Designer Babies Research Paper

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Abstract

The phrase “designer babies” can indicate a range of genetic interventions from disease-preventing embryo selection to genetic modiﬁcations aimed at providing enhanced traits and abilities. In this range, enhancements raise the sharpest ethical questions. Five of the leading questions are examined here: (1) Will genetic modiﬁcations risk the health of the resulting children? (2) Will modiﬁcations reduce the willingness of parents to love and accept their children? (3) Will genetically modiﬁed individuals suffer a reduced sense of freedom or self-esteem? (4) Will genetic interventions heighten social injustice? (5) Does human genetic engineering amount to a sinful “playing God”?

Introduction

The phrase “designer babies” is used to describe parents’ use of reproductive and genetic technologies to have a child with qualities of the parents’ choosing. But the phrase is both imprecise and pejorative. It is imprecise because it places under one heading a range of genetic interventions with very different technical qualities and ethical implications. It is pejorative because it equates what may sometimes be serious efforts to prevent genetic disease and improve the genetic inheritance of our offspring with the frivolous selection of fashion items.

Range Of Meanings

If the phrase “designer babies” designates any effort to shape a child’s genetic inheritance, it can apply to several quite different forms of genetic intervention and human genetic engineering. These stand along a continuum involving different degrees of intrusiveness and different ethical questions. At the most conservative and least questionable end of the spectrum is the use of preimplantation genetic diagnosis (PGD) to select against serious disease traits among a group of embryos produced by in vitro fertilization (IVF). Since the early 1990s, PGD has been widely used to select embryos not carrying the gene sequences for fatal disease conditions such as Tay-Sachs disease or Lesch-Nyhan syndrome, both of which cause early death during infancy or childhood. In 2006, Britain’s Human Fertilisation and Embryology Authority (HFEA), that country’s unique national agency for the authorization of genetic interventions, announced that it would permit the use of PGD to assist couples avoid the birth of children with mutations in the BRCA1 and BRCA2 genes. Because these genes usually cause cancer only later in life, this decision was criticized as a ﬁrst step in the direction of “designer babies” and the quest to have “perfect” children, but the decision nevertheless remains squarely within the least controversial region of genetic selection: preventing disease.

More controversial is the use of PGD for non-disease traits. At one edge of this range is the use of PGD to select embryos with the same HLA tissue type as an existing sibling suffering from a fatal disease and for whom the embryo, once born, can serve as a bone marrow donor.

After initially prohibiting the creation of such “savior children” in the Whitaker case in 2002, the HFEA revised its policy in 2004. Although the selected embryo in such cases may not be at risk for the genetic disease, the use of its tissue to save the life of a sibling theoretically places this kind of intervention in the camp of acceptable disease prevention genetic interventions. However, this does not eliminate the attendant ethical dimensions. But more controversial is the use of PGD for sex selection in cases where no sex-linked genetic disease is involved. This has still not been approved by Britain’s HFEA because many see it as a signiﬁcant and objectionable step across the line to designer babies. However, in the less regulated US environment, PGD for sex selection is widely practiced, with approximately 10 % of reproductive medicine facilities reporting that they offer this service for family balancing reasons.

As currently practiced, PGD is limited to selection of embryos with traits inherited from the biological parents. Sometime in the future, however, genetic technologies will permit the modiﬁcation of the gene sequences either in the parental gametes (sperm or eggs) or in the embryo or fetus itself. This will permit clinicians to introduce gene sequences not present in the parental DNA. Several technologies are currently being reﬁned which can permit this. They include the use of various gene-editing techniques, from homologous recombination and zinc-ﬁnger nucleases to the production of human artiﬁcial chromosomes (HACs). Recently, the addition of CRISPR-Cas9 gene editing has brought targeted gene modiﬁcations much closer to reality.

With gene editing, reproductive clinicians will be able to assist parents carrying genetic diseases to avoid adoption or gamete donation and have children with the parents’ own genetic makeup but without the harmful familial sequences. At the same time, this technology will also make possible the introduction of novel sequences having nothing to do with disease, opening the possibility of gene enhancement and designer babies in the most commonly used meaning of this term.

