****************************** Subject: GENETICALLY ENGINEERED PEOPLE? (Loka Alert 7:2) ****************************************************** Please Repost Widely Loka Alert 7:2 (9 May 2000) Where Appropriate THE POLITICS OF GENETICALLY ENGINEERED HUMANS by Richard Hayes "Many people love their [golden] retrievers and their sunny dispositions around children and adults. Could people be chosen in the same way? Would it be so terrible to allow parents to at least aim for a certain type, in the same way that great breeders . . . try to match a breed of dog to the needs of a family?" --Prof. Gregory Pence, University of Alabama (1998) Friends & Colleagues: The technical ability to genetically modify the human species is advancing rapidly, and could easily outstrip societal wisdom and oversight capabilities. In this Loka Alert Richard Hayes offers a superb introduction to the science and politics of human genetic engineering. He concludes with action steps we must take to prevent dangerously irresponsible applications of the emerging human biotechnological know-how. * * * This is one in an occasional series on the democratic politics of research, science, and technology issued free of charge by the nonprofit Loka Institute. TO BE ADDED to the Loka Alert E-mail list, or to reply to this post, please send a message to . TO BE REMOVED from the Loka Alert E-mail list, send an E-mail with no subject or message text to . (If that fails, just notify us at ). IF YOU ENJOY LOKA ALERTS, PLEASE INVITE INTERESTED FRIENDS & COLLEAGUES TO SUBSCRIBE TOO. Thank you! Cheers to all, Jill Chopyak, Executive Director Richard Sclove, Research Director & Loka Alert Editor The Loka Institute, P.O. Box 355, Amherst, MA 01004, USA E-mail , Web Tel. +1-413-559-5860; Fax +1-413-559-5811 ************************************************************ CONTENTS (I) "THE POLITICS OF GENETICALLY ENGINEERED HUMANS" by Richard Hayes..................(7 pages) (II) ACTION STEPS, RESOURCES AND NOTES........(1-1/2 pages) (III) ABOUT THE LOKA INSTITUTE.................(1 paragraph) (IV) INTERNSHIPS AT THE LOKA INSTITUTE...........(1/3 page) *********************************************************** (I) THE POLITICS OF GENETICALLY ENGINEERED HUMANS by Richard Hayes Coordinator Exploratory Initiative on the New Human Genetic Technologies San Francisco, CA We are fast approaching what is arguably the most consequential technological threshold in all of human history: the ability to directly manipulate the genes we pass on to our children. Development and use of these technologies would irrevocably change the nature of human life and human society. It would destabilize human biological identity and function. It would put into play a wholly unprecedented set of social, psychological and political forces that would feed back upon themselves with impacts quite beyond our ability to imagine, much less control. These technologies are being developed and actively campaigned for by an influential network of scientists and others who see themselves ushering in a new epoch for human life on earth. They look forward to the day when parents quite literally assemble their children from genes listed in a catalogue. They celebrate a future in which our common humanity is lost as a genetically-enhanced elite increasingly acquires the attributes of a separate species. There is little public awareness of the full implications of the new human genetic technologies or of the campaign underway to promote them. There are few popular institutions, and there is no social or political movement, critically addressing the immense challenges these technologies pose. If we are to have any hope of bringing human genetic engineering within the ambit of accountable societal governance, we need to move very quickly. We need national and community leaders, activists, journalists, scientists, scholars, and other citizens to inform themselves in short order about critical aspects of the new human genetic technologies, and to join together to begin building nothing less than a new social movement. The notes that follow address the science, history, accompanying ideology, and other aspects of the most critical applications of the new human genetic technologies. Resources for those who want to learn more or find out how they can join with others seeking to engage these issues are listed at the end. THE SCIENCE Some applications of human genetic engineering are benign and hold great potential for preventing disease and alleviating suffering. Other applications open the door to a human future more horrific than our worst nightmares. We need to be able to distinguish between these, and to support the former and oppose the latter. Genetic engineering means changing the genes in a living cell. If you have a lung disease caused by defective genes in your lung cells, for example, perhaps those genes can be changed and the disease cured. Researchers try to do this by putting healthy human genes into virus-like organisms that are injected into a patient's blood stream and travel to the lungs. The virus-like organisms insert the healthy genes into the lung cells containing the defective genes. That's genetic engineering. There are two very different applications of genetic engineering. One application changes the genes in cells in your