GReCSS, Centre Norbert Elias, UMR8562, Aix-en-Provence, France.
Soc Sci Med. 2012 Sep;75(5):873-82. doi: 10.1016/j.socscimed.2012.04.022. Epub 2012 May 17.
Disclosing overall scientific results to clinical trial participants has become an ethical obligation. Here we studied how participants understand these results in view of their experience of clinical trials and illness in general and what modes of disclosure they preferred. Interviews were conducted with 29 breast cancer patients in France during 2009, using an in-depth qualitative approach. The findings obtained show that the "results" of research are understood quite differently by various patients depending on their expectations about clinical trials. Most of the women interviewed expected to receive personally tailored results at an individual encounter with their own clinical oncologist. Their preferred mode of disclosure was a consultation with their doctors because personal encounters promote mutual recognition and set up a symbolic process of exchange. The results of this study show that medical interventions should not be regarded solely from the technical point of view, but also in terms of the social relationships involved.
向临床试验参与者公开总体科学结果已成为一项道德义务。在此，我们研究了参与者如何根据他们的临床试验和一般疾病经验来理解这些结果，以及他们更喜欢哪种披露模式。2009 年，我们在法国对 29 名乳腺癌患者进行了访谈，采用了深入的定性方法。研究结果表明，由于对临床试验的期望不同，不同的患者对研究的“结果”有不同的理解。大多数接受采访的女性期望在与自己的临床肿瘤学家的个人会面中获得个性化的结果。她们更喜欢的披露模式是与医生进行咨询，因为个人会面可以促进相互认可，并建立一种象征性的交流过程。这项研究的结果表明，医疗干预措施不应仅从技术角度来看待，还应从所涉及的社会关系角度来看待。