With the exception of gene modiﬁcations inserted late in a pregnancy and targeted only at developed organs in the fetus, preconception and prenatal gene editing constitute germline as opposed to somatic gene modiﬁcation. Because they affect all the cells in the resulting embryo or fetus’s body including sex cells, these changes will be inherited by future generations. Mistakes or errors made in this process would have the effect of introducing new genetic diseases into the human gene pool. For this reason, many countries that permit somatic cell gene therapy have banned germline therapy.

Thus, we have a complex array of possibilities forming a series of binary oppositions and zones of differing ethical questionability. These binaries include selection versus gene modiﬁcation, somatic versus germline interventions, and interventions aimed at preventing disease versus gene enhancements which seek to provide improved traits and abilities. We can deﬁne diseases as conditions below the level of species normality that signiﬁcantly increase one’s likelihood of suffering disability or death (Gert et al. 2006). Treatments for disease aim at bringing the affected individual up to the level of species normality. Insulin therapy for diabetes is one example. Enhancements, in contrast, are interventions that raise the individual above the level of species normality, making one “better than well.” Gene modiﬁcation at the embryonic level aimed at producing a child with higher than normal IQ or one with 20/10 vision would be gene enhancements. Somewhat complicating this schema are preventions. These, too, aim at bringing the individual above the level of species normality. Vaccines ﬁt into this category. Most human beings suffer illness when exposed to the polio virus. A vaccine to protect the individual against polio infection, or a gene modiﬁcation with the same effect, thus constitutes an enhancement. But because preventions are disease related, they are reasonably classed with treatments.

With this schema in mind, we can see that the most problematical interventions associated with the phrase “designer babies” are germline genetic modiﬁcations offering non-disease-related improvements in the child’s bodily and mental condition. Gene selection and gene modiﬁcations aimed at treatment, even at the germline level, raise fewer questions because the risks involved in the treatment, whether for the individual or society, are offset by the objective of preventing or remedying harmful disease conditions. But modiﬁcations that have enhancement as their goal potentially impose or are associated with harms that are not as easily justiﬁed in terms of preventing suffering. We can think of these as pure enhancements. Examples include gene modiﬁcations aimed at improving a child’s physical appearance (cosmeticogenomics), height, athletic abilities, memory, or IQ. These enhancements raise the sharpest ethical concerns and fuel objections to the idea of designer babies.

Pure Enhancements: Five Concerns

Bioethicists and others who have discussed human genetic interventions have identiﬁed at least ﬁve major areas of ethical concern. The most heated debates about designer babies take place within each of these areas.

Health Risks

Since the ﬁnal sequencing of the three billion base pairs of the human genome in 2003, it is becoming more and more clear that the genome is an exquisitely complex phenomenon. Researchers had expected up to 100,000 genes, the actual coding sequences that produce the proteins that form the body’s structure and chemistry, but they found only a quarter of that number. The complexity of the human body and brain is now seen to result from the modular nature of the genome whose components interact with one another and with interior and exterior bodily environments. For example, the expression of one gene can be inﬂuenced by other coding and noncoding promoter regions in the genome as well as by the multiple environments in which the genome operates. The genome may thus be thought of as a vast symphony orchestra, each of whose players and instruments is attuned to the others and to the audience.

In view of this complexity, many people worry that even the most scientiﬁcally well-founded modiﬁcations may have untoward effects elsewhere in the genome and thus harm not only the individual in whom the modiﬁcation is made but also that individual’s descendants. In 2001, a team of French researchers utilized somatic gene therapy to correct a life-threatening immune disorder (X-SCID) in a group of 10 boys. Nine of the ten children treated responded successfully to the therapy, regaining immune function, but two of the nine developed leukemia as a result of the misinsertion of the corrected sequences into a cancer-promoting region of the genome (HaceinBey-Abina et al. 2003). On balance, this was a successful experiment, but it shows the risks of meddling in the genome, especially when errors are likely to have generational consequences. Furthermore, what was acceptable in a case of disease treatment here, and which might be permissible even for germline gene therapy, becomes extremely questionable if the objective is to introduce pure enhancements.

