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Working group roadmap: Social, legal and ethical issues
Barbara Evans, University of Houston Law Center
I am going to report on the ELSI group. I am speaking on behalf of the co-chair who is our ethics lead, who had to depart for Washington earlier today. We had 12 ELSI-interested people in our group today. We know others who were unable to attend. One of the needs in this effort is to have the ELSI group becoe more inclusie of members of the public-- because of broad claims about public engagement-- and have a more international view of ethics because the nations in this process have their own distinct ethics communities.
One thing we thought of is that we really salute the way this project sought early involvement of ethics including this and last year's meetings. One of the complexities of early involvement is to really define the ethics concretely when the scope of the science project is still being set. We like being involved early, even though it's hard to see what the specific ELSI issues will be.
Two aspects of ethics need to be recognized-- scholarly research and social implications and ethial implications from the scholarly view. There's also an important work like ethics governance; making sure projects are selected w.r.t ethics and that research is conducted in ethically compliant ways. So we feel a strong need to have ELISA to have close interface with other working groups like public engagement, governance group, policy group, IP group. I think one resolution we had is that it's really important for ethics effort to not be siloed. We need to reach out and stay in close contact with other working groups working in parallel.
We also recognize that the specific issues that the science will raise will depend on the scientific nature of their work-- agricultural endpoints, human xenotransplantation... to science matters, the funding source matters. NIH or NSF will have their own ethical requirements and it also matters the jurisdiction because different laws effect the ethical analysis, and institutional setting where there is an explicit ethics procedure that happens when research happens in an academic institution that may not be present in citizen science efforts.
In terms of how we get to the next step, we've been talking in large terms, it would be useful for the ELSI-interested working group to do a whitepaper in the fairly near future to try to say there's been a lot of relevant ethics work done in other projects like human genome project. Where does that stand today? Are there gaps that need to be addressed? What is the agenda?
We think there is an important first issue of what do we mean by human genome synthesis. It's sometimes hard to see how working with other species might be relevant to the efforts on humans. It would be useful to have a clear definition of what we mean by human and what are the points where ethical concerns do attach?
For a big sustained ethics research effort, that would need sustainable funding. What are the problems? That would help direct a more sustainable basis for the ethics group.
Thank you.
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