Ethics and sequestering

As some of you may know, I moonlight as an ethicist  – which makes me an expert in the world of ethics of HSSE (because basically there is only me). Because there are so few people who actually know about both computer science and ethics, I was invited to be the NSERC respresentative on a Canadian national committee whose goal is to evolve the Tri-council Policy Statement which is the policy statement that governs all research involving humans. Basically, everyone at universities in Canada who do research with human subjects from sociologists to medical doctors must abide by the policy statement.

To make a long long story short, I am working with Judith Abbott to write the white paper on continuing ethics review. We wrote the original paper and just got comments from the public consultation. For the last two days, we have been sequestered in a dark room deep in the recesses of NSERC to address these comments.

Actually, I personally have a somewhat radical view of research ethics. Most of the time, I just believe you should give the subjects adequate information to judge the risks involved in participating in the research and then let them decide. Somehow, sometimes the whole research ethics board infrastructure seems somewhat paternalistic. But that being said, I guess, we need to ensure that researchers really do understand both the principles and practices surrounding the conduct of ethical research.

Anyhow, this post was really about being sequestered in a room with Judith for two days to polish off our consultation document based on the comments we received. We got pretty far. Most of the comments were quite positive, but some very negative, questioning in fact the need for ethics review at all. These comments typically come from people involved in the social sciences and humanities, primarily psychology. I certainly understand the frustration. Sometimes it appears to me that having only one document to address both SSH research and biomedical research is problematic. Anyhow, the new OER document is different, and we have made some recommendations on how to evolve the TCPS, including the mandatory reporting of changes to research and the reporting of unexpected events. I’ve probably already revealed too much, but if you are interested, I’ve authored a few papers, and certainly the PRE website has lots of information. Now the uber-committee will have to decide what to do with our recommendations. The new version of the TCPS is due in September.

Gotta say one thing though, sometimes I think of the TCPS as the bible, and we should only interpret it, not evolve it : )