Health concerns, however, will almost certainly decline in importance as genomic research moves forward. As opposed to the use of viral vectors to carry the corrected sequences as in the French X-SCID research, new gene-editing techniques like CRISPR-Cas9 hold out the promise of precise and targeted sequence replacement. The greatly lowered cost of gene sequencing – from $3 billion for the ﬁrst human sequence to around $1,000 at present – means that we will soon have in hand thousands or millions of human genomes with their associated phenotype and health-related information. This will aid in the identiﬁcation of naturally existing and time-tested sequences that offer the beneﬁts sought by gene modiﬁcations.

Many research-related risks will have to be addressed before an intervention is introduced, such as how low the risk of harm must be and how one elicits parental consent for novel interventions. It will also be necessary to establish long-range (possibly multigenerational) follow-up of such interventions. In addition, approaches already existing that permit the reversal of gene modiﬁcations through the administration of drugs or use of RNA interference technology may be required. Nevertheless, it remains high likely that at some point in the future gene modiﬁcations will be judged safe enough for clinical utilization. This will begin at the level of disease treatment and, when interventions prove safe, move on toward pure enhancements.

Effects On Families

For almost a century, science ﬁction literature has critically presented human genetic engineering as a threat to the integrity and emotional value of the family. Aldous Huxley’s 1932 novel Brave New World depicts a social order where family based reproduction is replaced with the industrial production of children according to a strict hierarchy of genotypes, from Alpha leaders through low-caste Epsilon workers. Brave New World’s vision is deeply disturbing. Because the family is the last bastion of emotional warmth and unconditional acceptance in a technological world based on rigorous performance evaluations, anything that threatens it touches a deep emotional chord.

Critics fear that human genetic engineering will insert a market mentality into the family. In the words of a report issued by the Washington, D.C.-based Genetics and Public Policy Center, “Some believe germline genetic modiﬁcation and other reproductive technologies will change the nature of the love parents have for their children by making children a commodity that parents have produced to their speciﬁcations rather than a gift to be loved ‘to the point of irrationality’” (Fukuyama 2002). Will parents reject or fail to bond with children who do not meet their speciﬁcations? Will the reproductive equivalent of “lemon laws” be introduced allowing parents to cast off children who don’t exhibit desired traits?

Some poorly counseled parents may well respond in this way, but there are many reasons why this is unlikely to be a typical result of genetic interventions. For one thing, as biology students have long been taught, “genotype does not equal phenotype.” So many factors and uncertainties lie between a genetic sequence and its physical expression that few genetic modiﬁcations will produce exactly the outcome that parents want. Well-counseled parents – and such counseling should be mandatory – will accept their child however it may turn out.

In addition, we can rely on the sheer power of parental love to minimize these concerns. Parents tend to love and bond to their child, no matter how much the child conforms to or disappoints the parents’ pre-birth expectations. Those who wish for abled children accept and love disabled ones, and parents who try to have enhanced children will accept and love average or disabled ones. In other words, the very parental love that critics see as imperiled by genetic engineering may also the best protection against its erosion. However, we would never really know how events would play out until the technologies become available for use.

Freedom And Self-Esteem

One of the leading criticisms of human genetic engineering is that it will compromise the freedom, autonomy, and self-esteem of genetically modiﬁed human beings. Under this heading lie several distinct concerns. One powerful argument sees a parent’s genetic modiﬁcation of the child as a form of unconsented coercion by one person of another. Drawing on his own communicative ethics (with echoes of Kant’s ideas of autonomy and the treatment of others as ends in themselves), the philosopher Jürgen Habermas makes this argument:

As soon as adults treat the desirable genetic traits of their descendants as a product they can shape according to a design of their own liking, they are exercising a kind of control over their genetically manipulated offspring that intervenes in the somatic bases of another person’s spontaneous relation-toself and ethical freedom. This kind of intervention should only be exercised over things, not persons. (2003)

