Embracing Change with All Four Arms: A Post-Humanist Defense of Genetic Engineering
James J. Hughes
Originally published in Eubios Journal of Asian and International Bioethics June 1996, 6(4):94–101
I wrote this in 1994 while I was working at the MacLean Center for Clinical Medical Ethics at the University of Chicago, and finishing my doctorate. I had been talking with the Extropians on their email list, and beginning to see some convergence between my critiques of Luddism in ecological politics, and the parallel arguments in bioethics. This essay was the beginning of the next 25 years of trying to articulate a technoprogressive position.
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.
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 and the Left to genetic engineering has been particularly fevered, driven by accusations of eugenics and the defilement of sacred boundaries[1].
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[2]. 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.”[3] 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. In this essay I will be trying to imagine what the world might be like if post-humanism becomes influential enough to allow a flowering of genetic technology.
Defining the Terrain
Ground-zero of the terrain that I want to defend is “germ-line therapy,” the permanent modification of the genetic code such that the parent passes on the modifications to their progeny. Each application of genetic therapy raises its own dilemmas, however, depending on who is doing what kind of modification to whom. I will try to touch on some of the broadest issues across these applications, but not all.
I also wish to defend many of non-genetic applications associated with genetics, which raise questions about genetics. Some of the applications I have in mind include:
In-Vitro Fertilization
Surrogate Mothering
Extra-uterine Gestation
Preconceptive/Prenatal/Adult Genetic Screening and Diagnosis
Preconceptive/Prenatal Genetic Selection, including Sex Selection
Cloning of Embryos
Since genetic engineering will be a cornerstone of medical science in the coming century, in a more fundamental sense I am writing in defense of therapeutic possibility itself, and of the control of the human body. 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.
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). 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, 1994). 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 case. (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 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, 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 and or their child to correct the illness, is that the latter choice is a far happier one.
The second response to the somatic-germ-line distinction is that advancing genetic technology will make it possible for future generations to change their genes 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 modification of one’s progeny.
Ethical Starting Points for A Defense
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[4]. If utility is an ethical goal, direct control of our body and mind suggests the possibility of unlimited utility, and thus an immeasurable good.
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, except when they are not competent or their actions will cause great harm to others.
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 to modify their own or their children’s genetic code. I am addressing the desirable genetics policies of liberal societies, not of authoritarian regimes.
Within liberal societies, competent adults should generally be allowed to do as they like with their bodies, including genetically modify them. The potential risks to others from such modifications, which I will try to discuss below, are all soluble, and not sufficient to warrant contravening the right of bodily autonomy.
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.
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 (1848), the goal of this revolution is to move from the realm of necessity to the realm of freedom.
Social domination also builds on a biological foundation. 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.
Justice and a Better Society
While 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.[5] 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.
A Critical Defense
Unlike 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 than I would embrace a complete ban.
But the potential benefits of genetic technology far outweighs the potential risks. In short, I advocate a position of critical support, a position which probably reflects the suspicious optimism that most Americans have toward genetic technology[6].
Arguments Against Genetic Technology
There are at least two kinds of criticisms of genetic technology, fundamentalist and non-fundamentalist[7]. 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. As Proctor (1993) notes, few of these concerns about genetic technology raise new questions for medical ethics. 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:
Bio-Luddism 1 : Medicine Makes People Sick
Bio-Luddism 2 : Sacred Limits of the Natural Order
Bio-Luddism 3 : Technologies Serve Ruling Interests
Bio-Luddism 4 : The Genome is Too Complicated to Engineer
The non-fundamentalist or pragmatic concerns I will discuss are:
Gene Angst 1 : Fascist Applications
Gene Angst 2 : The Value of Genetic Diversity
Gene Angst 3 : The Geneticization of Life
Gene Angst 4 : Genetic Discrimination and Confidentiality
Gene Angst 5 : Systematically Bad Decisions by Parents for Children
Gene Angst 6 : Discrimination Against the Disabled
Gene Angst 7 : Unequal Access, Priority Setting and the Market
Gene Angst 8 : The Decline of Social Solidarity
Bio-Luddism 1 : Medicine Makes People Sick
One extreme bio-Luddite position was elaborated by Ivan 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, those with relatively clean genes and those with genetic disease. In other words, genetic diagnosis will either make us all sick, or at least a majority of us. 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.
