis reveals that donors believed their samples contributed to a scientific "common good"; imagined samples as information rather than tissues; and often blurred distinctions between research and diagnostic testing of samples. Differences between African American and White perspectives were distinct from educational and other possible explanatory factors.
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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.