GENTIC ENGINEERING Essay, Research Paper AbstractThis paper sets out to defend human genetic engineering with a new bioethical approach, post-humanism, combined with a radical democratic political framework. Arguments for the restriction of human genetic engineering, and specifically germ-line enhancement, are reviewed.
GENTIC ENGINEERING Essay, Research Paper
AbstractThis paper sets out to defend human genetic engineering with a new bioethical approach, post-humanism, combined with a radical democratic political framework. Arguments for the restriction of human genetic engineering, and specifically germ-line enhancement, are reviewed. Arguments are divided into those which are fundamental matters of faith, or “bio-Luddite” arguments, and those which can be addressed through public policy, or “gene-angst” arguments.The four bio-Luddite concerns addressed are: Medicine Makes People Sick; There are Sacred Limits of the Natural Order; Technologies Always Serve Ruling Interests; The Genome is Too Complicated to Engineer. I argue that these are matters of faith that one either accepts or rejects, and that I reject.The non-fundamentalist or pragmatic concerns I discuss are: Fascist Applications; The Value of Genetic Diversity; The Geneticization of Life; Genetic Discrimination and Confidentiality; Systematically Bad Decisions by Parents; Discrimination Against the Disabled; Unequal Access; The Decline of Social Solidarity. I conclude that all these concerns can be adequately addressed through a proactive regulative framework administered by a liberal democratic state. Therefore, even germ-line genetic enhancement should eventually made available since the potential benefits greatly outweigh the potential risks.
1. IntroductionNine years ago Jeremy Rifkin convinced me that genetic technology would determine the shape of the future while I rode a bus through the small, crooked, immaculate and beautiful streets of Kyoto. I was reading his Algeny [Rifkin, 1983], an alarmist attack on the coming of the gene age, alongside What Sort of People Should There Be? [Glover, 1984], a moderate defense of genetic engineering by the Oxford don Jonathan Glover. In a sense, in the nine years since, I have recoiled from the radical Rifkin to embrace the reformist Glover.In earlier decades Rifkin had been an SDS activist and a founding member of the socialist New American Movement. Sometime in the early 80s, Rifkin saw the distant headlight of gene-technology and began to sound the alarm. Since then Rifkin and his Foundation on Economic Trends have led the fight against the release of genetically engineered organisms and the funding of genetics research, as well as other “trends” that Rifkin is worried about, such as the meat industry [Rifkin, 1992], the legal establishment of surrogate motherhood, and the speeding up of experienced time in the computer age [Rifkin, 1987].While extreme, Rifkin is a bellwether of Luddite tendencies in bioethics and the political Left, two of the movements within which I construct my worldview. Among bioethicists the anti-technological agenda has focused on abuses and social dangers in medical research and practice, and our alleged need to accept death and technological limits. The post-60s, environmentalist Left focuses on the ways that technology serves patriarchy, racism, imperialism, corporate profits, structural unemployment, the authoritarian state, and domination by scientific discourse. The response of bioethicists [Lapp?, 1972, 1987; Kass, 1972, 1973, 1979; Ramsey, 1970. 1972, 1978; Duster, 1990; Council for Responsible Genetics on Human Germ-Line Manipulation, 1992] and the Left [Keller, 1991; Heins, 1991; Morales, 1991; Klein, 1991; Miringoff, 1991; and Hubbard and Wald, 1993a, 1993b] to genetic engineering has been particularly fevered, driven by accusations of eugenics and the defilement of sacred boundaries.Since that bus ride in Kyoto my initial horrified agreement with Rifkin has shifted to determined agreement with Glover, that we can control genetic technology and make it a boon rather than a bane. Instead of a Brave New World, I see genetic engineering offering a grand, albeit somewhat unpredictable, future. While many of the concerns of ethicists and the Left about this technology are well-founded, I now believe they are answerable. While I still acknowledge the need for democratic control and social limits, I am now convinced that banning genetic engineering would be a profound mistake.Those who set aside angst about changing human nature, and embrace the possibility of rapid diversification of types of life, are establishing a new moral and political philosophy for the 21st century, a system some refer to as “post-humanism.” The term “post-humanism” was coined by cyberpunk theorist Bruce Sterling in his 1985 novel Schismatrix, and popularized by a loose network of anarchocapitalist technology enthusiasts who refer to themselves as “extropians” [More, 1990, 1992, 1994]. On the Left, the principal touchpoint for