Bio-Luddism 2 : Sacred Limits of the Natural Order
Rifkin 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” accept 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 or die I don’t believe we are morally compelled to adopt it.
Bio-Luddism 3 : Technologies Serve Ruling Interests
Some 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 (See for instance 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 social reform, not banning the telephone.
Bio-Luddism 4 : The Genome is Too Complicated to Engineer
A fourth fundamentalist conviction is that the genome because it is too complicated to engineer, and unpleasant, unintended consequences of such efforts are certain (Glover, 1984: 33). This argument is directly parallel to the deep ecological 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 self-organization[8].
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.
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.[9]
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. But as I am in favor of substantial liberalization of our drug and pharmaceutical regulations, including the legalization of narcotics and psychotropic drugs, 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[10]. But we will inevitably continue to be a global society that enforces strong regulation of the genetic modification of children. The safety and efficacy of genetic products will not only be demanded by parents, 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 regulatory scheme will face.
Gene Angst 1 : Fascist Applications
Another concern expressed by many critics of genetic technology is the dire consequences of the re-emergence of fascist, racist and authoritarian regimes, and their potential applications of these tools to produce compliant, and genetically uniform subjects. The first point to make about fascist uses of eugenic ideology or technology is that nothing a democratic society does to forbid itself genetic technology will have any impact on future or contemporary fascist regimes. Indeed, if there is any “national security” to be gained from genetic technology than it would behoove liberal democracies to gain them as well. For instance, public health campaigns to detect and correct the genetic predisposition to alcoholism, or to enhance the intelligence of children, could make nation much more powerful and productive than their more conservative neighbors; would it not be in the interest of democracy for democracies to pursue these measures?
Yet, what if the fascist regimes found strength in breeding different castes a la Brave New World, and democracies could only meet the challenge by becoming equally repugnant? This is a possibility, and it raises the important point: the way to stop fascist uses of genetics is to prevent the rise of fascism, not to restrict the emergence of genetic technology. As we see today with Iraq and North Korea, firm agreements by right-thinking nations that only the United States is sufficiently moral to be allowed the ownership of certain weapons has little impact on recalcitrant regimes. If we cannot effectively prevent the proliferation of nuclear technology, with its large radioactive facilities visible to satellites, we will have even less success with genetic laboratories. I support the strengthening of the legal, judicial and military might of U.N. so that it might begin to enforce global law, but I think the proper task for such a New World Order is the suppression of fascist regimes likely to use genetics for nefarious ends, not the policing and suppression of outlawed genetic technologies. (See Bonnicksen, 1994 for a very complete review of the global efforts to harmonize national policies towards genetics, and Macer, 1991 for a discussion of the international ownership of genetic information.)
Genetic science does not itself encourage racism or authoritarianism. In fact, the advance of scientific knowledge may even erode the pseudo-scientific basis on which most eugenics has rested. Presumably the advance the advance of genetic science will tell us whether there is a genetic basis for gender and racial differences in abilities, or not, and how important these are. If there are genetic factors in gender or racial difference, they will most likely be revealed as minor beside the social factors, and the genetic factors will become ameliorable through a technical fix. Some insist that knowledge itself, or knowledge about forbidden topics, will lead to fascism; I prefer the modernist optimism that knowledge is at least neutral, and sometimes a scourge of obscurantism.
Gene Angst 2 : The Value of Genetic Diversity
Another concern that is often expressed vis-a-vis genetic engineering is the alleged aesthetic or biological virtues of genetic diversity. Many refer to the evidence from ecology that the ecosystems are more stable when they contain a greater diversity of gene-lines. Some suggest, for instance, that our very survival as a species might hinge on genetic diversity if we faced some blight that only a few were resistant to.
The first objection is that diversity is not a sufficiently compelling ethical or aesthetic virtue that it can trump the prevention of disease, or the improvement of the quality of our lives. We “reduced diversity” when we eradicated smallpox and polio, with no regrets. We “reduce diversity” when we insist on compulsory education because we don’t value the diversity of extreme class inequality.
