Communication of pharmacogenetic research results to HIV-infected treated patients:: standpoints of professionals and patients
Communication of pharmacogenetic research results to HIV-infected treated patients:: standpoints of professionals and patients
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DOI：
10.1038/sj.ejhg.5201450
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发表时间：
2005-09-01
影响因子：
5.2
通讯作者：
Leport, C
中科院分区：
文献类型：
--
作者：
Moutel, G;Duchange, N;Leport, C
药物遗传学研究的目的是使治疗策略适应个体的遗传特征，从而使其疗效最大化，并将不良副作用的可能性降至最低。自个性化医学出现以来，向参与者传达研究结果的问题变得越来越重要。我们在艾滋病毒感染的背景下解决了这个问题，因为患者和协会特别关注研究和治疗方面的进展。我们探讨了在一组HIV感染患者中进行的药物遗传学研究中研究专业人员和参与者的立场。研究方案的设定被跟踪了两年多的时间。参与者的观点是通过问卷收集的，并与研究专业人员进行了访谈。在125名参与者中，76%的人希望收到个别结果，71%的人希望收到集体结果；39%的人不知道什么时候可能会有结果。全球研究成果的交流是专业人士普遍接受的原则。关于个人反馈，专业人士认为，如果对参与者有直接好处，就有必要这样做，但他们对没有确认好处的情况表示怀疑。我们的结果强调了更详细地考虑这一问题的必要性。我们建议，有必要预见关于个人反馈的辩论，区分不同的情况，以及进一步调查交流机会和方式的重要性。最后，我们的工作强调了追求科学知识和临床试验的治疗导向之间的相反压力。
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.