post-humanism has been Donna Haraway, starting with her delphic 1985 “Manifesto for Cyborgs.”Like all philosophical systems, post-humanism incorporates prior philosophic and political systems but recasts them around new definitions of personhood, citizenship, and the limits of social solidarity and human knowledge. Like Glover, post-humanists view the coming of genetic technology the way most Americans now view organ transplants or chemotherapy; there are many practical questions about how the technologies get developed and tested, who needs them, and how we pay for them, but there is no question that they should be available.Unfortunately most post-humanists are unalloyed libertarians and anarchists, and offer no answers to concerns about the way that social inequality will shape, and beshaped by, genetic technology. In this essay I will be trying to imagine what our current liberal democratic societies could be like if we allowed a post-humanist flowering of genetic technology, and how many of the alleged problems of genetic engineering can be addressed through radicalizing both democracy and liberty, rather than by erasing the State or imposing Luddite bans.2. Distinctions without a DifferenceMany writers on these technologies draw distinctions between “negative” and “positive” genetic modification, and the modification of the somatic versus germ-line cells [Glover, 1984; Krimsky, 1990; Moseley, 1991; Elias and Annas, 1992; UNESCO International Bioethics Committee, 1995]. Negative genetic modification has been defined as the correction of a genetic disease, while positive modification has been defined as the attempt to enhance human ability beyond its normal limits. The somatic-germ-line distinction has been made to address the alleged ethical difference in modifying only one’s own body, versus modifying one’s progeny as well.Both distinctions have been made by those who wanted to draw a line to demarcate the ethical boundaries of genetic research. The distinctions are quite fuzzy, however [Krimsky, 1990; Bonnicksen, 1994A]. Take for instance Culver and Gert’s effort to define “malady” to distinguish when a genetic therapy is or isn’t “enhancement”:A person has a malady if and only if he has a condition, other than his rational beliefs and desires, such that he is suffering, or at increased risk of suffering, an evil (death, pain, disability, loss of freedom or opportunity or loss of pleasure) in the absence of distinct sustaining cause. [Culver and Gert, 1982: 125]Doesn’t any cause of illness, suffering and death, or inadequacy in the face of one’s goals, fit this criteria? Take for instance a potential future genetic therapy that turned off a hypothetical aging switch, doubling the human life span; is this therapy for the diseases which result from the activation of the aging switch, such as Alzheimer’s or cancer, or an unconscionable intervention into the natural span of life?As to the modification of one’s own genes versus future progeny, the argument is made that current generations would be violating the self-determination of future generations by doing so. The first response is that our choice of breeding partners already “determines” the biology of future generations. Take the case of a couple who both carry a gene for latent inheritable mental illness. The only difference between their choosing not to breed with one another, and choosing to have germ-line therapy on themselves or their child to correct the illness, is that the latter choice is a far happier one.Technology itself makes the distinction unhelpful, since some viral vectors will introduce DNA into both somatic and germ-line cells, and some disorders will require intervention at the blastula stage or before conception in order to be effectively treated. Genetic technology will make it possible for future generations to change their genes back if they don’t like them. Only modifications which remove decision-making autonomy from future generations altogether would truly raise issues of “self-determination,” and I will discuss such fascist scenarios below.These distinctions are extremely fuzzy, and do not represent important ethical boundaries. In this essay I want to defend genetic therapy and enhancement, as well as self-modification by competent adults and our modification of our progeny. Most international consensus statements have drawn the line at germ-line therapy, or genetic enhancement, or at least germ-line enhancement [Bonnicksen, 1994A] although language about these matters are conspicuously absent in two recent statements [UNESCO International Bioethics Committee, 1995; HUGO, 1995].Therefore, the center of the terrain that I want to defend is germ-line enhancement, the modification of the genetic code such that the parent passes on the enhancements to their progeny. The defense of this practice necessarily addresses the concerns about many other technologies, such as:In-Vitro Fertilization Surrogate Mothering Extra-uterine Gestation Genetic Screening and