Governing the Genome
If there has been a focal point of bioengineering concern for scientists, it has been the genetic engineering of the human germline--alteration of the reproductive cells or the tissues that produce them such that any genetic changes will be passed on to all future generations, a prospect that Britain's leading science journal, Nature, recently called "biology's last taboo." Germline engineering has already been done with mice and other mammals, with whom we share a considerable part of our genetic heritage. While the efficiency is still far too low to even consider using similar techniques on humans, scientists express no doubt that it is simply a matter of time and effort before we get there.
Certainly Eric Lander, the director of the genome center at MIT's Whitehead Center, believes so. Just weeks before the June 26, 2000, White House announcement of the finished draft genome sequence, Lander called for a ban on human germline engineering. "Already there are well-meaning discussions about improving the human DNA," he warned his audience. "I find this somewhat hubristic myself. It's been 3.5 billion years in the making. We've been able to read it for the last, oh, I don't know, year or so. And we suddenly think we could write the story better? It's very amusing." Added Lander, "I would have a ban in place, an absolute ban in place on human germline gene therapy. Not because I think for sure we should never cross that threshold, but because I think that is such a fateful threshold to cross that I'd like society to have to rebut that presumption someday, to have to repeal a ban when it thought it was time to ever try something like that."
In part, Lander was responding to the enthusiastic support for germline engineering expressed by a group of his fellow biologists at a UCLA conference two years before. "Evolution can just be damn cruel, and to say that we've got a perfect genome and there's some sanctity? I'd like to know where that idea comes from, because it's utter silliness," declared the cold-eyed, ever-provocative Nobelist James Watson at the time. Watson had no doubt where the real ethical dilemma lies. "Some people are going to have to have some guts and try germline therapy without completely knowing that it's going to work.... The biggest ethical problem we have is not using our knowledge...people not having the guts to go ahead and try and help someone." At the June 2000 press conference, I asked Watson what he thought of his friend Lander's proposal for a statutory ban on germline engineering. "Disaster," he spat back without hesitation. "It's germline, if anything, that one day will save us." Save us from what? "Oh, something like AIDS," he suggested.
Last fall a working group convened by the American Association for the Advancement of Science (AAAS) weighed in, agreeing with Watson on his antimystical view of the genome but aligning itself with Lander's perspective on the need to impose an obstacle to proceeding until we as a society have made a conscious choice to do so. What institutional body should make the decision to go ahead or not was left open by the AAAS working group. They could not reach agreement among themselves. Currently, the Recombinant DNA Advisory Committee (RAC) has authority over publicly funded gene experiments, and has so far refused granting permission for anything involving germline engineering.
But scientists or clinicians operating outside of public funding or publicly funded institutions are under no obligation to bring their procedures before the RAC for approval. So it came as no surprise when a New Jersey fertility clinic this past May announced that it had developed and performed an in vitro fertilization procedure that inadvertently resulted in the newborns having genes from three adults--and that this new genetic hybrid was evidenced in all the cells of the babies, including their germline cells. For now, the Food and Drug Administration has stepped in to declare the clinic's fertilization procedure as coming under its authority and only to be used with FDA approval.
That in no way, however, addresses the more encompassing scenario of parents beginning to select genetic traits at the embryonic stage. Already, negative selection is performed at fertility clinics where embryos undergo pre-implantation screening for disease genes. Eventually, most believe, this will be expanded to include positive selection of genes for specific traits, and finally enhancement or alteration of genes. When this occurs, as in the New Jersey case, changes made to the embryo show up in all the developing organism's cells, including its germline cells. Whether it is Lander's call for an absolute ban, the AAAS recommendation of a moratorium or the demand by some for a permanent prohibition against germline engineering, an act by Congress will ultimately be required so that the private sector is covered as well.
The quandaries posed by genetic engineering stir the greatest concern when it comes to neurogenetics--alteration of those genes that are found to contribute to the complex traits we call intelligence or personality. At the July 1999 annual summer symposium on genetics held at the Jackson Laboratory in Bar Harbor, Maine, LeRoy Walters, the director of the Kennedy Institute of Ethics, urged the gathered geneticists to consider the possibility of establishing a base line for that portion of intelligence that is genetically determined. For anyone falling below the base line, he argued, government should guarantee access to neurogenetic enhancement to achieve the minimum. Otherwise, Walters warned, we stand in danger of identifying and dooming a new genetic underclass.
There are those who, while agreeing with Walters's assessment of the problem, vociferously argue against his proposed solution of a government genetic welfare program. Biomedical legal scholar Max Mehlman, director of the Case Western Reserve Law & Medicine Center, is one of them. "I hate to be hyperbolic," Mehlman says, "but I see this as the most fundamental challenge to our notions of humanity and society in our existence as a species. The possibilities range from creation of what I call a gene-nobility all the way to what some people predict are divergent intelligent species. That's not going to happen in twenty years. But, again, there's no technological impediment...to that happening in a few generations." Mehlman, who opposes any state control of genetics but also worries about an unregulated genetic market, proposes the opposite of a government genomic guarantee. Instead, in a paper written under a grant from the NIH human genome center and published last year in the Iowa Law Review, Mehlman has proposed an extensive system of universal genomic profiling under which genetic enhancements would be controlled throughout an individual's life. A genome profile taken at birth would be regularly checked to see whether enhancements had been performed. Genetic enhancements would be controlled just as narcotics are today. While acknowledging that such a future looks like a genetic police state, for Mehlman this remains a superior alternative to state-sponsored genetics or a society with a genetic underclass locked into eternal subservience by a ruling, self-perpetuating genetic aristocracy.