He adds,

Eugenic interventions aiming at enhancement reduce ethical freedom insofar as they tie down the person concerned to rejected, but irreversible intentions of third parties, barring him from the spontaneous self-perception of being the undivided author of his own life. (2003)

Not too differently, various critics of gene modiﬁcation have drawn on Joel Feinberg’s concept of “the child’s right to an open future” to argue that each person has a right to choose his or her own vocation, lifestyle, and governing values, talents, and propensities (1980). When parents impose their own visions of what the grown child’s life should be and shape that life by imposing genetic modiﬁcations, they violate this right. That parents profoundly shape their children’s lives all the time through their choices on the number, spacing, environment, and education of their offspring is not a decisive reply to these concerns. As Habermas observes, many other inﬂuences, such as the choice of a child’s religion or educational institutions, have effects that the grown person can freely reverse. Genetic modiﬁcations, in contrast, are “hard wired” and less changeable.

Habermas and many others who share his views are comfortable with the prospect of genetic engineering, even germline modiﬁcations, when these aim at the treatment of prevention of disease. Once again, it is pure enhancements that earn their contempt. The logic here, openly stated by Habermas, is that because disease is so limiting of our abilities, we can presume that the grown child will freely accept whatever changes parents make to facilitate a healthy life. The governing norm here is the presumed free and informed presumed consent of the future person.

But if that is so, why cannot many pure enhancements also meet this test? If I give my child above average 20/10 vision in the hope that, like Tiger Woods who used LASIK surgery for this purpose, this will improve her chances of becoming a championship golfer, how have I limited her governing values, talents, and propensities? The child may choose, instead, to become a skilled airplane pilot, or she may make no use of this superior ability. Enhancements that improve abilities, ranging from a more attractive physical appearance to improved cognitive abilities, do not seem to detract from the openness of her future. So long as genetic modiﬁcations do not impose disabilities on the child, they seem capable of meeting the norm of free and informed presumed consent of the future person.

Some critics see the pressure that parents are likely to impose on a genetically modiﬁed child as the principal freedom-limiting effect here. After all, if parents have gone out of their way to pay for a costly genetic procedure, whether it is selection through PGD or a gene-editing modiﬁcation, they will understandably want the child to embody the life they have envisioned for her. The “golfer child” will thus be subject to unrelenting pressure to play and excel at the game, even though this may be far from her actual talents or real interests. It might be argued that there is nothing new here. Parents have always imposed selﬁsh or unrealistic dreams on their children. But the power and promise of gene modiﬁcations does seem to increase the likelihood of this happening. Once again, mandatory counseling may help relieve this problem, but the worry remains real.

There is, however, another side to this concern. As Joel Ruddick has observed, parents are not just “guardians” of their child’s future freedom and well-being; they also play a role as “gardeners.” For better or worse, parents create and shape their child’s values, aspirations, and life goals. If I introduce my daughter to golf at a young age and encourage her involvement and expertise in the sport, I both exert pressure on her and also open up a world of opportunities not available to a child with a less-involved parent. Gene modiﬁcations at the start of her life may increase this pressure. But by genetically enhancing her abilities – offering improved vision or better hand-eye coordination – I may also be facilitating the very achievements at which I aim. A genetically enhanced child could experience psychological distress through increased parental pressure, but the same child may also experience an improved home environment as she lives up to parental dreams better than a child deprived of the added abilities. Which of these dynamics is likely to prevail remains open to question.

Finally, apart from the impact on freedom, some critics have pointed to the effects of gene modiﬁcations on the grown person’s sense of freedom and self-esteem. The problem is well stated by Bill McKibben:

If my parents had somehow altered my body so that I could run more quickly, that fact would .. . have robbed it of precisely that meaning I draw from it. The point of running, for me, is not to cover ground more quickly; for that, I could use a motorcycle. The point has to do with seeking out my limits, centering my attention: ﬁnding out who I am. But that’s very difﬁcult if my body has been altered. If the “I” and the Sweatworks 2010 GenePack are entwined in the twists of the double helix. And if my mind has been engineered to make me want to push through the pain of running, or not notice it at all, then the point has truly vanished. (2003)

