PMID: identifier of
Pubmed reference: |
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 (15957002)  |
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| title: |
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Communication of pharmacogenetic research results to HIV-infected treated patients: standpoints of professionals and patients. |
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| author(s): |
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Grégoire Moutel ( ) 1, Nathalie Duchange1, François Raffi2, Lama Sharara1, Ioannis Theodorou3, Violaine Noël4, Sandrine De Montgolfier1, Ingrid Callies1, François Bricaire5, Christian Hervé1, Catherine Leport4, The Aproco-Copilote Study Group |
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| abstract: |
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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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| subject: |
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| fulltext language: |
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English |
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| ISSN: |
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1018-4813 |
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| publication format: |
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Article in peer-reviewed journal |
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| DOI: |
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10.1038/sj.ejhg.5201450 |
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| journal: |
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Eur J Hum Genet |
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| publication date: |
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2005-09 |
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| volume: |
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13 |
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| issue: |
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9 |
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| page, identifiant, ...: |
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1055-62 |
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| MeSH Descriptor(s): |
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Attitude of Health Personnel – Attitude to Health – Communication – Controlled Clinical Trials – Ethics – Medical – Genetic Research – HIV Infections – Humans – Informed Consent – Interviews – Pharmacogenetics – Physician-Patient Relations – Questionnaires – Attitude o |
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| contract, financing: |
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Agence Nationale de Recherches sur le Sida (ANRS, Coordinating Action no. 7). Other supports: Collège des Universitaires de Maladies Infectieuses et Tropicales (CMIT, ex APPIT), Sidaction, Ensemble contre le Sida, and associated pharmaceutical companies. |
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