ArticleBMC medical ethics2011
Secondary uses and the governance of de-identified data: lessons from the human genome diversity panel.
Article in BMC medical ethics, 2011. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 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
14 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Clinical research data warehouse governance for distributed research networks in the USA: a systematic review of the literature.Journal of the American Medical Informatics Association : JAMIAPooled it
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- Artificial intelligence and medical research databases: ethical review by data access committees.BMC medical ethics · 2023Article
- Charting the Next Road Map for CSF Biomarkers in Alzheimer's Disease and Related Dementias.Neurotherapeutics : the journal of the American Society for Experimental NeuroTherapeutics · 2023Review
- Social and scientific motivations to move beyond groups in allele frequencies: The TOPMed experience.American journal of human genetics · 2022Review
- The MASTiFF panel-a versatile multiple-allele SNP test for forensics.International journal of legal medicine · 2020Article
- Use and Understanding of Anonymization and De-Identification in the Biomedical Literature: Scoping Review.Journal of medical Internet research · 2019Article
- Informed Consent in Translational Genomics: Insufficient Without Trustworthy Governance.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2018Article
- Article
- Bioethics, population studies, and geneticophobia.Journal of community genetics · 2015Article
- Dynamic consent: a patient interface for twenty-first century research networks.European journal of human genetics : EJHG · 2015Article
- Pseudonymization of patient identifiers for translational research.BMC medical informatics and decision making · 2013Article
- Biobanking research on oncological residual material: a framework between the rights of the individual and the interest of society.BMC medical ethics · 2013Article
- Participant-Centric Initiatives: Tools to Facilitate Engagement In Research.Applied & translational genomics · 2012Article
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
backgroundRecent changes to regulatory guidance in the US and Europe have complicated oversight of secondary research by rendering most uses of de-identified data exempt from human subjects oversight. To identify the implications of such guidelines for harms to participants and communities, this paper explores the secondary uses of one de-identified DNA sample collection with limited oversight: the Human Genome Diversity Project (HGDP)-Centre d'Etude du Polymorphisme Humain, Fondation Jean Dausset (CEPH) Human Genome Diversity Panel.
methodsUsing a combination of keyword and cited reference search, we identified English-language scientific articles published between 2002 and 2009 that reported analysis of HGDP Diversity Panel samples and/or data. We then reviewed each article to identify the specific research use to which the samples and/or data was applied. Secondary uses were categorized according to the type and kind of research supported by the collection.
resultsA wide variety of secondary uses were identified from 148 peer-reviewed articles. While the vast majority of these uses were consistent with the original intent of the collection, a minority of published reports described research whose primary findings could be regarded as controversial, objectionable, or potentially stigmatizing in their interpretation.
conclusionsWe conclude that potential risks to participants and communities cannot be wholly eliminated by anonymization of individual data and suggest that explicit review of proposed secondary uses, by a Data Access Committee or similar internal oversight body with suitable stakeholder representation, should be a required component of the trustworthy governance of any repository of data or specimens.
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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.