ArticleBMC medical ethics2016
A survey of patient perspectives on the research use of health information and biospecimens.
Article in BMC medical ethics, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 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
17 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Patient and Public Willingness to Share Personal Health Data for Third-Party or Secondary Uses: Systematic Review.Journal of medical Internet research · 2024Pooled it
- "Lord Knows What's Being Done with My Blood!": Black Women's Perceptions of Biospecimen Donation for Clinical Research in the United States.Journal of racial and ethnic health disparities · 2025Article
- Health Research with Data in a Time of Privacy: Which Information do Patients Want?Journal of empirical research on human research ethics : JERHRE · 2023Article
- Patients' and Members of the Public's Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review.Journal of medical Internet research · 2023Article
- Public perceptions and attitudes of the national project of bio-big data: A nationwide survey in the Republic of Korea.Frontiers in genetics · 2023Article
- Practices and Attitudes of Bavarian Stakeholders Regarding the Secondary Use of Health Data for Research Purposes During the COVID-19 Pandemic: Qualitative Interview Study.Journal of medical Internet research · 2022Article
- Patient consent preferences on sharing personal health information during the COVID-19 pandemic: "the more informed we are, the more likely we are to help".BMC medical ethics · 2022Article
- Patients' knowledge about their involvement in clinical trials. A non-randomized controlled trial.Frontiers in medicine · 2022Article
- The use of personal health information outside the circle of care: consent preferences of patients from an academic health care institution.BMC medical ethics · 2021Article
- Sharing genomic data from clinical testing with researchers: public survey of expectations of clinical genomic data management in Queensland, Australia.BMC medical ethics · 2020Article
- Improving Research Literacy in Diverse Minority Populations with a Novel Communication Tool.Journal of cancer education : the official journal of the American Association for Cancer Education · 2019Article
- Motivations for data sharing-views of research participants from four European countries: A DIRECT study.European journal of human genetics : EJHG · 2019Article
- Sharing data for future research-engaging participants' views about data governance beyond the original project: a DIRECT Study.Genetics in medicine : official journal of the American College of Medical Genetics · 2019Article
- Through Patients' Eyes: Regulation, Technology, Privacy, and the Future.Yearbook of medical informatics · 2018Article
- Privacy Policy and Technology in Biomedical Data Science.Annual review of biomedical data science · 2018Article
- Factors affecting willingness to share electronic health data among California consumers.BMC medical ethics · 2017Article
- Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors.
Funding
Abstract
backgroundPersonal health information and biospecimens are valuable research resources essential for the advancement of medicine and protected by national standards and provincial statutes. Research ethics and privacy standards attempt to balance individual interests with societal interests. However these standards may not reflect public opinion or preferences. The purpose of this study was to assess the opinions and preferences of patients with kidney disease about the use of their health information and biospecimens for medical research.
methodsA 45-item survey was distributed to a convenience sample of patients at an outpatient clinic in a large urban centre. The survey briefly addressed sociodemographic and illness characteristics. Opinions were sought on the research use of health information and biospecimens including consent preferences.
resultsTwo hundred eleven of 400 distributed surveys were completed (response rate 52.8 %). Respondents were generally supportive of medical research and trusting of researchers. Many respondents supported the use of their information and biospecimens for health research and also preferred consent be sought for use of health information and biospecimens. Some supported the use of their information and biospecimens for research without consent. There were significant differences in the opinions people offered regarding the research use of biospecimens compared to health information. Some respondent perspectives about consent were at odds with current regulatory and legal standards.
conclusionsClinical health data and biospecimens are valuable research resources, critical to the advancement of medicine. Use of these data for research requires balancing respect for individual autonomy, privacy and the societal interest in the greater good. Incongruence between some respondent perspectives and the regulatory standards suggest both a need for public education and review of legislation to increase understanding and ensure the public's trust is maintained.
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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.