Governing the Genome
Whether it's the White House's widely publicized concern for the Catholic vote in key electoral states in making its stem-cell decision, or NIH scientists providing the White House with a politically acceptable but false count of viable stem-cell lines, or Bristol-Myers Squibb's saturation advertising campaign with Tour de France champ Lance Armstrong touting the day when we will all be carrying our complete genetic information on a card, what's depressingly clear is that the political, market and media forces so familiar to us are now shaping the future of the human genome.
But other forces are beginning to come into play. The cloning controversy in particular has been serving as a surrogate battle for those who oppose human genetic engineering, led by Leon Kass, the President's bioethics adviser. Kass argued in print just this past May that although the public demand for cloning is extremely low, and most people are decidedly against it, the battle over cloning is a "unique practical opportunity" to combat "the impending prospects of germline genetic manipulation or other eugenic practices." Kass invoked the brave new world image to recommend a ban on embryo cloning, even cloning for research purposes.
This is the mindset that has impelled some progressives to make common cause with House majority whip Tom DeLay and the pro-life forces who want to ban embryo research cloning. Their political calculation, explicitly expounded by Kass and others, is that by focusing on as unpopular a prospect as human cloning, they can seize control of critical portions of the biomedical agenda, constrict its inquiries, alter the pace of biotech developments and provide a precautionary pause during which more extensive, global prohibitions can be put into place. In doing so, they aim to prevent a future of reproductive eugenics, in which selection of genetic traits occurs in conjunction with technically assisted reproduction procedures.
In particular, they view the refining of embryo cloning techniques as a crucial technological bridge to human genetic engineering that should be blocked. Cloned embryos are viewed as the basic material that would permit the necessary genetic manipulations prior to reproductive use. As "end of history" social theorist Francis Fukuyama recently expressed it, "The real problem is that human cloning constitutes the opening wedge for human genetic engineering."
Whether or not these advocates of a roadblock are correct in their tactics is questionable. Certainly there is validity to the view that the line between basic and applied research in the life sciences is porous: Identify a gene, and you've identified a test for that gene. But any effort that requires a government-mandated dissolution of basic scientific inquiry poses serious moral questions and its own set of social hazards.
Formulating a progressive position on governing the genome--one that defends basic scientific research, prevents the misuse of genetic technology and upholds the right of individuals to genetic justice and genetic privacy--will be difficult. The single reform that would be most meaningful in removing the incentives for genetic discrimination is hardly ever mentioned anymore: a system of universal healthcare. With so much of insurance responsibility placed on employers, we now guarantee that insurers and business management will engage in genetic discrimination as a matter of fiduciary responsibility.
Another reform demanding immediate attention is regulation of the fertility industry, now regarded as the Wild West of medicine. Some contend that the current state of genomic science does not yet allow anyone to know precisely what limits should be appropriately placed on those who utilize reproductive technologies for genetic alterations or enhancements. But surely the first step is to create oversight and collect the data that would allow us to begin such considerations.
If we wish to stand by our democratic belief in the right of people to participate in choosing their destiny, the most pressing task is to educate the public and its elected representatives. Perhaps this could be conscientiously approached with the help of a body composed of genuinely independent experts and public representatives, funded by major foundations. Such a body would not be an ultimate solution but rather would provide a focal point and a voice that could counterbalance the commercial forces that increasingly dominate the biomedical establishment and our legislative bodies. Undertaking a grassroots campaign in every Congressional district in support of Eric Lander's proposed ban on germline manipulation could be one powerful educational force.
America's last dalliance with eugenics, including a leadership role played by many progressives, resulted in the forced sterilization of tens of thousands of people, restrictive immigration laws and promotion of a racist mythology. These measures found an admiring, envious group of scientists in 1930s Germany. But back then there was an ill-founded notion that some sort of immutable "germ plasm" determined heredity. With the actual molecular basis of heredity coming into our hands, how shall we govern the genome? Will we once again fall prey to some ideological fad that becomes translated into a thinly justified biomedical intervention? Or, as founding genome project bioethicist Eric Juengst worries, could we get everything "right," and still end up with a society that none of us would wish to live in? Or will it be, as geneticist J.B.S. Haldane foresaw seventy-five years ago, that "the tendency of applied science is to magnify injustices until they become too intolerable to be borne, and the average man, whom all the prophets and poets could not move, turns at last and extinguishes the evil at its source"? Whether the source of "evil" is identified as existing in the technology or the social conditions under which it is applied is the question that progressives, and all humanity, will need to address.