The second objection to the diversity argument is that any loss of biological diversity will be compensated for by an increase in biological knowledge and control. It is unlikely that a future society would have the ability to create “superior genes” and yet be unable to meet the challenge of infectious disease.
Third, the regime of genetics I have outlined is a liberal one, which should produce as much diversity as it reduces. While I support public provision of genetic screening for disease, I oppose any eugenic coercion. People desire different attributes and abilities, for themselves and their children; for every Aryan parent that chooses a blond, blue-eyed Barbie phenotype, I would hope there would be a Chinese parent choosing a classic Chinese ideal of beauty. True, this might lead to the convergence toward a few physical and mental ideals, though I suspect that phenotypic fashions will change quickly. But I see no ethical difference between permitting people to change their genes in conformity with social fashions, and permitting them to change their clothes, makeup and beliefs to do so.
Yet, perhaps there is some aesthetic and or even civic virtue in diversity. If it is valued by the public, let us establish incentives for diversity. If the number of parents choosing to raise blond boys is offensive to public opinion, let us establish tax incentives for parents who bear dark-haired girls. In any case, we will quickly know if there are broad trends that we find offensive, and I trust our ability to craft non-coercive policy responses to re-establish any valued diversity we feel may be eroding.
Gene Angst 3 : The Geneticization of Life
A more diffuse “cultural” concern about genetic technology is that people will begin to see genetics as more central and influential in life than they should. For instance, Richard Shweder (1994) believes that eugenics and genetic determinism are being fueled by contemporary genetic technology and research, at the expense of attempts to ameliorate social ills. Other critics, such as Barbara Katz Rothman (1989) see genetic technology as contributing to the reification of the genetic ties between people at the expense of valuing their social relationships.
Both of these concerns have some legitimacy. Undoubtedly the public will invest genetics with more importance in the production of disease, intelligence and other characteristics than will be warranted by a more balanced scientific perspective. And as the current market for in vitro fertilization shows, people will pay astronomic sums for the chance at a genetic tie to their children, when they would have had to adapt to joys of adoption in an earlier age.
Again this misapprehension by the public be made more or less likely by the advance of genetic technology? When we begin screening for the genes which make lung cancer more likely, it won’t take long for the “negatives” to understand that they are still at risk from smoking or asbestos. As genetic diagnosis and treatment become more prevalent people will become as sophisticated about their genetic diagnoses as they are about the risks of cigarette smoking or cholesterol: which is to say that risk-averse folks will take their genetic propensities very seriously, and risk-prone folks won’t.
As to Rothman’s concern over the primacy of social ties, fertility treatments, surrogacy and genetic technology do not reify the genetic bond, but cause its slow deconstruction (Macklin, 1991; Stanworth, 1988). Just as heart-lung machines forced us to confront the separability of heart and brain death, genetic intervention will force us to clarify the relationship of social ties and genetic ties. If you’ve picked most of your child’s genes from a catalog, its likely to reinforce the importance of your social parenting ties to your children.
In general our ability to control genetics will help to clarify the appropriate weight to give to genetics in culture and social affairs. And as the nature-nurture relationship becomes clarified, people will not be any less likely to fix the nurture side of their problems. What if some future polity determined that it would be easier to genetically engineer resistance to smog than to clean up industrial air pollution? It would be a tragedy, but not really that different from our struggles over toxics today, which we compensate for through health care expenditures. Genetic technology won’t make it any less likely that we will have an ecologically sane society, only that our fall-back options will be more effective.
Gene Angst 4 : Genetic Discrimination and Confidentiality
At the turn of the century women school teachers were not allowed to drink, smoke, date or dance. The movement for workers’ rights have established boundaries around what it is permissible for employers to insist on in their employees. Yet the struggle continues. It is already clear that, given the opportunity, employers would insist on knowing the genetic risks of their employees, and deny workers employment or health insurance on the basis of this risk profile. To his credit Jeremy Rifkin has already had a bill guaranteeing the confidentiality of genetic information introduced in Congress, and while it has not yet passed, some form of confidentiality in certain to be guaranteed by the turn of the millennium. In addition, the Americans with Disabilities Act and similar legislation will clearly be mustered to defend workers from genetic discrimination.
