ArticlePublic health genomics2010
Structuring public engagement for effective input in policy development on human tissue biobanking.
Article in Public health genomics, 2010. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 37 papers, 2 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
37 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Current practice of public involvement activities in biomedical research and innovation: a systematic qualitative review.PloS one · 2014Pooled it
- Ethical aspects of human biobanks: a systematic review.Croatian medical journal · 2011Pooled it
- From Biobank to "Bio-Think-Tank": Functional Evolution of UK Biobank in Public Health Policy Making.Public health reviews · 2026Review
- What does engagement mean to participants in longitudinal cohort studies? A qualitative study.BMC medical ethics · 2021Article
- Article
- Engaging publics in biobanking and genetic research governance - a literature review towards informing practice in India.Wellcome open research · 2021Article
- A virtual deliberative public engagement study on heritable genome editing among South Africans: Study protocol.PloS one · 2021Article
- Ethical, Legal, and Social Issues (ELSI) in Clinical Genetics Research.Methods in molecular biology (Clifton, N.J.) · 2021Article
- Race, Trust in Doctors, Privacy Concerns, and Consent Preferences for Biobanks.Health communication · 2020Article
- The reported impact of public involvement in biobanks: A scoping review.Health expectations : an international journal of public participation in health care and health policy · 2020Article
- Parental perspectives on retention and secondary use of neonatal dried bloodspots: a Dutch mixed methods study.BMC pediatrics · 2019Article
- Paying Tribute to Henrietta Lacks at Tuskegee University and at The Virginia Henrietta Lacks Commission, Richmond, Virginia.Journal of health care for the poor and underserved · 2019Article
- Population's perspectives toward biobanks in scientific research: a study from Jordan.Pharmacogenomics and personalized medicine · 2019Article
- Multiple diversity concepts and their ethical-epistemic implications.European journal for philosophy of science · 2018Article
- The ECOUTER methodology for stakeholder engagement in translational research.BMC medical ethics · 2017Article
- Needs and Requirements of Modern Biobanks on the Example of Dystonia Syndromes.Frontiers in neurology · 2017Article
- Community recommendations on biobank governance: Results from a deliberative community engagement in California.PloS one · 2017Article
- Becoming partners, retaining autonomy: ethical considerations on the development of precision medicine.BMC medical ethics · 2016Article
- Lessons from HeLa Cells: The Ethics and Policy of Biospecimens.Annual review of genomics and human genetics · 2016Review
- Health professionals' opinions on supporting a cancer biobank: identification of barriers to combat biobanking pitfalls.European journal of human genetics : EJHG · 2016Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors.
Funding
Abstract
We begin with the premise that human tissue biobanking is associated with ethical ambiguities and regulatory uncertainty, and that public engagement is at least one important element in addressing such challenges. One is then confronted with how to achieve public engagement that is both meaningful and effective. In particular, how can public engagement on the topic of biobanking be implemented so that (a) it is perceived broadly as legitimate and (b) the results of the engagement are relevant and useful to the institutional and regulatory context? In this paper we build on previous work that has addressed the former point and focus primarily on the latter. We argue that one way to increase the likelihood of results of public engagement being taken up in policy is through framing the issues that are deliberated by members of the public based in part on the practical policy questions for which input is sought. In this approach, we move discussion on the social and ethical implications of biobanking from abstract principles, to their consideration in the context of local biobanking practices. This is illustrated using a practical example involving a public engagement conducted to inform institutional policy for biobanking in British Columbia, Canada.
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.