Human, Not So Human
April 26, 2000
"I'm not in the business. I am the business." -- Rachel, the genetically engineered human Replicant played by Sean Young in the film Blade RunnerMuch of the recent flurry of commentary on the successful cloning of a sheep in Scotland has focused on the challenge this technology brings to bear in our understanding of what makes a human being human.But the practical consequences of this question have been avidly debated for some years now by scientists, bioethicists, academics and others engaged in pondering the implications of the Human Genome Project, which is due to complete decoding the human genetic blueprint by the year 2005.These concerns were recently given voice at a conference of international bioethicists in November. If anything, the advances in cloning technology should give only more credence to their deliberations and greater urgency for public attention to their discussions, as reported below.There were scant few members of the media present, but the moment seems worth recording, if only as a minor footnote to the future history of a species once known as human.The occasion was the III World Congress of Bioethics, conducted in San Francisco at the end of November. Amid the concurrent plenary and panel sessions was a daylong program on "Genetic Testing for Breast Cancer Susceptibility," sponsored by Stanford University.Presentations on the current status of the genetics of breast cancer, and Myriad Genetics Laboratories' plans for marketing breast cancer gene test kits, revealed the growing crisis of genetic diagnoses: Although mutant genes (ones that can predict a higher risk for breast cancer) can now be located, there is no medical consensus that identifying the genes can actually benefit the patient by preventing or curing the cancer. Whereas companies like Myriad foresee a potential multibillion-dollar market in commercialized genetic testing, research scientists perceive a vulnerable public being provided with information that may do more harm than good.But it was the remarks of a series of speakers at the beginning and end of this discussion that opened a window on the future contours of the social and political landscape created by genetic technology.* Welcoming the audience was Dr. Gene Bauer, dean of the Stanford School of Medicine. Heralding the arrival of "a post-Darwinian era," in which human choice would replace natural selection as the governing force of evolution, Dr. Bauer explained: "We have the capacity to manipulate life-forms. We have the capacity to create life-forms. We have the capacity, both through omission and commission, to exert massive changes on the world's biodiversity. And we must acknowledge that both the magnitude and the pace of [genetic] technology will test our wisdom to its limits."* The next speaker was the Chief Executive Officer of SmithKline Beecham, the global pharmaceutical giant and corporate sponsor of the Stanford program. A dapper and well-spoken Dane, CEO Jan Lecshley highlighted a "complete paradigm shift" in the creation of new drugs during just the past five years. Whereas previously researchers would discover the function of a biochemical system and then attempt to analyze the underlying genetic structure, "we are now drowning in structures and trying to find the function. This is a revolution," Leshley explained.The result: "New drugs will be coming out at a rate we've never seen before." And so, Leshley concluded, "For the first time in 30 years that I've been in the pharmaceutical industry, I am recommending regulation."* Later in the session, the nation's most renowned bioethicist, Dr. Arthur Caplan, made this proposal: "I believe that the [genetics] field -- if it is about to uncork the genetic genie from the bottle, if it really is going to say that the time for the genetic revolution is upon us -- has an obligation to say -- 'There will be no genetic testing of children, fetuses or embryos, unless and until such time that there is privacy protection assured for all Americans; and no underwriting [insurance discrimination]. There is no reason not to link the availability of this technology for those who want it to public policies that demand, insist and make [social protections] a precondition ...That is when the revolution will begin."* At lunch, Dr. Francis Collins, director of the National Center for Human Genome Research, the federal entity that is decoding the entire human genetic map, weighed in with his support for Caplan's suggestion of linkage: "I really liked the notion that maybe we should just stop doing everything and insist that Congress solve this [problem of genetic discrimination] or we're not going to go forward on any front."What's going on here? A medical dean speaking of a post-Darwinian era; a multinational corporate CEO advocating government regulation; an academic recommending that genetic technology be taken hostage until certain social policies are in place; the director of the nation's leading scientific program suggesting a research strike until Congress enacts specific legislation?These are just some of the strange metamorphoses wrought by the arrival of human genetics.One the one hand, it must be admitted that the above perspectives arises from the pragmatic needs of the medical research and