Each of our achievements results from some compound of the native gifts we possess and the hard work and dedication we put into realizing their promise, although we know that even some of that work and dedication may result from genetic factors. McKibben’s argument seems to rest on the assumption that since I don’t know my precise array of natural abilities, I can validly take credit for how I have used them. But this argument is unpersuasive on two counts. First, if am genetically unmodiﬁed and I don’t know the exact role that any powerful genetic factors have played in my achievements, how can I assume that it was my free effort and willed commitment that accounts for my achievements? Why must I assume that I am any less genetically determined than someone who has been modiﬁed for that purpose? Second, if I have been genetically modiﬁed and have used my given abilities to great effect, why can’t I take pride and pleasure in that? Why must I discount the role played by my own added dedication and hard work? Certainly, Shaquille O’Neal at seven foot one inch in height knows that he was born with an array of abilities that would be useful in a career in basketball. But neither O’Neal nor any of his fans believe that the athlete’s achievements are any less impressive. There are other reasons to worry about a world of genetically modiﬁed superstars. But the effects on these stars’ sense of achievement and self-esteem are not among them.

Social Justice

Because pure genetic enhancements do not involve the treatment or prevention of disease, at least during the early years of gene modiﬁcation research and implementation, they are not likely to be paid for by existing private or social insurance plans. Instead, parents will have to bear the cost. This creates the fear that people with money and power will have children with better genes who will use their enhanced abilities to make more money and accumulate more power, a dynamic that could lead to a widening social gap and the creation of what has been called a “Genenobility.” The problem is heightened if we take a global perspective and recognize that in broad stretches of the world, where many people lack resort to even minimal health care, it is unlikely that enhancement technology will be available. Some also fear that if this process continues for generations, it may even result in speciation: the separation of humankind into different breeding populations.

It is not clear how we should respond to these concerns. Some would argue that the threat to human equality here justiﬁes legally banning all genetic enhancements, but it is notoriously difﬁcult to prevent the existence of a black market in goods or procedures when people want them. As Mary Warren has observed, “Because the forbidden actions are not in themselves overtly harmful, many people will continue to believe—with a great deal of reason and justice—that they have a right to perform those actions; and many will continue to do so regardless of the law” (1985). This reasoning leads to what she calls the “paradoxes of unenforceable prohibitions.” A world of banned gene enhancements may lead to biomedical tourism on an expanding scale, with the very impacts on equality that critics fear. Alternatively, governments may choose to fund proven enhancements in order to diminish the destabilizing effects of inequality. Access to gene enhancements may come to be regarded as a right, on a par with access to vaccines or basic preventive medicine. One candidate for such a genetic intervention may be reading and computational abilities, since deﬁcits in these areas clearly slow an individual’s ability to advance in literate modern societies. If this direction is chosen, the availability of gene enhancements may actually reduce human inequality.

To these direct genetic effects on human equality, some critics add a concern about the social psychological effects of gene enhancements. Developing what he terms the “case against perfection,” Michael Sandel voices this:

A lively sense of the contingency of our gifts—a consciousness that none of us is wholly responsible for his or her success—saves a meritocratic society from sliding into the smug assumption that the rich are rich because they are more deserving than the poor. Without this, the successful would become even more likely than they are now to view themselves as self-made and self-sufﬁcient, and hence wholly responsible for their success. Those at the bottom of society would be viewed not as disadvantaged, and thus worthy of a measure of compensation, but as simply unﬁt, and thus worthy of eugenic repair. The meritocracy, less chastened by chance, would become harder, less forgiving. As perfect genetic knowledge would end the simulacrum of solidarity in insurance markets, so perfect genetic control would erode the actual solidarity that arises when men and women reﬂect on the contingency of their talents and fortunes (Sandel 2004)