Keeping genetic information confidential from health insurers is a much more tricky matter, since they would be reimbursing for any special screening or treatment that genetic risks called for. Unregulated, the use of genetic risk information could greatly strengthen the ability of insurers to exclude the illness-prone from their risk pools, or charge them premiums equivalent to the costs of their potential treatments. Again however, insurance reform legislation is almost certain to be passed with a year that will ban “risk-rating” and excluding clients with “pre-existing conditions.” These two reforms will likely reduce the number of insurance companies in the country by half or more, and make genetic discrimination in health insurance a more or less moot point. Some have suggested further that the pervasiveness of genetic information will make private health insurance impossible; to which I say, good riddance.[11]
There are undoubtedly many other nefarious uses to which knowledge of someone’s genetic make-up can be put, and the confidentiality protected. But genetic information is only one small category of the information about our lives which is potentially in the public domain, and potentially injurious. The regulation of genetic technology really has very little to do with whether we establish the parameters of data privacy in the 21st century that I hope we will.
Gene Angst 5 : Systematically Bad Decisions by Parents for Children
The right to a “custom-made child” is merely the natural extension of our current discourse of reproductive rights. I see no virtue in the role of chance in conception, and great virtue in expanding choice. To reiterate my starting points, embryos and fetuses are biological property and parents should be allowed to modify or terminate them as they see fit, within broad social constraints. If women are to be allowed the “reproductive right” or “choice” to choose the father of their child, with his attendant characteristics, then they should be allowed the right to choose the characteristics from a catalog.
What then are the broad social limits to be placed on parents genetic decisions? It is obvious that our polity can and should place limits on the genetic decisions parents make. Glover (1984: 35) asks, for instance, what if a religious minority were to engineer a sign of their faith on their children’s foreheads, and engineer their brains to be incapable of reading in order to prevent apostasy? Certainly I would accept an intervention against parents who wanted to systematically deprive their children of abilities, though I am not so certain about the religious symbol.
Or take the case of sex selection. While we may find gender-biased parents distasteful, it clearly preferable that parents bear and raise wanted children rather than unwanted children, and it is their right to decide which are which. But it becomes a matter of public concern if parents’ decisions cumulate to undesirable outcomes, such as sex imbalanced populations[12]. There is ample evidence that prenatal diagnosis in China and India (Kusum, 1993) leads to almost exclusive abortion of female fetuses. While American parents’ preferences as to their children’s gender is much more balanced, what if it wasn’t and the technology became widespread? The first thing to note is that the polity would be aware almost immediately that there were more boys being born than girls, and have several years to think about policy responses. As I suggested above, my preference would be financial incentives to pursue other choices, rather than coercion. The point is that we would have ample opportunity to confront these challenges as we proceed, and need not impose hasty preemptive bans.[13]
Gene Angst 6 : Discrimination Against the Disabled
Opponents of sex selection and of eugenic efforts against genetic disease argue that these decisions are acts of prejudice against women and the disabled, and perpetuate the second class status of women and the disabled by focusing on genetic rather than social amelioration. Again, embryos and fetuses are not persons, and therefore their rights cannot be violated as persons or as members of oppressed social groups. While parents may make reproductive decisions for many reasons we disapprove of, such as aborting a fetus because the father was accidentally of the “wrong” race, this is not a reason to intervene.
The alleged link between choosing to abort a disabled child, or correcting their disability through genetic therapy, and the perpetuation of oppression of the disabled seems tenuous at best. Perhaps by reducing the population of disabled we reduce their power at the ballot box. But a parent’s moral obligation to give their children the greatest quality of life, and the fullest range of abilities, includes not only the obligation to treat a disabled child with respect and love, but also the obligation to keep them from having disabilities in the first place.
