ReviewHuman genetics2011
Biobanking and deceased persons.
Review in Human genetics, 2011. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 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
13 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Stakeholders' perspectives on the post-mortem use of genetic and health-related data for research: a systematic review.European journal of human genetics : EJHG · 2020Pooled it
- Medico-Legal Issues in Cremation: Comparative Analysis of International Legislation.Healthcare (Basel, Switzerland) · 2022Article
- Contextual Exceptionalism After Death: An Information Ethics Approach to Post-Mortem Privacy in Health Data Research.Science and engineering ethics · 2022Article
- Legal Implications of Stroke Biobanking and Genomics Research in Sub-Saharan Africa.Journal of law and medicine · 2022Article
- To use or not to use? an ethical analysis of access to data and samples of a deceased patient for genetic diagnostic and research purposes.Journal of medical ethics and history of medicine · 2022Article
- An Examination of the Ethical and Legal Limits in Implementing "Traceback Testing" for Deceased Patients.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2022Article
- Advances in Digital Technology in Teaching Human Anatomy: Ethical Predicaments.Advances in experimental medicine and biology · 2022Article
- Health data research on sudden cardiac arrest: perspectives of survivors and their next-of-kin.BMC medical ethics · 2021Article
- Symbolic Legislation and the Regulation of Stroke Biobanking and Genomics Research in Sub-Saharan Africa.The theory and practice of legislation · 2021Article
- Ethical aspects of sudden cardiac arrest research using observational data: a narrative review.Critical care (London, England) · 2018Review
- 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
- Return of individual research results and incidental findings: facing the challenges of translational science.Annual review of genomics and human genetics · 2013Review
- The art and science of biobanking.Human genetics · 2011Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
1 author.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Early biomedical research focused primarily on the study of specific diseases or sets of diseases within small groups of living research participants. Accordingly, the first ethical frameworks governing biomedical research addressed short-term, limited-scope research involving living research participants. Due to recent interest in longitudinal population studies and biobanking, research is increasingly long term. This shift raises several ethical and legal issues concerning the impact of a participant's death on research. This paper offers an overview of these issues in the context of longitudinal biobanking genetic research. Our first part outlines the legal and ethical frameworks that govern the effect of the participants' death on consent. This will be followed by an analysis of the legal and ethical frameworks that govern the secondary use of deceased participants' data and samples and the return of deceased participants' individual research results to biological family members. In our second part, we will review the current literature and discuss the above mentioned issues using the bioethics "principlism" theory before concluding.
Indexed as
Identifiers
21706182What 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.