ArticlePersonalized medicine2009
Eyes wide open: the personal genome project, citizen science and veracity in informed consent.
Article in Personalized medicine, 2009. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 26 papers.
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
26 citing papers in PubMed, 73 citations in OpenAlex.
- Exploring Metadata Catalogs in Health Care Data Ecosystems: Taxonomy Development Study.JMIR formative research · 2025Article
- Using a chat-based informed consent tool in large-scale genomic research.Journal of the American Medical Informatics Association : JAMIA · 2024Article
- A pathway to strengthening open science: comments on the draftFrontiers in pharmacology · 2024Review
- Toward an open access genomics database of South Africans: ethical considerations.Frontiers in genetics · 2023Article
- Respect, justice and learning are limited when patients are deidentified data subjects.Learning health systems · 2022Article
- Article
- Informed Consent in Biomedical Research.Computational and structural biotechnology journal · 2019Review
- Citizen science applied to building healthier community environments: advancing the field through shared construct and measurement development.The international journal of behavioral nutrition and physical activity · 2017Article
- Sharing Data to Build a Medical Information Commons: From Bermuda to the Global Alliance.Annual review of genomics and human genetics · 2017Review
- Citizen science or scientific citizenship? Disentangling the uses of public engagement rhetoric in national research initiatives.BMC medical ethics · 2016Article
- Development and preliminary evaluation of an online educational video about whole-genome sequencing for research participants, patients, and the general public.Genetics in medicine : official journal of the American College of Medical Genetics · 2016Article
- The Ethics of Big Data: Current and Foreseeable Issues in Biomedical Contexts.Science and engineering ethics · 2016Review
- Personal Genome Sequencing in Ostensibly Healthy Individuals and the PeopleSeq Consortium.Journal of personalized medicine · 2016Review
- Motivations, concerns and preferences of personal genome sequencing research participants: Baseline findings from the HealthSeq project.European journal of human genetics : EJHG · 2016Article
- On the privacy risks of sharing clinical proteomics data.AMIA Joint Summits on Translational Science proceedings. AMIA Joint Summits on Translational Science · 2016Article
- Article
- País de gordos/país de muertos: Obesity, death and nation in biomedical and forensic genetics in Mexico.Social studies of science · 2015Article
- Personal genomes, participatory genomics and the anonymity-privacy conundrum.Journal of genetics · 2014Article
- Article
- Evolving approaches to the ethical management of genomic data.Trends in genetics : TIG · 2013Review
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 at 1 institution in 1 country.
Funding
Abstract
I am a close observer of the Personal Genome Project (PGP) and one of the original ten participants. The PGP was originally conceived as a way to test novel DNA sequencing technologies on human samples and to begin to build a database of human genomes and traits. However, its founder, Harvard geneticist George Church, was concerned about the fact that DNA is the ultimate digital identifier - individuals and many of their traits can be identified. Therefore, he believed that promising participants privacy and confidentiality would be impractical and disingenuous. Moreover, deidentification of samples would impoverish both genotypic and phenotypic data. As a result, the PGP has arguably become best known for its unprecedented approach to informed consent. All participants must pass an exam testing their knowledge of genomic science and privacy issues and agree to forgo the privacy and confidentiality of their genomic data and personal health records. Church aims to scale up to 100,000 participants. This special report discusses the impetus for the project, its early history and its potential to have a lasting impact on the treatment of human subjects in biomedical research.
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.