Like so many arguments against human genetic control, Sandel’s position here evidences discomfort with an unfamiliar and novel state of affairs. It may reﬂect what is known as “status quo bias,” a preference for existing realities, however imperfect, and an aversion to change even if it promises new opportunities. On critical examination, we can see that Sandel’s depiction of the present reality omits many of its less-desirable features. Sandel assumes that our ignorance of our genetic inheritance increases our sense of solidarity with others, just as our risk of exposure to disease makes us willing to share the costs of health insurance. But while the shared threat of disease can foster solidarity in health insurance markets, Sandel offers no proof that shared exposure to genetic chance promotes our sense of social equality. Rather, our ignorance of the role that genetic chance or willed choice plays in our lives seems actually to promote human pride and make us unjustiﬁably take credit for what is often merely good luck. Fortunate and prosperous people usually ignore the contingency of their achievements. They regard themselves as self-made, and as long as they can get away with it, they resist efforts to make common cause with others. Rather than seeing themselves as merely the recipients of unmerited endowments, as Sandel believes, they take personal credit for everything they have accomplished.

If this is true, what effect might increase use of genetic technologies have on these attitudes? One answer may be gathered from the work of the philosopher John Rawls. Rawls is noted for his commitment to the goal of human equality as developed in his landmark book, A Theory of Justice. At the basis of Rawls’s well-known theory is his observation that none of the abilities we receive in life, from genetic abilities to beneﬁcial family situations, can be regarded as morally deserved. They result from what he calls the “natural lottery.” In a society committed to fairness, therefore, they cannot and should not be made the sole basis of one’s social and legal status or economic position. Following this logic, Rawls argues that people reasoning from an impartial standpoint in what he calls the “original position of equality” would advocate a principle requiring the redistribution of the basic social goods to assist those who have fared poorly in the natural lottery. He calls this the “difference principle.” It does not require strict equality in income, opportunities, or powers, since such inequalities may be needed to incentivize social productivity. But the touchstone of all such departures from strict equality is whether over time they improve the situation of the “least off” members of society.

When Rawls published A Theory of Justice in 1971, human genetic engineering was a remote prospect. Nevertheless, Rawls does mention the possibility not simply of redistributing the economic and social products of good genetic endowments, but the genes themselves. In one passage, Rawls states:

I have assumed so far that the distribution of natural assets is a fact of nature and that no attempt is made to change it, or even take it into account .. .. We should note, though, that it is not to the advantage of the less fortunate to propose policies which reduce the talents of others. Instead, by accepting the difference principle, they view the greater abilities as a social asset to be used for the common advantage. But it is also in the interest of each to have greater natural assets .. .. In the original position, then, the parties want to insure for their descendants the best genetic endowment (assuming their own to be ﬁxed). The pursuit of reasonable policies in this regard is something that earlier generations owe to later ones, this being a question that arises between generations. Thus over time a society is to take steps at least to preserve the general level of natural abilities and to prevent the diffusion of serious defects. (1971)

As the closing sentence in this remark indicates, Rawls does not envision using genetics to improve human abilities and his remark thus does not extend to gene enhancements. Like many other arguments, this one justiﬁes the use of genetics for the treatment and prevention of disease. Yet there is no reason to believe that in a world of enhanced human abilities, Rawls’s willingness to distribute or redistribute genetically shaped abilities would be conﬁned only to treatments or that his commitment to equality would not support the widespread distribution and social ﬁnancing of gene enhancements.

At a deeper level, Rawls’s insights here provide an important reply to Sandel, who believes that in the hands of society’s winners, the possibility of human genetic engineering will intensify pride, reduce human solidarity, and harden social lines and divisions. He ignores the fact that it is our ignorance about the genetic and more deterministic features of our lives that actually fosters the many complex and pernicious forms of prideful self-assertion he decries. However, a world in which the role played by genetics in our lives becomes far more transparent and where our ability to manipulate and distribute genes has grown may actually diminish human pride. In such a world, people following a Rawlsian logic may demand equal access to natural abilities needed for success, with the net effect that inequality may be reduced. It is hard to say which of these lines of reasoning – Sandel’s or Rawls’s – will prevail, but the point is that the impact of gene enhancement on social justice and human equality is by no means as clear as many critics believe.

