Communication of pharmacogenetic research results to HIV-infected treated patients: standpoints of professionals and patients View Full Text


Ontology type: schema:ScholarlyArticle      Open Access: True


Article Info

DATE

2005-06-15

AUTHORS

Grégoire Moutel, Nathalie Duchange, François Raffi, Lama I Sharara, Ioannis Théodorou, Violaine Noël, Sandrine de Montgolfier, Ingrid Callies, François Bricaire, Christian Hervé, Catherine Leport

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. More... »

PAGES

1055-1062

References to SciGraph publications

  • 2005-01-13. Stored tissue samples: through the confidentiality maze in THE PHARMACOGENOMICS JOURNAL
  • 2001-04. Ethical considerations in PHARMACEUTICAL MEDICINE
  • 2003-09-26. Risk communication strategies: state of the art and effectiveness in the context of cancer genetic services in EUROPEAN JOURNAL OF HUMAN GENETICS
  • Identifiers

    URI

    http://scigraph.springernature.com/pub.10.1038/sj.ejhg.5201450

    DOI

    http://dx.doi.org/10.1038/sj.ejhg.5201450

    DIMENSIONS

    https://app.dimensions.ai/details/publication/pub.1043285003

    PUBMED

    https://www.ncbi.nlm.nih.gov/pubmed/15957002


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    22 schema:description 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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