Announced at the end of April but receiving a suprisingly small amount of press thus far, NIH has awarded a group at Case Western University a $772,500 grant to develop ethical standards for genetics enhancement research. Professor Maxwell Melman will lead a team of "law professors, physicians, and bioethicists" in sorting through guidelines and considerations for future investigations and trials. Correct me if I'm wrong, but to my knowledge the Case Law grant representsthe first significant NIH funding of any overtly genetic enhancement-related research program.
From the original Medical News Today announcement (also reproduced on the Case Law website):
Over the past half-century or so we have developed elaborate rules protecting human subjects in medical testing," Mehlman said. "The problem is that the rules were all designed with therapeutic goals in mind. The question is, are these safeguards appropriate to govern testing for non-therapeutic enhancements, where the measurement and valuation of the benefits is different from therapeutic testing?" The project's specific aims are to:
- Identify the differences between genetic research performed for therapeutic purposes and research performed for enhancement purposes.
- Determine the conditions under which it would be ethical to conduct genetic enhancement research using human subjects.
- Determine whether existing rules meet the ethical conditions for performing genetic enhancement research, and if they don't, recommend changes to the existing rules.
The media response? Not much so far, but what's there is fierce. The conservative Center for Bioethics and Human Dignity has labeled the project "state-sponsored liberal eugenics" and takes the opportunity to remind us, "When men play God, they play God badly."
Says Mitchell and Hook of the CBHD:
...Just because some unscrupulous scientist may perform human enhancement experiments does not mean we need a regulatory regime in place so the government can do so. We need to draw a line in the sand and say, “Not beyond therapy! Make no mistake about it; so-called enhancement is merely a desire to re-engineer the human person either for the sake of competitiveness or out of a vile self-loathing of one’s finitude and limitations.
This grant does not merely cross a moral line in the sand, it uses your tax dollars and mine to demolish a brick wall 10-feet wide, turning it to rubble. We must protest the use of our tax dollars for genetic enhancement research of any kind.
A replica of CBHD position statement was reposted under Ben Mitchell's name in the May 4th Baptist Press with the following remarkably unsubtle headline: "NIH Eugenics Project a Flashback to Nazi Research."
It would have been fantastic to see the CBHD issue a thoughtful, nuanced analysis of the implications of NIH funded genetics enhancement guidelines research. Certainly, the Case Law grant does likely signal NIH’s willingness to steer funding towards genetics enhancement research once guidelines have been established – seemingly rather sooner than later – and this is newsworthy. The distinction between “therapy” and “enhancement” in applied technology work is such a hotspot of debate, particularly when we have to consider that government health service involvement in enhancement research might be on its way. I'll be quite curious to read the recommendations the Case Law group produces.
As is, the CBHD merely adds fuel to the fire for those who dismiss reservations about enhancement technologies as hysterical whistleblowing. And, unfortunately, it only further polarizes discussion about an issue that ought to be receiving careful and composed scrutiny from the bioethics community.
I’d love to hear that community’s responses to the Case Law funding. Please comment!
--C.C.