Diagnosis Genetic Selection, including Sex Selection Cloning of EmbryosIn a more fundamental sense I am writing in defense of our control of our bodies, individually and collectively. I want to build a broad enough defense to cover any technology offering modification of human abilities, whether a specific genetic application has been imagined for that purpose or not.3. Ethical Starting Points for A DefenseA. Rule UtilitarianismIn general I assume the ethical stance of Millsian rule utilitarianism: acts are ethical which lead to the greatest good or happiness for the greatest number. Rule utilitarianism means that, when confronted with a distasteful case, such as throwing a Christian to a lion for the amusement of thousands of Romans, I fall back on general rules of thumb: “In general, societies that respect individual rights and liberties will lead to greater happiness for all.”In the case of genetic engineering my broad assertion is that gene-technologies can, and probably will, give people longer, healthier lives, with more choices and greater happiness. In fact, these technologies offer the possibility that we will be able to experience utilities greater and more intense than those on our current mental pallet. Genetic technology will bring advances in pharmaceuticals and the therapeutic treatment of disease, ameliorating many illnesses and forms of suffering. Somewhat further in the future, our sense organs themselves may be re-engineered to allow us to perceive greater ranges of light and sound, our bodies re-engineered to permit us to engage in more strenuous activities, and our minds re-engineered to permit us to think more profound and intense thoughts. If utility is an ethical goal, direct control of our body and mind, through genetic control, cybernetics, prosthetics, or whatever, suggests the possibility of unlimited utility, and thus an immeasurable good.B. Privacy, Self-Determination and Bodily AutonomyBut there are other rules to consider, rules which are the basis of other ethical systems. Most utilitarians, and many others, accept the general rule that liberal societies, which allow maximum self-determination, will maximize social utility. The rule of, or right to, self-determination also argues that society should have very good reasons before interfering with competent adults applying genetic technology to themselves and their property. Self-determining people should be allowed the privacy to do what they want to with their bodies, and the conceptive products of their bodies, except when they are not competent, or their actions will cause great harm to others. I will argue that most concerns about human genetic engineering do not amount to a clear and present danger to the public safety adequate to legitimate violating bodily autonomy and personal liberty. My objection to state intervention in personal liberty holds especially true for moral appeals to defend “human nature,” “public morality,” and so on, such as the language of many consensus statements which argue against genetic technology alleging defense of “human dignity.”Acknowledging self-determination as an ethical starting point addresses half of the revulsion to genetic engineering: the concern that people will be forced to conform to eugenic policies. I will discuss this fear of racist and authoritarian regimes at greater length, but suffice it to say here that individuals should not be forced to have or abort children, or forced to modify their own or their children’s genetic code. I heartily endorse the formulation of the Preliminary Draft of a Universal Declaration on the Human Genome and Human Rights [UNESCO International Bioethics Committee, 1995] which states that7. No intervention affecting an individual’s genome may be undertaken, whether for scientific, therapeutic or diagnostic purposes, … without prior, free and informed consent of the person concerned or, where appropriate, of his or her duly authorized representatives, guided by the person’s best interests.In this essay, I am articulating the genetics policies that liberal and democratic societies should adopt; I am opposed to racism and authoritarianism, and any racist or authoritarian application of genetic technology.I also view the embryo and fetus as the biological property of the parents, and exclusively of the mother when in utero. Again, the rights of the future child and of society may restrict what we allow parents to do to their prenatal property. But I would again argue that the risks to society and to the children themselves of prenatal genetic manipulation are negligible for the near future, and regulable as they become apparent.C. Freedom from Biological NecessityGenetic technology promises freedom and self-determination at an even more basic level: freedom from biological necessity. Social domination pales before our domination by the inevitability of birth, illness, aging and death, burdens that genetic technology offers to ameliorate. As for Marx, the goal of this revolution is