ArticlePersonalized medicine2014
The unintended implications of blurring the line between research and clinical care in a genomic age.
Article in Personalized medicine, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 papers, 1 of them a synthesis that pooled it.
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
19 citing papers in PubMed, 1 synthesis or guideline pooled it, 43 citations in OpenAlex.
- Informed consent in genetic and genomic studies in Sub-Saharan Africa: a systematic review of bioethical issues.BMC medical ethics · 2025Pooled it
- Covering medical care costs for participants in the eMERGE Network: Challenges for equity and implementation.Genetics in medicine : official journal of the American College of Medical Genetics · 2025Article
- Researcher views on returning results from multi-omics data to research participants: insights from The Molecular Transducers of Physical Activity Consortium (MoTrPAC) Study.BMC medical ethics · 2025Article
- Better governance starts with better words: why responsible human tissue research demands a change of language.BMC medical ethics · 2022Article
- Practices and Attitudes toward Returning Genomic Research Results to Low-Resource Research Participants.Public health genomics · 2021Article
- Ethics framework for treatment use of investigational drugs.BMC medical ethics · 2020Article
- Why genomics researchers are sometimes morally required to hunt for secondary findings.BMC medical ethics · 2020Article
- Article
- Participant Engagement in Translational Genomics Research: Respect for Persons-and Then Some.Ethics & human research · 2019Article
- Privacy and ethical challenges in next-generation sequencing.Expert review of precision medicine and drug development · 2019Article
- Strategies to Guide the Return of Genomic Research Findings: An Australian Perspective.Journal of bioethical inquiry · 2018Article
- Australia: regulating genomic data sharing to promote public trust.Human genetics · 2018Review
- Navigating the research-clinical interface in genomic medicine: analysis from the CSER Consortium.Genetics in medicine : official journal of the American College of Medical Genetics · 2018Article
- "Not pathogenic until proven otherwise": perspectives of UK clinical genomics professionals toward secondary findings in context of a Genomic Medicine Multidisciplinary Team and the 100,000 Genomes Project.Genetics in medicine : official journal of the American College of Medical Genetics · 2018Article
- Leaves imitate trees: Minnesota Hmong concepts of heredity and applications to genomics research.Journal of community genetics · 2017Article
- Improving the informed consent process in international collaborative rare disease research: effective consent for effective research.European journal of human genetics : EJHG · 2016Article
- Ethical Considerations for the Return of Incidental Findings in Ophthalmic Genomic Research.Translational vision science & technology · 2016Article
- Points to Consider: Ethical, Legal, and Psychosocial Implications of Genetic Testing in Children and Adolescents.American journal of human genetics · 2015Review
- Mapping the Ethics of Translational Genomics: Situating Return of Results and Navigating the Research-Clinical Divide.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2015Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors at 1 institution in 2 countries.
Funding
Abstract
While the development of next-generation sequencing technology has had a paradigm-changing impact on biomedical research, there is likely to be a gap between discovery of therapeutic benefits in research and actual adoption of the new technology into clinical practice. This gap can create pressure on the research enterprise to provide individualized care more typical of the clinic setting because it is uniquely accessible in research. This blurring of the line between research and clinical care is understandable, and perhaps even inevitable. But even if the gap is only transitory, such a blurring can have lasting implications, both by expanding obligations imposed on researchers, but also by challenging long-held ethical views. We explore this idea, focusing on how the dissolving distinction between research and clinical care has influenced the vigorous debate around how researchers should manage genetic findings (sometimes separated into primary and incidental or secondary findings) resulting from research.
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.