biotechnology industries. Dr. Collins admitted as much: "One of my fears," he told the group, "is that we will commit enough egregious errors early on in this process that the American public will be totally turned off and will decide that they don't want anything to do with this genetic technology because it has more harms associated with it than benefits."But it must also be understood that some of the above concerns grow out of history. The conference occurred on the eve of the 50th anniversary of the Nuremburg trials of the Nazi doctors.In fact, the day before their breast cancer session, a plenary panel presented the evidence of biomedical crimes committed by various nations. Most revealing for Americans was the talk given by a Chinese doctor on the Japanese biological experiments on Chinese and American prisoners of war during World War II. After the war U.S. General Douglas MacArthur struck a bargain with the Japanese doctors: Give us the test results of your inhuman experiments, and we will forego prosecution of you. The deal was made. There is some suspicion that these results found a testing ground in the Korean War a few years later.But not all biomedical crimes have been committed in the distant past. A later session described some of the contemporary scandals that have broken out at American university medical schools and hospitals, including last year's embryo implantation violations at UC Irvine.So it was against the background of this history that on the very first day of the Congress there occurred the International Bioethics Summit of National Bioethics Advisory Bodies. In a scene reminiscent of the most elaborate international diplomatic negotiations, the representatives of more than 50 countries, from Slovenia to South Africa, meeting in a chandeliered ballroom around a large rectangular table arrangement, reported on their progress in establishing protections against genetic discrimination and misuse. Observing this session, it was easy to imagine that future debates at the United Nations might concern not the deployment of peacekeeping forces, but the disposition of aggression-related genes.During the course of these summit discussions, some of the differences in national approaches became apparent. For example, legislators in the United States have already ceded the ability of life insurers to use genetic information to deny coverage. In Japan, on the other hand, when someone tests positive for a genetic disease, they are immediately given insurance.The whole notion of a "bioethics" itself showed great national differences. A florid-faced Dutch philosopher standing outside the conference hotel smoking a cigar told me that in the Netherlands, there are no professional bioethicists. Instead, the training in medical ethics is given directly to the doctors, nurses and administrators. In Holland, separation of the caregiver from the ethics of care is perceived as a dereliction of care.Holding a bulging bag of books in his hand, with the 18th-century German philosopher Kant prominent in the titles, the philosopher told me, "Oh, yes, I am considered old-fashioned. I still think that there's something called a person."His remark underscored what seemed to be a visceral concern for most conferees. In the era of the emerging Biomedical State -- where researchers are worried enough and bold enough to openly suggest science and technology shutdowns to leverage government policy -- the question of what defines a human being has become quite central while the actual role of the human has become increasingly peripheral.Arthur Kleinman, a medical anthropologist from Harvard, used the conference as an occasion to make this point:"Ultimately what links [the concerns of] anthropology and bioethics is the loss of the human. Early in this century, Max Weber said that bureaucratic life would come to define our times; that it would replace sentiment, tradition and rule-of-thumb with an iron cage of [scientific] rationality that would disenchant us from the world."That has happened. Dehumanization is the nature of the social experience of institutional care, whether it's in the clinic or the hospital, whether it's for profit or nonprofit. Efficiency reigns supreme. Cost is more important than efficacy. The role of the anthropologist is to reinstill humanism; to bring the human back, to insist upon the human."Kleinmen continued: "Henry James wrote in 'The Middle Years,' 'We work in the dark. We do what we can. We give what we have. Our passion is our anxiety. And passion is our task.' Our passion is our anxiety because we carry with us powerful ideas and the potential for doing remarkable things with our technical training. But in the absence of a passionate commitment to reinstilling the human, there's very little that's there."Reinstilling the human is an inspiring and comforting thought. But which essential traits define the human is now precisely what is being called into question by the post-Darwinian era of genetic technology that would presume to save us.Upon release of the film Blade Runner 15 years ago, the above-quoted remark of Rachel the human Replicant mentioned at the beginning of this article, might have seemed a fanciful sci-fi witticism. Today, as the bioethics conference made clear, we know: This ain't no movie.