to move from the realm of necessity to the realm of freedom. Just like industrial automation, genetic technology is a technology with liberatory possibilities; the difficulties lie not in the means of production, but in the relations of production, the social and political context in which the technology is deployed.A second, and far less Marxian observation, is that social domination has some biological determinants. Patriarchy is, in part, based on women’s physical vulnerability, and their special role in reproduction. While industrialization, contraception and the liberal democratic state may have removed the bulk of patriarchy’s weight, genetic technology offers to remove the rest. Similarly, while racism, ageism, heterosexism, and so on may be only 10% biological and 90% social construction, at least the biological factors can be made a matter of choice by genetic and biological technology.D. Justice and a Better SocietyWhile the biological factors in most forms of inequality are probably slight, genetic technology does promise to create a more equal society in a very basic way: by eliminating congenital sources of illness and disability that create the most intractable forms of inequality in society. We can go to great lengths to give the ill and disabled full access to society, but their disabilities place basic limits on how equal their social participation and power can be. Our ability to ameliorate these sources of congenital inequality may even impose obligations on us to do so, at least for those who are cognitively impaired and incompetent. Admittedly, we will probably have surmounted most disabilities through non-genetic technological fixes long before we do so through genetic therapy. But the general principle is that genetic technology promises to make it possible to give all citizens the physical and cognitive abilities for equal participation, and perhaps even to bring about a general enhancement of the abilities essential to empowered citizenship.E. A Critical DefenseUnlike those libertarians who hold self-determination as a cardinal principle, I adopt more of a social democratic stance, and foresee legitimate limits that we can and should place on these technologies. For instance, some characteristics of society, such as social solidarity and general equality, are so important that they warrant the regulation of these technologies in the furtherance of these goals. Collective interests should also be pursued through active means, such as government subsidies for the research, development and application of genetic technologies.Nor am I an unquestioning advocate of technological progress. Some technologies are so inscribed with harmful ends that no amount of regulation and social direction can make them worth the risk [Winner, 1986]. If I were convinced that genetic technology, like nuclear weapons technology, had no redeeming qualities and only great risks, then I would embrace a complete ban.But the potential benefits of genetic technology far outweigh the potential risks. In short, I advocate a position of critical support, a position which reflects the suspicious optimism that most people around the world have toward genetic technology.A 1987 survey of Americans by the U.S. Office of Technology Assessment found that support for genetic engineering ranged from 84% approval for genetic modifications to “Stop children from inheriting a usually fatal genetic disease,” to 44% support for “positive” genetic modification to “Improve the intelligence level and physical characteristics that children would inherit.” [OTA, 1987] In a 1993 survey, more than 50% of the respondents in India and Thailand supported the use of gene therapy for the purposes of physical, intellectual or moral enhancement [Macer, 1994]. A 1994 Gallup poll in the UK reports 20% of people accepting enhancement gene therapy [Nature, 1994, 371: 193].4. Arguments Against Genetic TechnologyThere are at least two kinds of criticisms of genetic technology, fundamentalist and non-fundamentalist. (See Mauron and Thevox (1991) for a similar distinction.) The fundamentalist or “bio-Luddite” concerns, such as those of Jeremy Rifkin, I reject fundamentally. On the other hand, I accept the validity of many of the non-fundamental concerns, but see the problems they suggest as soluble. Few of these concerns about genetic technology raise new questions for medical ethics [Proctor, 1993]. The same questions have been raised by previous medical research and therapy, and those challenges have been met without bans on those technologies.Some non-fundamentalist critics believe that, cumulatively, the risks posed by new genetic technologies are great enough to warrant postponing genetic research for some indefinite period of study and preparation. With these concerns I will argue that, with adequate technology assessment and anticipatory regulation, there will be adequate time to regulate genetic technology as we proceed; none of the risks are sufficiently weighty, individually