ArticleEuropean journal of human genetics : EJHG2005
Communication of pharmacogenetic research results to HIV-infected treated patients: standpoints of professionals and patients.
Article in European journal of human genetics : EJHG, 2005. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 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
13 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Return of individual research results from genomic research: A systematic review of stakeholder perspectives.PloS one · 2021Pooled it
- Acceptability of Pharmacogenetic Testing among French Psychiatrists, a National Survey.Journal of personalized medicine · 2021Article
- Attitudes of Dilated Cardiomyopathy Patients and Investigators Toward Genomic Study Enrollment, Consent Process, and Return of Genetic Results.Clinical and translational science · 2021Observational
- Patient/family views on data sharing in rare diseases: study in the European LeukoTreat project.European journal of human genetics : EJHG · 2016Article
- Communication of genetic test results to family and health-care providers following disclosure of research results.Genetics in medicine : official journal of the American College of Medical Genetics · 2014Article
- Feedback of research findings for vaccine trials: experiences from two malaria vaccine trials involving healthy children on the Kenyan Coast.Developing world bioethics · 2013Article
- Considerations in the construction of an instrument to assess attitudes regarding critical illness gene variation research.Journal of empirical research on human research ethics : JERHRE · 2012Article
- Feedback of trial results to participants: a survey of clinicians' and patients' attitudes and experiences.European journal of oncology nursing : the official journal of European Oncology Nursing Society · 2011Article
- Biobanking in pediatrics: the human nonsubjects approach.Personalized medicine · 2011Article
- Public perspectives on returning genetics and genomics research results.Public health genomics · 2011Article
- Researcher practices on returning genetic research results.Genetic testing and molecular biomarkers · 2010Article
- Preferences regarding genetic research results: comparing veterans and nonveterans responses.Public health genomics · 2010Article
- Communicating the results of clinical research to participants: attitudes, practices, and future directions.PLoS medicine · 2008Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
12 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
The aim of pharmacogenetic studies is to adapt therapeutic strategies to individual genetic profiles, thus maximising their efficacy and minimising the likelihood of adverse side effects. Since the advent of personalised medicine, the issue of communicating research results to participants has become increasingly important. We addressed this question in the context of HIV infection, as patients and associations are particularly concerned by research and therapeutic advances. We explored the standpoints of both research professionals and participants involved in a pharmacogenetic study conducted in a cohort of HIV-infected patients. The setting of the research protocol was followed over a 2-year period. Participants' standpoints were collected through a questionnaire and interviews were conducted with research professionals. Of 125 participants, 76% wished to receive individual results and 71% wished to receive collective results; 39% did not know when results might be expected. Communication of global research results is a principle that is generally accepted by professionals. Concerning individual feedback, the professionals felt that it was necessary if it could be of direct benefit to the participant, but they expressed doubts for situations with no recognised benefit. Our results highlight the necessity to consider this issue in greater detail. We suggest the need to anticipate the debates concerning individual feedback, to differentiate between situations and the importance of further investigations on the opportunities and modalities of communication. Finally, our work emphasised the opposite pressures between the pursuit of scientific knowledge and the therapeutic orientation of clinical trials.
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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.