body other than your egg and sperm cells. Such changes -- like those in the lung cells of our example -- are not passed to any children you may have. Applications of this sort are currently in clinical trials, and are generally considered to be socially acceptable. The other application of genetic engineering changes the genes in eggs, sperm, or very early embryos. These affect not only any children you may have, but all succeeding generations. This application is by far the more consequential, because it opens the door to the reconfiguration of the human species. The technical terms for these two applications are, respectively, "somatic" genetic engineering (after the Greek "soma" for "body"), and "germline" genetic engineering (because eggs and sperm are the "germinal" or "germline" cells). Many advocates of germline engineering say it is needed to allow couples to avoid passing on genetic diseases such as cystic fibrosis or sickle cell anemia. This is simply not true, and scientists and medical researchers who use this argument are betraying the trust that society grants them. More acceptable means already exist to accomplish this same goal. In the technique know as pre-implantation screening, for example, couples at risk of passing on a gene-related disease use _in-vitro_ fertilization to conceive several zygotes, and only those found to be free of the harmful gene are implanted and brought to term. No manipulation of genes is required. Germline manipulation is necessary only if you wish to "enhance" your children with genes they wouldn't be able to get from you or your partner. HISTORY The ability to directly manipulate the genes of plants and animals was developed during the late 1970's. Proposals to begin human gene manipulation were put forth in the early 1980's and aroused much controversy. A small number of researchers argued in favor of germline manipulation, but the majority of scientists and others opposed it. In 1983 an important letter signed by 58 religious leaders said, "Genetic engineering of the human germline represents a fundamental threat to the preservation of the human species as we know it, and should be opposed with the same courage and conviction as we now oppose the threat of nuclear extinction." [1] In 1985 the U.S. National Institutes of Health (NIH) approved somatic gene therapy trials, but said that it would not accept proposals for germline manipulation "at present." That ambiguous decision did little to discourage advocates of germline engineering, who knew that somatic experiments were the appropriate first step in any event. In the period following 1985, and especially following the first approved clinical attempts at somatic gene therapy in 1990, advocates of germline engineering began writing in the medical, ethical, and other journals to build broader support. In the mid- and late 1990's these efforts received several major shots in the arm. The ongoing success of the federally funded Human Genome Project in describing and locating all 80,000+ human genes fueled growing speculation about eventual applications, including germline engineering. The successful development in 1996 of the ability to create a genetic duplicate of an adult mammal ("cloning"), and in 1999 of techniques for disassembling human embryos and keeping embryonic cells alive in culture, were critically important. They made it possible, for the first time, to imagine a procedure whereby the human germline could be engineered in a commercially practicable manner. Advocates of germline engineering were further encouraged by the social, cultural and political conditions of the late 1990's, a period characterized by technological enthusiasm, distrust of government regulation, the spread of consumerist/competitive/libertarian values, and the perceived weakening ability of national governments to enforce laws and treaties, as a result of globalization. Advocacy of germline engineering moved to the status of an openly acknowledged political cause in March of 1998, when Gregory Stock, Director of the Program on Medicine, Technology and Society at UCLA (the University of California at Los Angeles), organized the symposium "Engineering the Human Germline." All the speakers were avid proponents of germline engineering. Stock declared that the important question was "not if, but when" germline engineering would be used. The symposium was attended by nearly 1,000 people and received front-page coverage in _The New York Times_, _The Washington Post_ and elsewhere. Four months after the UCLA conference one of the key participants, somatic gene transfer pioneer W. French Anderson, submitted a draft proposal to the NIH to begin somatic gene transfer experiments on human fetuses. He acknowledged that this procedure would have a "relatively high" potential for "inadvertent gene transfer to the germline." Anderson's proposal is widely acknowledged to be strategically crafted so that approval could be construed as acceptance of germline modification, at least in some circumstances. Anderson hopes to receive permission to begin clinical trials by 2003. A NEW IDEOLOGY Advocacy of germline engineering and the new "techno- eugenics" (i.e., technologically enabled human genetic manipulation and selection) is an integral element of a newly emerging socio-political