ArticleBMC medical ethics2016
Becoming partners, retaining autonomy: ethical considerations on the development of precision medicine.
Article in BMC medical ethics, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 25 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
25 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Community engagement in research in sub-Saharan Africa: current practices, barriers, facilitators, ethical considerations and the role of gender - a systematic review.The Pan African medical journal · 2022Pooled it
- The ethical aspects of human organ-on-chip models: A mapping review.Stem cell reports · 2025Review
- Big Data, Machine Learning, and Personalization in Health Systems: Ethical Issues and Emerging Trade-Offs.Science and engineering ethics · 2025Article
- AI-Assisted Decision-Making in Long-Term Care: Qualitative Study on Prerequisites for Responsible Innovation.JMIR nursing · 2024Article
- The ethical challenges of diversifying genomic data: A qualitative evidence synthesis.Cambridge prisms. Precision medicine · 2024Review
- Integrating Early-Stage Drug Development with Clinical Networks; Challenges and Opportunities: The City of Hope Developing Experience.Journal of clinical medicine · 2023Article
- Article
- Better governance starts with better words: why responsible human tissue research demands a change of language.BMC medical ethics · 2022Article
- Facing new challenges to informed consent processes in the context of translational research: the case in CARPEM consortium.BMC medical ethics · 2021Review
- Rethinking the Importance of the Individual within a Community of Data.The Hastings Center report · 2020Article
- Article
- Taking patient involvement seriously: a critical ethical analysis of participatory approaches in data-intensive medical research.BMC medical informatics and decision making · 2019Article
- Hopeful and Concerned: Public Input on Building a Trustworthy Medical Information Commons.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2019Article
- The Role of Participants in a Medical Information Commons.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2019Article
- WHY WE FEAR GENETIC INFORMANTS: USING GENETIC GENEALOGY TO CATCH SERIAL KILLERS.The Columbia science and technology law review · 2019Article
- Elements of Trust in Digital Health Systems: Scoping Review.Journal of medical Internet research · 2018Article
- On Female Genital Cutting: Factors to be Considered When Confronted With a Request to Re-infibulate.Journal of bioethical inquiry · 2018Article
- User Perspectives of a Web-Based Data-Sharing Platform (Open Humans) on Ethical Oversight in Participant-Led Research: Protocol for a Quantitative Study.JMIR research protocols · 2018Article
- Health Research with Big Data: Time for Systemic Oversight.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2018Article
- The regulation of clinical research: What's love got to do with it?Learning health systems · 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
2 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Precision medicine promises to develop diagnoses and treatments that take individual variability into account. According to most specialists, turning this promise into reality will require adapting the established framework of clinical research ethics, and paying more attention to participants' attitudes towards sharing genotypic, phenotypic, lifestyle data and health records, and ultimately to their desire to be engaged as active partners in medical research.Notions such as participation, engagement and partnership have been introduced in bioethics debates concerning genetics and large-scale biobanking to broaden the focus of discussion beyond individual choice and individuals' moral interests. The uptake of those concepts in precision medicine is to be welcomed. However, as data and medical information from research participants in precision medicine cohorts will be collected on an individual basis, translating a participatory approach in this emerging area may prove cumbersome. Therefore, drawing on Joseph Raz's perfectionism, we propose a principle of respect for autonomous agents that, we reckon, can address many of the concerns driving recent scholarship on partnership and public participation, while avoiding some of the limitations these concept have in the context of precision medicine. Our approach offers a normative clarification to how becoming partners in precision is compatible with retaining autonomy.Realigning the value of autonomy with ideals of direct engagement, we show, can provide adequate normative orientation to precision medicine; it can do justice to the idea of moral pluralism by stressing the value of moral self-determination: and, finally, it can reconcile the notion of autonomy with other more communitarian values such as participation and solidarity.
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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.