GENTIC ENGINEERING Abstract This 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. Introduction Nine 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.
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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 Difference Many 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 Embryos In 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 Defense A.
Rule Utilitarianism In 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 Autonomy But 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 that 7. 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 Necessity Genetic 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 possib …