I’ve written extensively recently about the value of our individual medical data to medical researchers, and indeed in a recent post covered a new paper exploring how we feel about this data being given up for research purposes.
The studies reveal a broad support for the use of personal data in health research, with respondents typically thinking that such work is in the public interest and therefore for the greater good. People would usually regard their data as being used in the development of new treatments or the improvement of services.
Indeed, in a number of studies, people expressed a degree of surprise that their data wasn’t being used for research already.
“Many studies reported that participants considered research uses of data to be in the public interest and conversely that not using data was against the public interest since this was a resource which should be used, not wasted,” the authors say.
Nevertheless, the issue of consent is complicated by the fact that many medical studies are conducted over a long time-frame, whereby samples and data are used and re-used many times, with them typically stored in ‘biobanks’ in the meantime. It begs the question of whether consent is required each time the samples are used, or whether a single consent covers all eventualities.
It’s a topic that was examined in depth in a recent study funded by the Wellcome Trust. The researchers quizzed a number of people who were participating in a longitudinal biobank. What did their analysis reveal?
As with the previous exploration of our feelings towards medical data sharing, there was a degree of nuance uncovered. What people believed requiring new consent was neither consistent or uniform. For instance, some would assess whether new research fundamentally altered the nature of the biobank and were therefore outside the scope of the original consent.
As with the first study I highlighted, ‘good faith’ was hugely important, as participants regarded themselves as entering into a cooperative bargain with the researchers. Re-consent was therefore a crucial safeguard in this bargain.
The thought processes typically deployed two distinct forms of logic however. Firstly, they used the logic of boundaries, which allowed them to test whether the new research deviated from the existing work they signed up for. Secondly, they used the logic of risk, whereby the new research was assessed to test whether it was a potential threat to either themselves or the research outcome they had signed up for.
If either of these triggered a perceived need for re-consent, then the participants believed there to be a need to re-actualize and renew the cooperative bargain afresh.
As the previous study also revealed, when we give up our data for medical research, we very much see it as a cooperative endeavor towards a mutually acceptable goal.
As such, the consenting agreements formulated as part of this should reflect the cooperative values that are so important to participants, whilst also recognizing the two key logics outlined above. They should also contain a level of flexibility to allow them to adapt to the changing needs of research but also the changing demands of participants.
The use of our medical data is likely to be increasingly common and crucial in the medical research process, so analyses such as this will be crucial in ensuring the process is managed appropriately.