ArticleBMC medical ethics2016
Patient and interest organizations' views on personalized medicine: a qualitative study.
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 19 papers.
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.
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Who cites it
19 citing papers in PubMed.
- Stakeholders' expectations of precision medicine: A qualitative study to identify areas of (mis)alignment.Health science reports · 2023Article
- Presenting wicked problems in a science museum: A methodology to study interest from a dynamic perspective.Frontiers in psychology · 2023Article
- Multidisciplinary Effort to Drive Precision-Medicine for the Future.Frontiers in digital health · 2022Article
- "The Stakes Are Higher"- Patient and Caregiver Perspectives on Cystic Fibrosis Research and Personalized Medicine.Frontiers in medicine · 2022Article
- Patients' and professionals' views related to ethical issues in precision medicine: a mixed research synthesis.BMC medical ethics · 2021Review
- Perceptions of 'Precision' and 'Personalised' Medicine in Singapore and Associated Ethical Issues.Asian bioethics review · 2021Article
- My Data, My Choice? - German Patient Organizations' Attitudes towards Big Data-Driven Approaches in Personalized Medicine. An Empirical-Ethical Study.Journal of medical systems · 2021Article
- Pharmacogenomics Implementation and Hurdles to Overcome; In the Context of a Developing Country.Iranian journal of pharmaceutical research : IJPR · 2021Article
- Engaging publics in biobanking and genetic research governance - a literature review towards informing practice in India.Wellcome open research · 2021Article
- A Network-Based Mixed Methods Approach to Analyze Current Perspectives on Personalized Oncological Medicine in Austria.Journal of personalized medicine · 2020Article
- Secondary actionable findings identified by exome sequencing: expected impact on the organisation of care from the study of 700 consecutive tests.European journal of human genetics : EJHG · 2019Article
- Contested futures: envisioning "Personalized," "Stratified," and "Precision" medicine.New genetics and society · 2019Article
- Implementing personalized medicine in diabetic kidney disease: Stakeholders' perspectives.Diabetes, obesity & metabolism · 2018Review
- Representing a "revolution": how the popular press has portrayed personalized medicine.Genetics in medicine : official journal of the American College of Medical Genetics · 2018Article
- Patient data and patient rights: Swiss healthcare stakeholders' ethical awareness regarding large patient data sets - a qualitative study.BMC medical ethics · 2018Article
- Ethical considerations of neuro-oncology trial design in the era of precision medicine.Journal of neuro-oncology · 2017Review
- Personalized Medicine in a New Genomic Era: Ethical and Legal Aspects.Science and engineering ethics · 2017Article
- Partnering with patients in translational oncology research: ethical approach.Journal of translational medicine · 2017Article
- Introduction to the article collection 'Translation in healthcare: ethical, legal, and social implications'.BMC medical ethics · 2016Article
Corrections and comments
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Authors and funding
2 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundPersonalized medicine (PM) aims to tailor disease prevention, diagnosis, and treatment to individuals on the basis of their genes, lifestyle and environments. Patient and interest organizations (PIOs) may potentially play an important role in the realization of PM. This paper investigates the views and perspectives on PM of a variety of PIOs.
methodsSemi-structured telephone interviews were conducted among leading representatives of 13 PIOs located in Europe and North-America. The data collected were analysed using a conventional content analysis approach.
resultsThe PIO representatives supported the realization of PM but feared that many financial, structural and organizational challenges may delay its realization. They encouraged strategies to modernize drug licencing mechanisms, develop research and data sharing infrastructures, and educate patients and health care professionals in PM. Notably, they emphasized the importance of developing PM in an equitable way and taking into consideration the patients' needs, values and personal situation. Despite varying levels of awareness regarding PM, the PIO representatives expressed willingness to engage in the PM agenda and recommended that PIOs work closely with policy-makers to design PM in a way that truly addresses the needs and concerns of patients.
conclusionsPIOs have the potential to become central drivers of the PM agenda. Collaborations should be further developed between PIOs, researchers, drug developers and health care authorities.
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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.