ArticleBMC medical ethics2018
Ethical concerns on sharing genomic data including patients' family members.
Article in BMC medical ethics, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 26 papers, 2 of them syntheses that pooled it.
What it found
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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.
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Who cites it
26 citing papers in PubMed, 2 syntheses or guidelines pooled it, 71 citations in OpenAlex.
- Pooled it
- Patients' perspectives related to ethical issues and risks in precision medicine: a systematic review.Frontiers in medicine · 2023Pooled it
- Maternal perspectives on sharing newborn genomic data.European journal of human genetics : EJHG · 2026Article
- Personalized nutrition for healthy aging: precision diets based on genomic, metabolic, and microbiome profiles.Frontiers in nutrition · 2026Review
- Article
- Lost in .*VCF Translation. From Data Fragmentation to Precision Genomics: Technical, Ethical, and Interpretive Challenges in the Post-Sequencing Era.Journal of personalized medicine · 2025Review
- Investigating Awareness and Acceptance of Digital Phenotyping in Dhaka's Korail Slum: Qualitative Study.JMIR formative research · 2025Article
- Enhancing Cancer Care through Blockchain Technology.Asian Pacific journal of cancer prevention : APJCP · 2025Review
- International consensus statement on microbiome testing in clinical practice.The lancet. Gastroenterology & hepatology · 2025Review
- Calculating genetic risk scores directly from summary statistics with an application to type 1 diabetes.Bioinformatics advances · 2025Article
- Can Open Science Advance Health Justice? Genomic Research Dissemination in the Evolving Data-Sharing Landscape.The Hastings Center report · 2024Article
- Stakeholders' perceptions of personal health data sharing: A scoping review.PLOS digital health · 2024Article
- Ethical considerations for biobanking and use of genomics data in Africa: a narrative review.BMC medical ethics · 2023Review
- Context matters in genomic data sharing: a qualitative investigation into responses from the Australian public.BMC medical genomics · 2023Article
- Genetic Data Governance in Japanese Hospitals.Asian bioethics review · 2023Article
- From collected stamps to hair locks: ethical and legal implications of testing DNA found on privately owned family artifacts.Human genetics · 2023Article
- Public perceptions and attitudes of the national project of bio-big data: A nationwide survey in the Republic of Korea.Frontiers in genetics · 2023Article
- Data sharing practices in collaborative human genomic research in low- and middle-income countries: A systematic review protocol.PloS one · 2023Article
- Health data research on sudden cardiac arrest: perspectives of survivors and their next-of-kin.BMC medical ethics · 2021Article
- Article
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 at 5 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundPlatforms for sharing genomic and phenotype data have been developed to promote genomic research, while maximizing the utility of existing datasets and minimizing the burden on participants. The value of genomic analysis of trios or family members has increased, especially in rare diseases and cancers. This article aims to argue the necessity of protection when sharing data from both patients and family members. MAIN TEXT: Sharing patients' and family members' data collectively raises an ethical tension between the value of datasets and the rights of participants, and increases the risk of re-identification. However, current data-sharing policies have no specific safeguards or provisions for familial data sharing. A quantitative survey conducted on 10,881 general adults in Japan indicated that they expected stronger protection mechanisms when their family members' clinical and/or genomic data were shared together, as compared to when only their data were shared. A framework that respects decision-making and the right of withdrawal of participants, including family members, along with ensuring usefulness and security of data is needed. To enable this, we propose recommendations on ancillary safeguards for familial data sharing according to the stakeholders, namely, initial researchers, genomic researchers, data submitters, database operators, institutional review boards, and the public and participants.
conclusionsFamilies have played significant roles in genetic research, and its value is re-illuminated in the era of genomic medicine. It is important to make progress in data sharing while simultaneously protecting the privacy and interests of patients and families, and return its benefits to them.
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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.