ArticleJournal of medical genetics2015
Potential research participants support the return of raw sequence data.
Article in Journal of medical genetics, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 27 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
27 citing papers in PubMed.
- Should recipient parents have access to gamete donors' raw genomic data? Clinical, legal, and ethical considerations.Journal of assisted reproduction and genetics · 2025Article
- Returning raw genomic data to research participants in a pediatric cancer precision medicine trial.NPJ genomic medicine · 2025Article
- From code to care: Clinician and researcher perspectives on an optimal therapeutic web portal for acute myeloid leukemia.PloS one · 2024Article
- Return of Participants' Incidental Genetic Research Findings: Experience from a Case-Control Study of Asthma in an American Indian Community.Journal of personalized medicine · 2023Article
- 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
- Return of Participants' Incidental Genetic Research Findings: Experience from a Case-Control Study of Asthma in an American Indian Community.Research square · 2023Article
- Returning raw genomic data: rights of research participants and obligations of health care professionals.The Medical journal of Australia · 2022Article
- Please give me a copy of my child's raw genomic data.NPJ genomic medicine · 2021Article
- What Results Should Be Returned from Opportunistic Screening in Translational Research?Journal of personalized medicine · 2020Article
- Genome sequencing in healthcare: understanding the UK general public's views and implications for clinical practice.European journal of human genetics : EJHG · 2020Article
- 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
- Article
- Third-Party Genetic Interpretation Tools: A Mixed-Methods Study of Consumer Motivation and Behavior.American journal of human genetics · 2019Article
- Mind the gap: resources required to receive, process and interpret research-returned whole genome data.Human genetics · 2019Review
- Genomic Testing for Human Health and Disease Across the Life Cycle: Applications and Ethical, Legal, and Social Challenges.Frontiers in public health · 2019Review
- Attitudes of stakeholders in psychiatry towards the inclusion of children in genomic research.Human genomics · 2018Article
- APPLaUD: access for patients and participants to individual level uninterpreted genomic data.Human genomics · 2018Review
- Participant-Partners in Genetic Research: An Exome Study with Families of Children with Unexplained Medical Conditions.Journal of participatory medicine · 2018Article
- Transferring Exome Sequencing Data from Clinical Laboratories to Healthcare Providers: Lessons Learned at a Pediatric Hospital.Frontiers in genetics · 2018Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors.
Funding
Abstract
Health-related results that are discovered in the process of genomic research should only be returned to research participants after being clinically validated and then delivered and followed up within a health service. Returning such results may be difficult for genomic researchers who are limited by resources or unable to access appropriate clinicians. Raw sequence data could, in theory, be returned instead. This might appear nonsensical as, on its own, it is a meaningless code with no clinical value. Yet, as and when direct to consumer genomics services become more widely available (and can be endorsed by independent health professionals and genomic researchers alike), the return of such data could become a realistic proposition. We explore attitudes from <7000 members of the public, genomic researchers, genetic health professionals and non-genetic health professionals and ask participants to suggest what they would do with a raw sequence, if offered it. Results show 62% participants were interested in using it to seek out their own clinical interpretation. Whilst we do not propose that raw sequence data should be returned at the moment, we suggest that should this become feasible in the future, participants of sequencing studies may possibly support this.
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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.