Gene Angst 7 : Unequal Access, Priority Setting and the Market
As a social democrat, one of my gravest concerns is how social inequality will constrain access to genetic technology, and how genetic technology may reinforce social inequality. Establishing the appropriate balance of state and market in genetics starts with the creation of a national health budget, most likely through the creation of a national health system. Such a system allows the ethical determination of utility trade-offs,[14] from what the level of health care expenditures should be, to what should be included in the basic package of guaranteed medical services and what consigned to the private medical market
If we had such a system, I don’t think most fertility treatments would make it, nor positive genetic “enhancements.” On the other hand, genetic screening and corrective genetic therapy would clearly be socially acceptable and cost-effective. This leaves me in a quandary; I want fertility treatments and positive genetic enhancement to be legal and available, but I’m not prepared to argue that they are a social right worthy of public subsidy. Yet, if they are left in the market, only the wealthy will have access to them, with the upper-classes having more life opportunities and potentially becoming genetically healthier and more intelligent.
These problems are really a sub-category of larger task of determining which medical tests and procedures should be:
- required by law, e.g. vaccinations
- publicly funded, but not obligatory, e.g. abortion in progressive states
- encouraged, but unsubsidized, e.g. exercise
- discouraged, but not banned, e.g. smoking
- banned., e.g. heroin
Any assignment of genetic technologies to the categories between obligatory and forbidden allows for potential inequality. Most opponents of genetic technology, when pressed, would stop short of banning these technologies out-right, and thus leave them to be inequitably distributed by the market. At the other extreme, there are no audible voices calling for a program of mandatory, universal genetic redesign[15]. This leaves me with Glover in the usual social democratic, mixed market middle: try a little public, and a little private, and we will tinker with it as we proceed.
A parallel, and very intriguing, question is whether, when, and by whom genetic products may be owned, patented and profited from. Genetically designed animals began to be patented in 1987. Congress has rejected the patentability of human beings, but the Patent Office has accepted the principle that parts of the human genome may be patented once their functions have been determined.[16] The Bush administration’s NIH attempted to protect future commercial and scientific research by patenting stretches of DNA which had been decoded, but whose function had not been identified, raising the additional question of what the proper role is for public property in genetics. Human Genome Project scientists have entered into lucrative commercial biotechnology ventures, profiting from their publicly-funded research (Fisher, 1994).
Again, the social democratic muddle is that there must be sufficient protection of genetic products encourage innovation, while at the same time there must also be a strong presumption in favor of public ownership of genetic code and medical knowledge as the common property of humanity.
Gene Angst 8 : The Decline of Social Solidarity
Finally some critics suggest that parents would become alienated from their genetically engineered children. Dator (1989) and other post-humanists suggest that genetic engineering and other technologies may create conflict between humans and post-humans, and threaten social solidarity. I think this is a serious concern, and one goal of the social regulation of genetic technology would be to moderate the rapidity with which society genetically advances and diversifies. The gaps between the bodies and abilities of parents and children should not be so great as to make parenting impossible. Also unenhanced public’s concerns will inevitably be a factor in regulating the enhancement of the modified minorities. While some of these conservative concerns may be warranted, if the enhanced feel they have no responsibility to the unenhanced and seek to dominate or exploit them, we must also avoid allowing simple chauvinism and fear of the unknown to stop genetic enhancement.
While tremendous social conflicts can be imagined, they are not that different from the conflicts between ethnic minorities and majorities, or between the First World and the Third, or between social classes. Like other sources of social division, the relations between new communities of the genetically (un)modified will hopefully be mediated by the same institutions, courts and legislatures, minority rights and majority rule. The real challenge faced by a post-human ethic is to define new parameters for which forms of life should be considered property, social wards (neither property nor competent persons, such as children), and persons with full citizenship.
Conclusion
In the midst of a current health care debate, with ethicists and humanists urging us to embrace financial and existential limits, and give up the quixotic quest for immortality, the post-humanists say “Some alive today may never die.” The potential problems created by new medical technology are numerous, and we must work hard to ensure that our societies are such that they create more good than harm. But I believe this an achievable goal, and that genetic technology offers, if not immortality, such good that the risks are dwarfed. Like all speculation (and all utilitarian judgments are based on social speculation) this optimism is founded on numerous points of faith. But I find faith in the potential unlimited improvability of human nature and expansion of human powers far more satisfying than a resignation to our current limits.
