ArticleGenetic testing and molecular biomarkers2017
Confidentiality in Biobanking Research: A Comparison of Donor and Nondonor Families' Understanding of Risks.
Article in Genetic testing and molecular biomarkers, 2017. 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.
- Guidelines for Biobanking of Bone Marrow Adipose Tissue and Related Cell Types: Report of the Biobanking Working Group of the International Bone Marrow Adiposity Society.Frontiers in endocrinology · 2021Guideline
- Brain banks in Latin America: Infrastructure for diagnosis, research, and scientific equity in Mexico and the Caribbean.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025Article
- Ten simple rules for research with humans.PLoS computational biology · 2025Article
- Efficient Use of Biological Data in the Web 3.0 Era by Applying Nonfungible Token Technology.Journal of medical Internet research · 2024Article
- Comprehensive analysis of IGF2BP3 with expression features, prognosis, immune modulation and stemness in hepatocellular carcinoma and pan-cancer.Journal of Cancer · 2024Article
- Current aspects in biobanking for personalized oncology investigations and treatments.Medicine and pharmacy reports · 2023Review
- Public awareness and attitudes toward biobank and sample donation: A regional Chinese survey.Frontiers in public health · 2022Article
- Perspectives and ethical considerations for return of genetics and genomics research results: a qualitative study of genomics researchers in Uganda.BMC medical ethics · 2021Article
- Responsiveness and adaptability in community engaged biobanking research: experiences from a Hispanic community.Journal of community genetics · 2019Article
- Consent to a Postmortem Tissue Procurement Study: Distinguishing Family Decision Makers' Knowledge of the Genotype-Tissue Expression Project.Biopreservation and biobanking · 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
- Authorization of tissues from deceased patients for genetic research.Human genetics · 2018Article
- Genes, cells, and biobanks: Yes, there's still a consent problem.PLoS biology · 2017Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
aimsConfidentiality of personal identifiers potentially linking the genetic results from biobanking participants back to the donor and donor relatives is a concern. The risks associated with a breach of confidentiality should be ascertained when biobanks collect samples requiring the consent of a family decision maker (FDM) from deceased organ and tissue donors. This article explores FDM knowledge and opinions regarding risks associated with participation in biobanking research in the context of the Genotype-Tissue Expression (GTEx) Project.
methodsData collection included a survey completed by organ procurement organization requesters (n = 37) and semistructured telephone interviews with the FDMs (n = 85).
resultsDonor families were more likely to know that there was a risk that a patient's identity could be revealed through a breach of confidentiality (p < 0.05). They also were more likely to understand that researchers using biobanked tissue would not have access to the patient's exact identity (p < 0.05). FDMs who refused donation were more concerned about risks than donors and reported lower levels of support for medical research in general. Finally, families were frequently interested in the return of results and willing to trade absolute confidentiality for participation.
conclusionsClear discussion of the risk of breach of confidentiality is needed during the consent process. The risk and benefit equation could be equalized if studies such as GTEx offered genomic results to interested participants.
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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.