A ﬁnal concern voiced in this regard is that human gene modiﬁcation will lead to the reappearance of eugenics. The eugenics movement ﬂourished in the United States and Europe during the ﬁrst decades of the twentieth century. In the movement’s heyday, its advocates passed laws requiring the sterilization of the “genetically unﬁt,” which in many cases led to grave injustices against economically and marginalized people whose condition was blamed on genes rather than on injustice or social oppression. Eugenics reached its zenith in Nazi Germany, where the T-4 “euthanasia” program led to killing by gas and other means of over 70,000 mentally or physically impaired people categorized as “life unworthy of life” (Lebensunwertes Leben). The thinking and personnel associated with this program culminated in the racially inspired genocide of the Holocaust.

Because the Greek term eugenics means literally “good genes,” some fear that the technology of gene modiﬁcation and gene enhancement will reanimate social pressures to “improve” the genetic proﬁle of society and reduce the incidence of “bad genes,” with the possibility of repeating all the past eugenic mistakes. No one, of course, can say that this will not happen, and we should probably never underestimate the powerful hold that genetic science combined with ancient concepts of “good” and “bad” blood have on people. But there is reason to think that advances in genetic science will not lead to a new eugenics. For one thing, the older eugenics was based on faulty science that attributed every form of individual and social pathology to genetic factors. If a person drank to excess or abandoned his family, this “proved” that he was genetically delinquent and a suitable target for sterilization. While scientiﬁcally based genetics will not necessarily eliminate discrimination, it will not support and may even undermine such crude expressions of prejudice.

Furthermore, what made the eugenics movement so especially dangerous was its alliance with coercive political power. It is that alliance, epitomized by the Nazi state, that must be avoided because when it is established, not only genetics but every function of society is likely to misused to grievous effect. The best insurance against the reappearance of eugenics in its horriﬁc twentieth century forms is to keep genetic decision-making ﬁrmly in the hands of parents and their doctors, not state authorities, insurers, or other social organizations. Some fear that this may not prevent the appearance of a “liberal eugenics” marked by subtle social pressures and parental wishes to conform. But harmful conformism is a more readily addressed problem than the terrible political abuses of the eugenics movement.

Playing God

The belief that genomic interventions are “unnatural,” contrary to God’s will, and a dangerously prideful use of science is widespread. In a 2004 poll of Americans’ attitudes toward reproductive testing, for example, over a third of those polled listed “playing God” as what most worried them in connection with human control of reproduction, while another third worried most about its use for the wrong purposes (Kalfoglou et al. 2004). Nevertheless, what these attitudes amount to in practice is not easy to determine. They do not appear to encompass genetic treatments and interventions. In a 1982 address at the Pontiﬁcal Academy of Sciences, Pope John Paul II observed that modern biological research “can ameliorate the condition of those who are affected by chromosomic diseases,” and he lauded this as helping to cure “the smallest and weakest of human beings … during their intrauterine life or in the period immediately after birth” (John Paul II, 1982). The Pope’s position here is consistent with the teaching of traditional Roman Catholic medical ethics that permits and encourages curative medical interventions. Since Catholic teaching holds that human life begins at conception, it prohibits the selection and discarding of embryos through PGD, but gene surgery, even that altering the germline, is ethically permissible and on a par with other forms of surgical or drug interventions used to prevent or cure disease. Catholics are not alone in these views, which are widely shared in the biomedical ethics of most major religious traditions.

What is it then that draws religious concern? John Paul II helped answer this when, in the same discourse in which he approved of medical genetic interventions, he urged avoidance of “manipulations tending to modify the [human] genetic store.” Thus, once again it is pure genetic enhancements that appear to be the focus of concern.

