Monday, April 01, 2013

The ethics of disseminating research results

Article 33 of the Declaration of Helsinki (2008) reads:

At the conclusion of the study, patients entered into the study are entitled to be informed about the outcome of the study and to share any benefits that result from it, for example, access to interventions identified as beneficial in the study or to other appropriate care or benefits.

As usual with ethics guidelines, they do not come with practical guidance. So how, in concrete terms, do you best carry out this ethical requirement? What if fulfilling this requirement actually involves risks to participants? And do you have to only disseminate at the conclusion of the study?

There is an interesting recent article in PLoS Medicine on this topic. In part, researchers were provoked to disseminate results back to participants in a longitudinal observational HIV treatment study, when a participant said: "You have been asking me questions and taking my blood for years, but I do not know anything about what you have found." Acting on this remark while the research is still ongoing seems to have taken the research team -- and the participant community -- on a challenging but very positive journey. Dissemination of research means translating them in two ways: from the dominant scientific language (English) into the local language, and translating technical terms into more accessible ones to those without extensive formal education. Bringing HIV positive persons in a research study together at the same event poses potential issues of stigma and loss of confidentiality, and subsequent involvement of ethics committees. And the format of dissemination has to be culturally appropriate: powerpoint slides and handouts are not going to do it. In the dissemination event described in the article, everything seems to have gone as it should among researchers and participants, resulting in a greater understanding of and respect for one another. This is an embodiment of what the 'ethical conduct of research' means far beyond the usual fixation on the contents of consent forms.

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