ideology. This ideology differs from conservative ideologies in its antipathy towards religion and traditional social values, from left- progressive ideologies in its rejection of egalitarian values and social welfare as a public purpose, and from Green ideologies in its enthusiastic advocacy of a technologically reconfigured and transformed natural world, human beings included. It embraces philosophical, normative and political commitments to materialism, reductionism and determinism; to science and technology as autonomous endeavors properly exempt from social control; to the presumed priority of market outcomes; and to a political philosophy grounded in evolutionary psychology and social darwinist views of human nature and society. This ideology is gaining acceptance among scientific, high-tech, media and policy elites. A key foundational text is the book _Remaking Eden: How Cloning and Beyond Will Change the Human Family_, by molecular biologist Lee Silver of Princeton University. Silver looks forward to a future in which the health, appearance, personality, cognitive ability, sensory capacity and life-span of our children all become artifacts of genetic manipulation. Silver acknowledges that the costs of these technologies will limit their widespread adoption, so that over time society will segregate into the "GenRich" and the "Naturals" In Silver's vision of the future: "The GenRich -- who account for 10 percent of the American population -- all carry synthetic genes. All aspects of the economy, the media, the entertainment industry, and the knowledge industry are controlled by members of the GenRich class . . . Naturals work as low-paid service providers or as laborers . . . [eventually] the GenRich class and the Natural class will become entirely separate species with no ability to cross-breed, and with as much romantic interest in each other as a current human would have for a chimpanzee." Silver continues: "Many think that it is inherently unfair for some people to have access to technologies that can provide advantages while others, less well-off, are forced to depend on chance alone . . . [But] American society adheres to the principle that personal liberty and personal fortune are the primary determinants of what individuals are allowed and able to do. Indeed, in a society that values individual freedom above all else, it is hard to find any legitimate basis for restricting the use of repro-genetics . . . . I will argue [that] the use of reprogenetic technologies is inevitable . . . . [W]hether we like it or not, the global marketplace will reign supreme."[2] Silver is hardly alone. Here's James Watson, co- discoverer of the structure of DNA, Nobel laureate and founding director of the Human Genome Project: "And the other thing, because no one has the guts to say it, if we could make better human beings by knowing how to add genes, why shouldn't we? What's wrong with it? . . . Evolution can be just damn cruel, and to say that we've got a perfect genome and there's some sanctity to it? I'd just like to know where that idea comes from. It's utter silliness."[3] And here's Dr. Gregory Pence, professor of philosophy in the Schools of Medicine and Arts/Humanities at the University of Alabama: "[M]any people love their retrievers and their sunny dispositions around children and adults. Could people be chosen in the same way? Would it be so terrible to allow parents to at least aim for a certain type, in the same way that great breeders . . . try to match a breed of dog to the needs of a family?"[4] Or consider this excerpt from an interview with University of Pennsylvania bioethicist Arthur Caplan: "'[M]aking babies sexually will be(come) rare,' Caplan speculates. [M]any parents will leap at the chance to make their children smarter, fitter and prettier. Ethical concerns will be overtaken, says Caplan, by the realization that technology simply makes for better children. 'In a competitive market society, people are going to want to give their kids an edge,' says the bioethicist. 'They'll slowly get used to the idea that a genetic edge is not greatly different from an environmental edge.'"[5] Here's noted economist Lester Thurow of MIT: "Some will hate it, some will love it, but biotechnology is inevitably leading to a world in which plants, animals and human beings are going to be partly man-made . . . . Suppose parents could add 30 points to their children's IQ. Wouldn't you want to do it? And if you don't, your child will be the stupidest child in the neighborhood." [6] And here's Francis Fukuyama of the Institute for Public Policy at George Mason University and author of _The End of History_: "[B]iotechnology will be able to accomplish what the radical ideologies of the past, with their unbelievably crude techniques, were unable to accomplish: to bring about a new type of human being . . . . [W]ithin the next couple of generations . . . we will have definitively finished human History because we will have abolished human beings as such. And then, a new posthuman history will begin."