ReviewHuman molecular genetics2018
Society and personal genome data.
Review in Human molecular genetics, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 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
14 citing papers in PubMed.
- Australian public perspectives on genomic data governance: responsibility, regulation, and logistical considerations.European journal of human genetics : EJHG · 2024Article
- Context matters in genomic data sharing: a qualitative investigation into responses from the Australian public.BMC medical genomics · 2023Article
- Adoptees' views and experiences of direct-to-consumer (DTC) genomic testing: an exploratory interview study from the UK.Journal of community genetics · 2023Article
- Who's afraid of genetic tests?: An assessment of Singapore's public attitudes and changes in attitudes after taking a genetic test.BMC medical ethics · 2022Article
- Citizen engagement initiatives in precision health in the European Union member states: a scoping review.BMJ open · 2021Article
- Uncovering social structures and informational prejudices to reduce inequity in delivery and uptake of new molecular technologies.Journal of medical ethics · 2020Article
- Members of the public in the USA, UK, Canada and Australia expressing genetic exceptionalism say they are more willing to donate genomic data.European journal of human genetics : EJHG · 2020Article
- Genomic Sequencing Capacity, Data Retention, and Personal Access to Raw Data in Europe.Frontiers in genetics · 2020Article
- Trust in genomic data sharing among members of the general public in the UK, USA, Canada and Australia.Human genetics · 2019Article
- Attitudes of publics who are unwilling to donate DNA data for research.European journal of medical genetics · 2019Article
- Communicable Disease Surveillance Ethics in the Age of Big Data and New Technology.Asian bioethics review · 2019Article
- Bridging the Gaps in Personalized Medicine Value Assessment: A Review of the Need for Outcome Metrics across Stakeholders and Scientific Disciplines.Public health genomics · 2019Review
- Genomic Testing for Human Health and Disease Across the Life Cycle: Applications and Ethical, Legal, and Social Challenges.Frontiers in public health · 2019Review
- Optimizing Precision Medicine for Public Health.Frontiers in public health · 2019Review
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
Abstract
Genomic data offer a goldmine of information for understanding the contribution of genetic variation makes to health and disease. The potential of genomic medicine, to predict, diagnose, manage and treat genetic disease, is underpinned by accurate variant interpretation. This in itself hinges on the ability to access large and varied genomic databases. There is now recognition that international collaboration between research and healthcare systems are paramount to delivering the scale of genomic data required. No single research group, institute or country will liberate our understanding, it is only through global cooperation, together with super computing power, will we truly make sense of how genotype and phenotype correlate. Whilst it is logistically possible to create computing systems that talk to each other and aggregate datasets ready to reveal novel correlations, the bottom line is that this will only happen if people (whether they be scientists, clinicians, patients, research participants, policy makers, politicians, law makers) support the principle that we should be donating, accessing and sharing our DNA data in this way. And in order to make the most sense of genomics, given the geographical and ancestral variation between us, such people are likely to be the majority of society. Within this review, a perspective is proffered on the human story that underpins genomic 'big data' access and how we are at a tipping point as a society-we need to decide collectively, are we in? and if so, what needs to be in place to protect us? or are we out?
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.