or cumulatively, to outweigh the potential benefits.The fundamentalist or bio-Luddite concerns I will address are:A. Bio-Luddism 1 : Medicine Makes People SickB. Bio-Luddism 2 : Sacred Limits of the Natural OrderC. Bio-Luddism 3 : Technologies Serve Ruling InterestsD. Bio-Luddism 4 : The Genome is Too Complicated to EngineerThe non-fundamentalist or pragmatic concerns I will discuss are:E. Gene Angst 1 : Fascist ApplicationsF. Gene Angst 2 : The Value of Genetic DiversityG. Gene Angst 3 : The Geneticization of LifeH. Gene Angst 4 : Genetic Discrimination and ConfidentialityI. Gene Angst 5 : Systematically Bad Decisions by Parents for ChildrenJ. Gene Angst 6 : Discrimination Against the DisabledK. Gene Angst 7 : Unequal Access, Priority Setting and the MarketL. Gene Angst 8 : The Decline of Social SolidarityA. Bio-Luddism 1 : Medicine Makes People SickOne extreme bio-Luddite position was elaborated by Ivan Illich [Illich, 1975]: medicine itself makes us sick and should be done away with. A variant on this argument is that genetic screening will eventually determine that all of us are “at risk,” making everyone see themselves as sick. More troubling, genetic diagnosis might create a two-tier social system, divided between those with relatively clean genes and those with genetic disease. In other words, genetic diagnosis will make us all genetically diseased. This would be even more problematic if the genetic diagnosis was for a disease which was not yet curable.Some medicine makes some people sicker, but I hold fast to the modernist promise that scientific progress generally improves our lives and that knowledge is better than ignorance. It is unlikely that we will ever force people to know their likelihood of developing disease, though perhaps we should educate parents and physicians to be cautious about informing children of their risks. In any case, we all know that we are at risk of dying, and with or without genetic diagnosis people view the medical history of their parents and relatives as harbingers of things to come. Both knowing and refusing to know one’s genetic makeup are empowering choices for competent adults; denying people the option of making this choice does not improve their lives.This argument also presumes just the first, screening phase of the new eugenics, and not the latter correction phase. Far from making everyone sick, the advance of genetic therapy promises to make everyone well.B. Bio-Luddism 2 : Sacred Limits of the Natural OrderRifkin has joined forces with religious leaders to assert another fundamentalist tenet, that genetic engineering transgresses sacred limits beyond which we should not “play God” [Porter, 1990]. I don’t believe that divine limits are discernible, and I don’t believe in any “natural order” except the one we’ve got. As Love and Rockets point out: “you can’t go against nature, ’cause when you go against nature, its part of nature too.” There are no “natural limits” in our taking control of our biology or ecology. There is no “natural” way to have a baby or die. Even if there was a natural way to birth, age or die, I don’t believe we are morally compelled to adopt it.It may be that this idea of a divinely ordained biological order is distinctly Judeo-Christian-Islamic, and not shared by religions and cultures which believe in different cosmogonies. In a 1993 survey of attitudes towards genetic therapy in the Asia-Pacific region (Australia, Hong Kong, India, Israel, Japan, New Zealand, The Philippines, Russia, Singapore and Thailand) Daryl Macer reports that there was overwhelming support for genetic therapy to cure disease, and that almost no respondents were concerned that the therapy violated the natural order or God’s plan [Macer, 1994].C. Bio-Luddism 3 : Technologies Serve Ruling InterestsSome hesitate to argue that medical technology is bad in and of itself, but argue instead that the powerful always shape and apply technologies to further their domination of the less powerful [Hubbard and Wald, 1993]. While this is probably true, the conclusion is that all technology should be abandoned. The wealthy and powerful have more access to telephones than the poor and powerless, and telephones are used by the wealthy and powerful to collect more wealth and power. But I see the answer to be subsidized phone service and egalitarian social reform, not banning the telephone [Winner, 1986].D. Bio-Luddism 4 : The Genome is Too Complicated to EngineerA fourth fundamentalist conviction is that the genome is too complicated to engineer, and therefore there are certain to be unpleasant, unintended consequences [Glover, 1984: 33]. This argument is directly parallel to the deep ecologists’ conclusion that human management of the complex global eco-system is impossible, and that our only hope is to leave the planet alone to its own self-organization. Arne Naess [Naess, 1973] and Devall and Sessions [Sessions, 1980] are the modern touchstones for the deep ecological philosophy which overlaps with this