Capital Report: Whither the ELSI Program?

Abstract

An issue that at least some involved in the Human Genome Project hoped would die a quiet death last year has resurfaced this fall on Capitol Hill. A congressional committee is calling for the establishment of an independent commission to oversee the ethical, legal, and social implications of this $3 billion, fifteen-year project, jointly funded by the National Institutes of Health and the Department of Energy--specifically, to develop policies to govern the use of genetic information. The only problem with this proposal is that such a program, known as ELSI, already exists, firmly embedded within the Human Genome Project and receiving roughly 5 percent of its total budget--some of which Congress would like to take away for this new commission. This proposal, resurrected in an August letter from Gary Condit (D-Calif.) to the secretaries of HHS and DOE, is just one indication that the ELSI program is at a critical juncture. Concedes Eric Juengst, director of the ethics program at NIH: "ELSI is at a transition point. It is vulnerable because the program has spent $20 million over the past four years, and a natural question is, What do you have to show for it?" Indeed, not just Congress but numerous critics, including genome scientists and public interest groups, have variously charged that ELSI is not independent enough to serve as a watchdog for the genome project, lacks necessary clout to formulate much-needed policies relating to the use of genetic information, and has largely shirked the important task of educating the public about the promise and perils of the new genetics. Complicating matters, it seems that everyone has a slightly different take on just what ELSI ought to be doing. No one wants to shut it down--the House proposal would simply move the policymaking function out of ELSI to a higher-level commission, leaving its research and education program in place. But whether such a move is a good idea and what ELSI should do meanwhile are now the subject of considerable debate. A report by the House Committee on Government Operations, a subcommittee of which held hearings on ELSI last year, concluded that ELSI, though sensitive and well-intentioned, does "not have the ability to present policy recommendations to the Nation, or Congress, or the executive branch in an effective manner. There is no existing policy process that will use the results of ELSI research to make recommendations." Specifically, says one Hill staffer, ELSI is so low in the agency structure that even if it did make some policy recommendations, they would have to wend their way up through "97 levels of bureaucracy," and all the substance would be "sucked out of them" in the process. …