title: Communication of pharmacogenetic research results to HIV-infected treated patients: standpoints of professionals and patients.
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.
authors.affiliation: Laboratoire d'Ethique Médicale et Médecine Légale & Institut International de Recherche en Ethique Biomédicale, Faculté de Médecine Paris 5. 45 rue des Saints-Pères, Paris 75006, France. moutel@necker.fr
authors.forename: Grégoire
authors.initials: G
authors.lastname: Moutel
authors.forename: Nathalie
authors.initials: N
authors.lastname: Duchange
authors.forename: François
authors.initials: F
authors.lastname: Raffi
authors.forename: Lama I
authors.initials: LI
authors.lastname: Sharara
authors.forename: Ioannis
authors.initials: I
authors.lastname: Théodorou
authors.forename: Violaine
authors.initials: V
authors.lastname: Noël
authors.forename: Sandrine
authors.initials: S
authors.lastname: de Montgolfier
authors.forename: Ingrid
authors.initials: I
authors.lastname: Callies
authors.forename: François
authors.initials: F
authors.lastname: Bricaire
authors.forename: Christian
authors.initials: C
authors.lastname: Hervé
authors.forename: Catherine
authors.initials: C
authors.lastname: Leport
mesh_terms: D001291:Attitude of Health Personnel; D001294:Attitude to Health; D003142:Communication; D018849:Controlled Clinical Trials as Topic; D004992:Ethics, Medical; D036281:Genetic Research; D015658:HIV Infections; D006801:Humans; D007258:Informed Consent; D007407:Interviews as Topic / Q000379:methods; D010597:Pharmacogenetics / Q000941:ethics*; D010817:Physician-Patient Relations; D011795:Surveys and Questionnaires