biofundamentalist stupefaction in the face of evolved complexity, while movements like Earth First! take the argument to its reductio ad absurdum (AIDS is good, etc.). Outside of the anti-environmental Right, voices in defense of the possibility of eco-management have been rare [Anderson, 1987].The genome and eco-system are both very complicated, and the ability to do more than correct local defects in either may be many decades away. But eventually we will have the capacity to write genetic code and re-engineer eco-systems, and to computer-model the structural consequences of our interventions on future bodies and planets. Of course, it will be difficult to decide when the consequences of a genetic blueprint are sufficiently well-understood that it is safe for use, and our current regulatory scheme is probably not yet adequate to the task [Zallen, 1989; Ledley, et al., 1992; Ledley, 1991; Areen and King, 1990; Council for Responsible Genetics, 1993].Our understanding of the genome and ability to predict consequences must be very robust before we allow human applications or the release of animal applications. While Elias and Annas [Elias and Naess, 1992] object to “positive” germ-line therapy, which I would defend, they propose two sensible preconditions on the application of gene-engineering:(a) that there should be considerable prior experience with human somatic cell gene therapy, which has clearly established its safety and efficacy; and(b) that there should be reasonable scientific evidence using appropriate animal models that germ-line gene therapy will cure or prevent the disease in question and not cause any harm, and(c) all applications should be approved by the NIH’s Working Group on Gene Therapy and local Institutional Review Boards, with prior public discussion.Again. I also endorse the formulation of the Preliminary Draft of a Universal Declaration on the Human Genome and Human Rights [UNESCO International Bioethics Committee, 1995] which states that7. No intervention affecting an individual’s genome may be undertaken, whether for scientific, therapeutic or diagnostic purposes, without rigorous and prior assessment of risks and benefits pertaining thereto…Those of us who believe in the possibility of effective public regulation may differ widely as to the appropriate standards the public and these regulatory bodies may use. But liberals and conservatives differ fundamentally from those bio-Luddites who believe that the natural world is so complicated, and governments so unwise, that all intervention must be forbidden.Undoubtedly, genetic design will undergo extensive experimentation in the design of animals before any human experimentation begins, and I see few ethical problems with using animals for experiments in genetic design. The problem with animal research is that it might produce species that are dangerous if released into the eco-system. Release of gene-engineered creatures should be done very cautiously, and it may be that we should have a moratoria on the release of geneticaly engineered plants and animals until we have adequate oversight [Council for Responsible Genetics, 1993]. Genengineered micro-organisms are a much greater risk than genengineered humans, since humans don’t breed rapidly, are completely vulnerable for years of childhood, are large and visible, and can be controlled with firearms.The next step will be to decide when genetic products can be applied by adults to themselves, for therapeutic or other reasons. It is possible to imagine social risks from self-applied genetic modification, and we would probably require genetic products to go through the same Food and Drug Administration testing that pharmaceuticals go through. On the other hand, I am in favor of substantial liberalization of our drug and pharmaceutical regulations, including the legalization of narcotics and psychotropic drugs, and I am also for a fairly liberal policy towards genetic self-modification.The real dilemma with testing comes with the genetic design of children [Fletcher, 1985]. Even if we had an extreme market society which permitted unregulated genetic modification of eggs, sperm and embryos, I suspect that few women would risk bearing and raising children whose “product safety” had not been guaranteed. Nonetheless we will inevitably continue to strictly regulate the genetic modification of children. The safety and efficacy of genetic products will not only be demanded by parents, but also by federal agencies and providers.While daunting, these are many of the same issues raised by drugs and medical devices today. With or without genetic design products we are moving to a new phase of technological assessment of medical products balancing the demands for demonstrated efficacy and safety with demands for rapid release of useful therapies, and the individual freedom to control one’s body. Genetic products will be only one of the ultimately soluble challenges our regulator
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