Anticipatory ethics and the problem of expectations
One of my favorite things about Canadian Stem Cell Network meetings (now renamed the Till and McCulloch Meetings) is the integration into the main programming of Ethical, Legal, and Social Issues (ELSI). It forces scientists to think outside of their own research and gives ELSI researchers exposure to the latest developments in stem cell biology. This year has been no exception and two things that rose to the top for me were a call to pursue “anticipatory ethics” and the problem with expectations.
First, a juggernaut in the field of stem cell ethics, Bartha Maria Knoppers, gave a wonderfully inspired talk on building stem cell research into a common public good. She referred to examples of common tools, biobanking, and standards for oversight and accountability to make the case for building the “infrastructure” of science. More practically, though, she stressed the importance of forward planning and this is where the concept of anticipatory ethics came up.
Knoppers asserts that while reactionary ethics are the typical standard (i.e.: something bad happens, let’s make some rules so it doesn’t happen again), anticipatory ethics is much more dynamic and prospective. It requires a strong trust relationship, which must be actively cultivated in order to steer the science earlier (and get a better, more agreeable, set of regulations in the end). She calls for a revolution where a scientific community works together in advance to build a normative model that has gone through filters inside and outside of the field before implementation (and not driven by the need to have a rule in place with immediacy). Following the talk, Michael McDonald stressed the importance of building in feedback. How were individuals and populations affected in post-implementation? There is a deep need to build it into the governance, otherwise it will quickly be out of touch with social need — it must revisit and change over time. In my opinion, it is exactly this sort of dialogue at a science meeting that will build the trust and inspire the participation needed.
Secondly, Tania Bubela from the University of Alberta spoke about her research on the large gulf between expectations for stem cell research between the public, patients, and policy makers and the reality of the science. The expectations are being built up not just by news agencies but are also cropping up in mainstream media — including Grey’s Anatomy, which has introduced regenerative medicine (artificial hearts and bones) and cell therapy (islet cell growth and transplantation) as though they were right around the corner. Bubela’s group has undertaken extensive analysis (text mining, longitudinal studies, etc) of news/research articles and clinical trials in order to measure the discrepancy between what is talked about in the media and what is being researched and tested in clinic. It was interesting to hear that huge amounts of ink have been spilled on neurological disorders and the potential of stem cells to cure them (likely due to celebrity endorsement) compared to the cell types being used in clinical trials (mostly mesenchymal and blood stem cells).
One question I’ve always had about such “expectation vs. reality” talks is why researchers never seem to quantify actual public expectations. In my own experience, it seems that outside of patients/families who are directly interested (and often desperate), the public has a pretty good understanding that scientific research takes a long time and are as concerned about safety as they are about speed — could this be a case of the media hyping an “expectation hype” that isn’t actually present? I’d love to see the data on that or hear from blog readers.
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