Within the Abrahamic religious traditions – Judaism, Christianity, and Islam – we can trace the source of this position to the belief that God created human beings in their ideal form. In the Bible’s Genesis account, this perfection is later disturbed by sin which brings in its train physical suffering, disease, and death. Following the fall, human beings must struggle to regain the divinely ordained perfection that marked their beginning, and these efforts warrant biomedical science and therapeutic or preventive interventions. But they do not justify enhancements that aim at taking the human body or mind beyond its created origin. The conservative bioethicist (and physician) Leon Kass expresses this view when he observes, “Man is the peak, both in possessing the highest, and also in possessing the complete range of, faculties of soul .. .. The story of the ascent of soul may already be complete” (1985).

But is this true? Is it correct that human biology has a ﬁxed, ideal reality? There are scientiﬁc and religious reasons for questioning this. Recent research has shown that the human genome is very much a work in progress, with new capabilities being added within the range of historical memory. One example is the shedding 5,000–6,000 years ago by northwestern European agriculturalists of the lactose intolerance that was and is the norm among most human populations. In order to survive, these cow and sheepherders had to digest milk beyond the period of infancy, and they developed gene sequences that enabled them to do so. Those of European background take it for granted that a glass of milk a day is good for you, but that is only because they are part of a newly evolved type of humanity. Another example is the relatively recent adaptation of a Han Chinese-descended population to the harsh conditions of life at high altitude on the Tibetan plateau (Huerta-Sánchez et al. 2014).

Religiously, it can be asked whether the healthy human genome is really an untamperable reality. Human beings have used technology to improve nature in many ways, from the cultivation of plants to animal breeding to the development of metallurgy. Why cannot the same technological skills be applied to our own genes? The Protestant ethicist Ted Peters believes that the Bible offers no warrant for believing the Creation was meant to be ﬁxed and unchangeable. Speaking from within the monotheistic Christian tradition, Peters observes, “The natural world depends on a divine creator who transcends it. Nature is not its own author, nor can it claim ultimate sanctity, or any other stature rivaling God.. .. Natural processes are not sacrosanct” (2003). Speaking from within the Orthodox Jewish tradition, the bioethicist Rabbi David Bleich states that there is “no evidence either from Scripture or from the rabbinic writings that forms of intervention or manipulation not expressly banned are contrary to the spirit of [Jewish] law” (Zoloth 2003). Some Jewish thinkers point to the fact of circumcision as evidence that human nature was not complete at Creation but can be improved by subsequent human interventions.

Conclusion

We cannot resolve all these ethical, scientiﬁc, or religious questions. The fact that there are thoughtful positions on all sides of these debates shows that even the most questionable forms of human genetic engineering – pure enhancements – are not without their religious, ethical, and scientiﬁc defenders. Human genetic engineering is almost certainly in our future. The science of genomics is proceeding too rapidly to prevent us from acquiring the information and skills needed to modify the human genome. The urgent question is whether the ﬁrst efforts in this direction take place illegally in an unsupervised black market or legally within authorized research programs with proper protections for parents and the children produced this way.

If the latter proves true, the debates outlined above offer several guidelines for minimizing harms. These are discussed at length in Babies by Design (Green 2007). Brieﬂy stated, they are:

Genetic interventions should always be aimed at what is reasonably in the child’s best interests.
Genetic interventions should be almost as safe as natural reproduction.
We should avoid and discourage interventions that confer only positional advantage. This guideline addresses interventions aimed only at competitive success. Such interventions – shown in their crassest form in sports doping – lead competitors to subject themselves to increased health risks, whether from drugs or risky gene modiﬁcations, for little beneﬁt because all competitors are soon compelled to do adopt them.
Genetic interventions should not reinforce or increase unjust inequality and discrimination, economic inequality, or racism. Neither race nor sex nor sexual orientation is a condition intrinsically needing genetic intervention. Any suffering resulting from these conditions derives from unjustiﬁed discrimination. If parents, in the effort to ease their child’s burdens, use genetic engineering to change the child’s skin color, sex, or sexual orientation, they risk fostering discriminatory attitudes and practices. In such cases, it is better to change social attitudes than to alter a child’s genes.

These guidelines are not complete. Future experience with human genetic engineering will certainly add to them. But with science and technology moving so fast, society should begin now reﬁning the norms (and prohibitions) needed to ensure that genomics serves and does not damage our common humanity.

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