[7] Can it get worse than this? Yes. In Germany last year an uproar ensued following statements by noted philosopher Peter Sloterdijk that the failure of "Habermasean social democracy" now leaves human genetic engineering (which he referred to as "Selektion," a word associated with Nazi genocide) as the only means for humanity to improve its lot. INSTITUTES OF INFLUENCE Supporters of human germline engineering and the new techno-eugenics have established a number of institutes that encourage public acceptance of their program. At UCLA the Program in Medicine, Technology and Society (MTS), noted above, is currently promoting the notion of aging as a disease that can be cured through germline engineering. The Extropy Institute, also in Los Angeles, supports "evolutionary advance by using technology." At their annual conference last year in Berkeley, the Extropy Institute held strategy sessions on how to organize politically to advance the post-human agenda, and on how to talk to the press and public about human genetic modification in ways that build support and diffuse opposition. In Maryland the Human Biodiversity Institute recently presented a seminar on the prospects for genetically modified humans at a Hudson Institute retreat attended by former British Prime Minister Margaret Thatcher. These institutes are small but growing. No comparable efforts are underway to counter their influence. BUSINESS INTERESTS The biotech industry is actively developing the technologies that would make it possible to offer human germline engineering on a commercial basis. This work is almost completely unregulated. Geron Corporation of Menlo Park, California, holds patents on applicable human embryo manipulation and cloning techniques. Advanced Cell Technologies (ACT) of Worcester, Massachusetts, announced last year that it had created a viable human/bovine embryo by implanting the nucleus of a human cell into the egg of a cow. No laws exist that would have prevented this trans- species embryo from being implanted in a woman's uterus in an attempt to bring a baby to term. The baby would contain a small but significant proportion of cow genes. Chromos Molecular Systems, Inc., in British Columbia, is developing artificial human chromosomes that would enable the engineering of multiple complex traits. People whose germlines were engineered with artificial chromosomes, and who wanted to pass complete sets of these to their children intact, would only be able to mate with others carrying the same artificial chromosomes. This condition, called "reproductive isolation", is the primary criteria that biologists use to classify a population as a separate species. OPPOSITION TO GENETICALLY MODIFIED HUMANS? Given the enormity of what is at stake, and the fact that the advocates of the new techno-eugenics are hardly coy about their intentions, it is remarkable that organized opposition has been all but absent. Why is this? In part it's simply that the most critical technologies have been developed only within the last three years or so, and there hasn't been time for people to fully understand their implications and respond. Also, the prospect of genetically engineering the human species is categorically beyond anything that humanity has ever before had to confront. People have trouble taking these issues seriously -- they seem fantastical, or beyond the pale of anything that anyone would actually do or that society would allow. As a consequence there exist no self- identified constituencies of concern, and no institutions in place to effectively focus that concern. Further, attitudes concerning human genetic modification don't fit neatly within the familiar political categories of right/left or conservative/liberal. The more useful set of categories is libertarian/communitarian. The libertarian right and libertarian left are typically less concerned about human genetic modification, which they can accept as a property right or as a personal right, respectively. By contrast, the communitarian right and communitarian left tend to be strongly opposed, the former typically for reasons grounded in religious beliefs and the latter out of concern for human dignity, social equity and solidarity. This unfamiliar alignment impedes quick and confident responses by opponents. Finally, although people intuit that the new genetic technologies are likely to introduce profound social and political challenges, they also associate these technologies with the possibility of miracle cures, notably for the many tragically fatal inheritable conditions. Before any sentiment in favor of banning certain uses of genetic technology can take root, people will have to come to understand that doing so would not foreclose means of preventing or curing genetic diseases. WHAT IS TO BE DONE? At the policy level we will need global bans on altering the genes we pass on to our children, and on reproductive human cloning. We'll also need effective, accountable systems for regulating human genetic technologies that may have some beneficent uses but could be dangerously abused. These policies and systems are already in effect in a number of major countries. France and Germany have banned both germline engineering and cloning, the Council of Europe is working to have these banned in all 41 of its member countries, and Canada is expected to ban germline engineering and cloning within a year. The United Nations, UNESCO, and the Group of Seven industrialized nations have called for a global ban on human cloning. Great Britain has a Human Fertilization and Embryology