CAREB Keynote: Technology, Values & Ethics Review

This morning I gave a keynote address at the Annual Meeting of CAREB (the Canadian Association of Research Ethics Boards) in Vancouver.

The title of my talk was “Shifting Technology, Shifting Values: New Challenges in Research Ethics.” The basic idea was this. Technology — by definition — lets us do new things, and so presents us with new choices. We make those choices, and engage in evaluation of new technologies, based on what we value and what we don’t. So, values play a role in how we think about technology.

But technology also stands to influence what we value. For example: the availability of new reproductive technologies make pre-implantation genetic screening less “unthinkable” than it once was. (I owe that example to Daniel J. Kevles). Or consider how our values related to privacy are likely to shift — maybe already are shifting — in response to increasingly pervasive surveillance technologies.

So, there’s a loop, or cycle: we use our values to evaluate new technologies, but new technologies seem capable of changing what we value.

Shift focus, now, to biomedical research. Consider how the availability of at-home genetic testing puts pressure on values related to genetic privacy. And think about how social networking sites like Facebook and MySpace are (probably?) changing how people (especially younger people) think about personal privacy. Now consider the way those 2 technologies are being combined: witness the 23andMe Facebook fan-page, where personal genomics ‘fans’ chat about the results of their gene tests. That’s pretty far (for better or for worse!) from the “old days” (about 5 years ago) when the results of a genetic test would only be discussed between you & your physician or genetic counsellor, and maybe very close family.

What does this imply for the work of Research Ethics Boards? REB’s are part of the tech/value cycle I described above. REB’s, informed by social values, evaluate the use of new technologies in research projects. But those new technologies in turn affect social values. So, I suggested this morning, REB’s need not just to keep up to date on new technologies, but also need to be aware of technology-induced changes in social values.

One thing I wasn’t sufficiently clear about this morning: I’m not at all saying that REB’s should simply soak up changes in social values: the fact that some people with Facebook accounts seem to care surprisingly little about privacy is not a reason to cast privacy to the wind. My point is merely that ethics review needs to be cognizant not just of our long-term value commitments, but also of current trends, even if only to guard against the pernicious effects of those trends.

~ by Nancy Walton on May 2, 2009.

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