Bibliography
Anderson, W. T. 1987. To Govern Evolution: Further Adventures of the Political Animal. Harcourt Brace Jovanovich.
Attanasio, J. B. 1986. The Constitutionality of Regulating Human Genetic Engineering: Where Procreative Liberty and Equal Opportunity Collide. U. of C. Law Rev 53 (4): 1274–1306.
Berger, E. M., and B. M. Gert. 1991. Genetic disorders and the ethical status of germ-line gene therapy. J of Med and Phil 16 (6): 667–684.
Bonnicksen, A. L. 1994. National and International Approaches to Human Germ-Line Gene Therapy. Politics and the Life Sciences (Feb): 39–49.
Capron, A. M. 26 June 1983. Don’t Ban Genetic Engineering. Washington Post,
Carmen, I. H. 1992. Debates, Divisions and Decisions: Recombinant DNA Advisory Committee (RAC) Authorization of the Human Gene Transfer Experiments. Am J of Human Genetics 50: 245–260.
— -. 1993. Human Gene Therapy: A Biopolitical Overview and Analysis. Human Gene Therapy 4: 187–93.
Cook-Deegan, R. 1994. The Gene War. Norton.
Dator, J. 1989. What Do “You” Do When Your Robot Bows, As Your Clone Enters Holographic MTV? Futures 21 (4, August): 361–365.
de Wachter, M. A. M. 1993. Ethical Aspects of Human Germ-Line Gene Therapy. BioEthics 166–175:
Devall, B., and G. Sessions. 1980. The Deep Ecology Movement. Natural Resources J 20:
Durfy, S., and A. E. Grotevant. 1991. Scope Note 17: The Human Genome Project. Kennedy Institute of Ethics Journal 1 (4): 347–362.
Duster, T. 1990. Backdoor to Eugenics. London: Routledge.
Firestone, S. 1970. The Dialectic of Sex: The Case for Feminist Revolution. NY: William Morrow.
Fishman, R. 1993. Patenting Human Beings: Do Sub-Human Creatures Deserve Constitutional Protection? American Journal of Law and Medicine XV (4): 461–482.
Fletcher, J. C. 1985. Ethical Issues In and Beyond Prospective Clinical Trials of Human Gene Therapy. J Med Phil 10 (3): 293–309.
— -. 1974. The Ethics of Genetic Control: Ending Reproductive Roulette. Garden City, NY: Doubleday Anchor.
Fletcher, J. 1979. Ethics and Amniocentesis for Fetal Sex Selection. NEJM 301:
Fletcher, J. C., and W. F. Anderson. 1992. Germ-Line Gene Therapy: A New Stage of Debate. Law, Medicine and Health Care 20 (1–2): 26–39.
Fletcher, J. 1979. Humanhood: Essays in Biomedical Ethics. Buffalo: Prometheus.
Glover, J. 1989. Ethics of New Reproductive Technologies: The Glover Report to the European Commission. DeKalb: Northern Illinois Univ. Press.
— -. 1984. What Sort of People Should There Be?: Genetic Engineering, Brain Control and their impact on our future world. Penguin.
Greenough, B. S. 1994. Breaking the Genetic Code. Newsweek (April 4): 32.
Haraway, D. 1985. A Manifesto for Cyborgs: Science, Technology and Socialist Feminism in the 1980s. Socialist Review 15 (80): 65–107.
Hardison, O. B. 1990. Disappearing Through the Skylight: Culture and Technology in the Twentieth Century. Penguin USA.
Heins, V. 1991. Genetic Engineering. Capitalism. Nature, Socialism 2 (2, June):
Hubbard, R., and E. Wald. 1993A. The Eugenics of Normalcy: The Politics of Gene Research. The Ecologist 23 (5): 185–191.
— -. 1993B. Exploding the Gene Myth: How Genetic Information is Produced and Manipulated by Scientists, Physicians, Employers, Insurance Companies, and Law Enforcers. Boston: Beacon Press.
Illich, I. 1975. Medical Nemesis: The Expropriation of Health. London: Calder and Boyars.
