Ethics & Engagement across the Wellcome Trust Major Overseas Programmes
Hi every one, I hope you are all well! I am thinking of what are the best ways (methods) to present the research results to our research participants. Does any one has experience or know any resource that I can look into?
Hi Thuy! I've just sent out your question to the whole Network, so hope that you should get some answers soon!
Yes, I saw it. Thank a lot!
This is a very interesting question and one that all research projects that are face. I suppose the answer depends on the type of results or findings one is trying to feed back. Are they individual findings, are they clinically valid, do they reveal medical conditions, are these conditions treatable or untreatable, etc? And then, one needs to consider the ‘audience’ to whom you are reaching. Will it be possible to approach people individually (were the original sample de-identified, and is re-identification possible?), or at a community or population level? And also, what is the best way of communicating with the research participants? Local media, one-to-one meetings, community gatherings, email? There is enough literature out there discussing mainly the types of findings that project ought to return and some papers discussing methods. (e.g. Fernandez et al. 2003; MacNeil and Fernandez 2006; Chen et al. 2010; Fabsitz et al. 2010; Dixon-Woods et al. 2011). I have also contributed in this discussion with a paper in Developing World Bioethics entitled: ‘Sharing the Knowledge: sharing aggregate genomic findings with research participants in developing countries’, 2014. I hope you find these references useful. And if you have any further questions, or you’d like to discuss this further, I’d be more than happy to talk with you.
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