ArticleWellcome open research2017
Returning genome sequences to research participants: Policy and practice.
Article in Wellcome open research, 2017. 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.
- Article
- Australian public perspectives on genomic data governance: responsibility, regulation, and logistical considerations.European journal of human genetics : EJHG · 2024Article
- Returning Individual Research Results from Digital Phenotyping in Psychiatry.The American journal of bioethics : AJOB · 2024Article
- Return of Results in Genomic Research Using Large-Scale or Whole Genome Sequencing: Toward a New Normal.Annual review of genomics and human genetics · 2023Review
- Genomic Diagnosis of Rare Pediatric Disease in the United Kingdom and Ireland.The New England journal of medicine · 2023Article
- Please give me a copy of my child's raw genomic data.NPJ genomic medicine · 2021Article
- Do patients and research subjects have a right to receive their genomic raw data? An ethical and legal analysis.BMC medical ethics · 2020Article
- Genomic Sequencing Capacity, Data Retention, and Personal Access to Raw Data in Europe.Frontiers in genetics · 2020Article
- An actionable KCNH2 Long QT Syndrome variant detected by sequence and haplotype analysis in a population research cohort.Scientific reports · 2019Article
- Third-Party Genetic Interpretation Tools: A Mixed-Methods Study of Consumer Motivation and Behavior.American journal of human genetics · 2019Article
- Attitudes of publics who are unwilling to donate DNA data for research.European journal of medical genetics · 2019Article
- Advancing Personalized Medicine Through the Application of Whole Exome Sequencing and Big Data Analytics.Frontiers in genetics · 2019Review
- Society and personal genome data.Human molecular genetics · 2018Review
- Genomic medicine and data sharing.British medical bulletin · 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
7 authors.
Funding
Abstract
Despite advances in genomic science stimulating an explosion of literature around returning health-related findings, the possibility of returning entire genome sequences to individual research participants has not been widely considered. Through direct involvement in large-scale translational genomics studies, we have identified a number of logistical challenges that would need to be overcome prior to returning individual genome sequence data, including verifying that the data belong to the requestor and providing appropriate informatics support. In addition, we identify a number of ethico-legal issues that require careful consideration, including returning data to family members, mitigating against unintended consequences, and ensuring appropriate governance. Finally, recognising that there is an opportunity cost to addressing these issues, we make some specific pragmatic suggestions for studies that are considering whether to share individual genomic datasets with individual study participants. If data are shared, research should be undertaken into the personal, familial and societal impact of receiving individual genome sequence data.
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.