Journal of Medical Ethics. 1990. Briefings in Medical Ethics: Gene Therapy. J Medical Ethics 7 (Dec): S1-S4.
Kass, L. Implications of Prenatal Diagnosis for the Human “Right to Life”. In Ethical Issues in Human Genetics. by Bruce Hilton et al.ed.(1973).
— -. 1979. ‘Making Babies’ Revisited. The Public Interest 54, Winter:
— -. New Beginnings in Life. In The New Genetics and the Future of Man. by Hamilton, Michael P.ed.Eerdman’s Pub. Co. (1972).
Keenan, J. F. 1990. What is morally new in genetic manipulation? Human Gene Therapy 1: 289–298.
Keller, E. F. 1991. Decoding the Human Genome Project. Socialist Review (2): 127–135.
Krimsky, S. 1990. Human Gene Therapy: Must We Know Where to Stop Before We Start? Human Gene Therapy 1 (2): 171–73.
Lantos, J. D. 1992. Why children without growth hormone deficiency should not be treated with growth hormone. Growth, Genetics and Metabolism 8 (Supp 1): 68–70.
Ledley, F. D. 1991. Clinical considerations in the design of protocols for somatic gene therapy. Human Gene Therapy 2 (1): 77–83.
Ledley, F. D., B. Brody, C. A. Kozinetz, and S. G. Mize. 1992. The challenge of follow-up for clinical trials of somatic gene therapy. Human Gene Therapy 3 (6): 657–63.
Martin, E. 1990. Toward an Anthropology of Immunology: The Body as Nation State. Medical Anthropology 4 (4): 410–426.
— -. 1987. The Woman in the Body: A Cultural Analysis of Reproduction. Beacon Press.
Marx, K. 1848. Economic and Philosophic Manuscripts of 1848.
Mauron, A., and J. Thevox. 1991. Germ-line Engineering: A Few European Voices. J Med Phil 16 (6): 649–666.
Miringoff, M. 1991. The Social Costs of Genetic Welfare. Rutgers University Press.
Morales, P. 1991. Pissing in the Gene Pool. Processed World 28: 34–40.
More, M. 1990. Transhumanism: Towards a Futurist Philosophy. Extropy Summer (6): 6–11.
Moseley, R. 1991. Commentary: maintaining the somatic/germ-line distinction: some ethical drawbacks. J Med Phil 16 (6): 641–7.
— -. 1992. Ethical implications of a complete human gene map for insurance. Business and Professional Ethics Journal 10 (Winter): 69–82.
Munson, R., and L. H. Davis. 1992. Germ-line therapy and the medical imperative. Kennedy Institute of Ethics Journal 2: 137–158.
Naess, A. 1986. The Deep Ecology Movement. Philosophical Inquiry 8:
— -. 1973. The Shallow and the Deep Ecology Movements. Inquiry 16: 95–100.
Nozick, R. 1974. Anarchy, State and Utopia. Basic.
Porter, J. 1990. What is morally distinctive about genetic engineering? Human Gene Therapy 1 (4): 419–24.
President’s Commission for the Study of Ethical Problems in Medicine and Bio-Medical and Behavioral Research. 1982. Splicing life: a report on the social and ethical issues of genetic engineering with human beings.
Proctor, R. Genomics and Eugenics: How Fair is the Comparison? In Gene Mapping: Using Law and Ethics as Guides. by Annas, George, Elias, Sherman.eds.Oxford Univ Press (1993): 57–93.
Ramsey, P. 1978. Ethics at the Edges of Life. Yale University Press.
— -. 1970. Fabricated Man: The Ethics of Genetic Control. Yale University Press.
Rifkin, J. 1983. Algeny-A New Word, A New World. Penguin.
— -. 1992. Beyond Beef: The Rise and Fall of the Cattle Culture. NY: Dutton.
— -. 1987. Time Wars. Touchstone.
Robertson, J. A. 1994. The Question of Human Cloning. Hastings Center Report 24 (2, March): 6–14.
Rothman, B. K. 1988. Recreating Motherhood: Ideology and Technology in Patriarchal Society. Norton.