Authority (HFEA) which licenses all research and commercial enterprises whose activities involve use of human eggs, sperm or embryos. The HFEA is frequently cited as a model for other countries. If we are to realize such policies in the United States and worldwide, is imperative that strong, coordinated civil society efforts toward these ends be initiated, and soon. As noted, little infrastructure to support such efforts currently exists. We will need to establish national and global-scale education and advocacy organizations, research and media centers, and more. Success in adopting the policies described above will enable us to avoid the worst threats posed by the new human genetic technologies, and will allow us to better use our tremendous scientific and technological gifts in support of a healthy, sustainable and equitable human future. ********************* ABOUT THE AUTHOR: Richard Hayes -- E-mail -- is coordinator of the Exploratory Initiative on the New Human Genetic Technologies (see below). He formerly served as assistant political director and national director of volunteer development for the Sierra Club. ************************************************************ (II) ACTION STEPS, RESOURCES, and FOOTNOTES (A) ACTION STEPS: The Exploratory Initiative on the New Human Genetic Technologies is helping alert and inform the leadership of civil society organizations about the new human genetic technologies, and about steps we need to take to prevent their misuse. If you or your organization would like to schedule a meeting, presentation or workshop; subscribe to the Exploratory Initiative's free email newsletter; receive its list of publications; or for other inquiries about becoming involved, please E-mail Marcy Darnovsky at . Exploratory Initiative on the New Human Genetic Technologies 466 Green Street San Francisco, CA 94133, USA E-mail: Phone: +1-415-434-1403 Fax: +1-415-986-6779 (B) RESOURCES: Books Opposing the new techno-eugenics: o Andrews, Lori. _The Clone Age: Adventures in the New World of Reproductive Technology_. New York: Henry Holt, 1999. o Appleyard, Bryan. _Brave New Worlds: Staying Human in the Genetic Future_. New York: Viking, 1998. o Hubbard, Ruth and Elijah Wald. _Exploding the Gene Myth_. Boston: Beacon Press, 1997. o Kimbrell, Andrew. _The Human Body Shop: The Engineering and Marketing of Life_. New York: HarperCollins, 1993. Books Supporting the new techno-eugenics: o Pence, Gregory E. _Who's Afraid of Human Cloning?_ Lanham, MD: Rowman & Littlefield, 1998. o Silver, Lee. _Remaking Eden: How Cloning and Beyond Will Change the Human Family_. New York: Avon, 1997. Web Sites Opposing the new techno-eugenics: o Council for Responsible Genetics, http://www.gene- watch.org o Campaign Against Human Genetic Engineering, http://www.users.globalnet.co.uk/~cahge O Genetic Engineering and its Dangers: http://online.sfsu.edu/~rone/gedanger.htm Web Sites Supporting the new techno-eugenics: o UCLA Program on Medicine, Technology and Society (Gregory Stock, director), http://research.mednet.ucla.edu/pmts/germline o Extropy Institute: http://www.extropy.org SOURCES OF QUOTES: [1] "Theological Letter Concerning the Moral Arguments," June 8, 1983, presented to the U.S. Congress. Foundation on Economic Trends, Washington, DC. [2] Silver: L. Silver. 1997. _Remaking Eden: How Cloning and Beyond Will Change the Human Family_ (New York: Avon Books), pp. 4-7, 11. [3] Watson: Gregory Stock and John Campbell, eds., 2000. _Engineering the Human Germline_ (New York: Oxford University Press), pp. 79, 85. [4] Pence: G. Pence, 1998. _Who's Afraid of Human Cloning?_ (New York: Roman & Littlefield), p. 168. [5] ABCNEWS.com: http://abcnews.go.com/ABC2000/abc2000living/babies2000. [6] Thurow: L. Thurow, 1999. _Creating Wealth: The New Rules for Individuals, Companies and Nations in a Knowledge- Based Economy_ (New York: Harper Collins), p. 33. [7] Fukuyama: F. Fukuyama, "Second Thoughts: The Last Man in a Bottle," _The National Interest_, Summer 1999, pp. 28, 33. ********************************************************** (III) ABOUT THE LOKA INSTITUTE The Loka Institute is a nonprofit organization dedicated to making research, science and technology responsive to democratically decided social and environmental concerns. Current Loka projects include: o The Community Research Network o Deliberative Citizens' Panels on Science & Technology o Identifying Democratic Technologies o Building a Constituency for Democratizing Research, Science & Technology TO FIND OUT MORE ABOUT THE LOKA INSTITUTE, to participate in our on-line discussion groups, to download or order publications, or to help please visit our Web page: . Or contact us via E-mail at . ************************************************************ (IV) LOKA INSTITUTE INTERNSHIPS The Loka Institute has openings for volunteers, graduate and undergraduate student interns, and work-study students. Interns' responsibilities include updating our Web page; managing email lists and listservs; conducting background research on issues concerning science, technology, and society; and helping with administrative work. Interns committing to a semester or more will have the opportunity to integrate independent research into their internship experience. 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