Earlier this week it was a real pleasure to welcome to our studio Dr. Dan O’Connor, Head of Humanities and Social Science at the Wellcome Trust, along with our Mobile Health Meetup community, for the 5th in our series of events around digital health. Our focus: rethinking research ethics for digital health.
In the context of platforms such as PatientsLikeMe and Dementia Citizens, where patients are taking far more active and involved roles in scientific research, Dan proposed that we’re in a period of transitional justice. Traditional frameworks of ethics are perhaps no longer always appropriate: we shift from protecting participants from studies where they have little power and little say, to studies where participants are also researchers, with governing principles of solidarity, participation and openness.
The questions that it leads to are fascinating, and point to the myriad of complexities in this evolving landscape. If emerging ethical frameworks allow patients to lead their own research projects, will population samples become even more self-selecting than they are now? If the cultural norms of self-organised patient groups are based on open sourced communities, what kinds of biases are underlying their behaviour and decision-making, and what does that mean for the ethics of any research projects they take part in?
This and much more was discussed. We’ve tried to capture it all for those who weren’t there, so please do have a listen or a watch, below, if you want to delve in more. A very big thank you again to Dan and everyone for coming along and taking part in such a stimulating and thoughtful evening.
Our next meetup will happen over the next coming months, so join the community here) and watch this space!
#digitalhealth</p>— Ctrl Group (@ctrl_group) #researchethics</p>— Ctrl Group (@ctrl_group) September 19, 2016
What happens when line b/t researcher + subject blurs? #Apomediation— Ctrl Group (@ctrl_group) <a
Solidarity, participation + openness all key to facilitate #apomediation— Ctrl Group (@ctrl_group) @drdanoconnor #mHealthMeetup</p>— Ctrl Group (@ctrl_group) #digitalhealth</p>— Ctrl Group (@ctrl_group) #researchethics</p>— Ctrl Group (@ctrl_group) September 19, 2016
Huge thanks to @drdanoconnor <a
+ all who came to yesterday's #digitalhealth— Ctrl Group (@ctrl_group) #bioethics</p>— Ctrl Group (@ctrl_group) #mHealthMeetup</p>— Ctrl Group (@ctrl_group) <a
We hope you enjoyed as much as we did! September 19, 2016</blockquote>