Shweder, R. Genetics and Human Behavior II: Philosophical and Ethical Issues. In Encyclopedia of BioEthics. by MacMillan (1994).
Stapledon, O. 1930. Last and First Men. London: Methuen.
Sterling, B. 1985. Schismatrix. NY: Arbor House.
Suzuki, D., and P. Knudston. 1989. Genethics: The Clash Between the New Genetics and Human Values. Cambridge, MA: Harvard Univ. Press.
Wagar, W. 1989. A Short History of the Future. Chicago: University of Chicago Press.
Winner, L. 1986. The Whale and the Reactor: A Search for Limits in an Age of High Technology. Chicago: Univ. of Chicago Press.
Zimmerman, B. K. 1991. Human germ-line therapy: the case for its development and use. J Med Phil 16 (6): 593–612.
[1] For alarmists on the Left, for instance Keller, 1991; Heins, 1991; Morales, 1991; Klein, 1991; Miringoff, 1991; and Hubbard and Wald, 1993a, 1993b. For alarm among bioethicists, broadly defined, some of whom are also leftist, see for instance Lappé, 1972, 1987; Kass, 1972, 1973, 1979; Ramsey, 1970. 1972, 1978; Duster, 1990; and the position paper of the Council for Responsible Genetics on Human Germ-Line Manipulation, 1992.
[2] See for instance the report to the European Parliament made by Glover (1989) and a pan-European ethics committee on the regulation of reproductive technology.
[3]Coined in a novel by cyberpunk theorist Bruce Sterling in his 1985 novel Schismatrix, and adopted now 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.”
[4]Many of these goals may be achieved by other technologies, alone or in combination with genetic control, such as cybernetics and prosthetics.
[5] The physicist and science fiction writer David Brin suggests that such an obligation should also extend to sentient animals. He proposes an “ethic of uplift” in which humans were responsible for the genetic modification of near-intelligent mammals and cetaceans to increase their intelligence and ability to communicate.
[6] A 1987 survey of Americans by the 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.” Not that public opinion has often molded my views in any way but negative…
[7] Mauron and Thevox (1991) make a similar distinction between Europan critics who are “pessimists” and “optimists” about genetic technology, the former objecting to the technology itself, and the latter raising only pragmatic concerns.
[8]Arne Naess (1973) and Devall and Sessions (1980) are the modern touchstones for this over-lapping deep ecological philosophy, though movements like Earth First! have been more radical in taking the argument to its reductio ad absurdum. For a reasoned argument in favor of eco-management see Anderson (1987).
[9] See the 1993 position paper of the Council for Responsible Genetics for a sober assessment of the inadequacy of our regulatory approach to this issue, and their call fora moratoria on release until we have adequate oversight.
[10] See Nozick (1974) for a discussion of a radical libertarian approach to the externalities of genetic engineering.
[11] See Murray (1993) for a report of the wonderful recommendations of federal Task Force on Genetic Information and Insurance, issued May 1991. The Task Force was enpaneled by the Human Genome Project’s Working group on Ethical, Legal and Social Issues, and included representatives of bioethics, disease organizations, and insurance companies. Nonetheless the panel recommended universal access to insurance, and that genetic screening not be used to deny insurance. It did not go that next step to call for a ban on genetic screening or pre-existing condition exclusions, and for community-rating for insurance.
[12] It still isn’t obvious to me what the problem is with sex imbalance in the population. We might just adopt new sexual and family forms. And the market would suggest that balance would be re-established since rare things are more valued.
[13] For an early bioethical defense of sex selection, see Fletcher 1979.
[14] The Oregon experiment is a reasonable approximation of what this accounting would look like, though it was only applied to the poor.
[15] See Wagar (1989) for speculation about different policies that future governments might adopt toward eugenic improvement, including a government program of general genetic redesign.
[16] See Fishman’s 1993 article “Patenting Sub-Human Beings…” for a detailed discussion of the current status of animal and human genetic patents, and the confused future status of intermediate transgenic species. She proposes an amendment to the Patent Act defining “human being” as either a being possessing one of a number of higher cognitive faculties not yet found in other primates, or the progeny of a human mother and human father (a somewhat tautological formula).
