Critical assessment of the impact of ELSI programs

Jon Umerez
University of the Basque Country

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     Last modified: June 7, 2005
     Presentation date: 07/14/2005 9:15 AM in MACK 238
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Abstract
In this paper I try to assess the role that contributions from what we may generically designate as ELSI (Ethical, Legal, and Social Implications) Approach might have on the issue of governing Biotechnology.
I contend that this sort of work has undoubtedly a significant impact on the public understanding of biotechnology but also manifests some limitations, which I consider inherent, and that hinder somehow its possibilities to effectively influence policies or the very directions of scientific research.
First, I will try to delimit what kind of research might the ‘ELSI approach’ label designate. In order to do that I will briefly describe the history and objectives of the original ELSI Program, established in 1990 by the National Human Genome Research Institute, of the U.S.A., “as an integral part of the Human Genome Project (HGP)”. I will review its foundation, goals, areas of research and current claims and evaluation (Collins et al. 1998).
From this, I intend to generalize a broader perspective, both institutionally (not only the US HGP) and regarding the subject matters (including other aspects of the new biotechnologies as well, besides the mapping of the human genome).
Once we have this, it will be possible to attempt an assessment of this approach.
In this respect, I would note, in the positive side, the extent of issues considered, the timeliness of its launching, its plurality of philosophical perspectives and the fact of being funded by the very institutions promoting the scientific research.
On the other hand, I would mention, as limitations, the fact that we are considering ‘implications’, (i.e., a post-facto, post-science, questioning), the limited impact of its results, the existence of excluded areas, and, finally, the promotion (more or less consciously) of a kind of “ethicization” of the issues.
Next, I will try to define this phenomenon of “ethicization” and I will consider what I think are the risks of this last limitation, beginning with the fact that many usual questions fall beyond the ethical field (Barden 1997), and following with its tendency to exclusiveness, letting aside other important aspects, to finish with the possible consequence of providing a shift from pre-existent serious ethical questions.
Finally, I claim that it would be necessary to widen the spectrum of problems making it more plural as to explicitly include epistemological aspects. Aspects related, mainly, to the elucidation of the nature and contents of scientific knowledge as well as to the evaluation of the degree of responsibility taken on by researchers.


References:
Collins, F.S., et al. (1998) New Goals for the U.S. Human Genome Project: 1998-2003. Science 282: 682-689.
Barden, Garrett (1997) De la Acción Moral a la Theoria Etica. biTARTE, 5(13): 29–44.

Multiple Paper Session:
Other papers in this session:
The First Clone War: Creating a National Recombinant DNA Policy in the United States
The Politics of Mass Sterilization: Eugenics, Public Policy, and the Emergence of the Worldwide Population Control Movement
A New Approach to the Ethics and Public Policy of Biotechnology