Book Notes: Recent Works on the Promise and Peril of Genetic Engineering (2 of 4)

With this December issue of the Journal of Lutheran Ethics, we bring the second installment in our series of notes on books addressing genetic engineering. For interested readers, the first of these columns appeared in the September issue.

Works reviewed in this month’s column:

David B. Resnik et al., Human Germline Gene Therapy
Phillip Kitcher, The Lives to Come
Gregory Stock, Redesigning Humans
Robert Song, Human Genetics

Human Germline Gene Therapy: Scientific, Moral and Political Issues
by David B. Resnik, Holly B. Steinkraus, and Pamela J. Langer
(Austin,TX: R. G. Landes Co., 1999), 189pp.

[1] This book is one in a series of works published by the R. G. Landes Company in the area of bioscience, with the purpose of assisting researchers and clinicians to address the changing scientific scene and the ethical and policy issues being raised. It is a collaborative effort by two scientists from the University of Wyoming (Steinkraus and Langer) and one from East Carolina University (Resnik). While the final product is the work of all three, the Wyoming professors are primarily responsible for describing in the first four chapters the current state of medical genetics and technologies pertaining to human germline gene therapy (HGLGT), while Professor Resnik, a recognized voice in bioethics, is the principal author of chapters 5-10 in which the moral and political issues raised by HGLGT are addressed. The scientific material is treated in a helpful, straightforward manner that most readers can profit from, whatever their scientific background. A 12-page glossary of terms is particularly useful.

[2] The authors are concerned that we discuss the implications of HGLGT now, while scientific and technological obstacles still exist. Genetic engineering is quickly becoming a scientific fact and comprehensive discussion is urgently needed while we still have some time. They want to provide a sober assessment of the possible benefits and risks offered by HGLGT, advocating what they regard as a middle, “prudential” path between the opposite extremes of an undue pessimism that would place a moratorium on HGLGT research, and undue optimism that lacks the proper caution and circumspection concerning the prospects of HGLGT. Thus they are not opposed in principle to germline interventions, but are committed to a careful evaluation of the benefits and risks. They are not advocates in the fashion of Gregory Stock (see below), but neither are they as critical of the whole prospect of genetic engineering as some of the authors we discussed in the September column (Kass and Hubbard, for example).

[3] The authors emphasize that germline therapy in most cases would not be the preferred course of action in dealing with single-gene defects, which are the most common class of genetic disorder, for they can be handled by other, simpler methods such as embryo selection techniques (as practiced in IVF procedures). Were HGLGT ever sanctioned by society, the authors believe it would be appropriately used only if it were the sole way in which to prevent a genetic disorder in a future child. On the other hand, as a one-time procedure HGLGT would be a more efficient means of genetic correction than somatic gene therapy (SGT), which may have to be repeated to sustain the therapeutic effect. But the potentially widespread effects of a HGLGT error make it far more serious than with SGT, limited as it is to an individual person. The ideal would be to develop a procedure that would be 100% efficient and accurate, but this can hardly be done without clinical trials that are needed to achieve the certainty we want. The question is whether the inherent uncertainties in HGLGT allow for such destructive possibilities (“…the cure may be much worse than the disease”), that wisdom and common sense would militate against utilizing it. This would run diametrically opposite to the spirit of science, but does HGLGT pose a substantively different prospect that requires establishing a limit to scientific investigation? The authors are not willing to advocate that radical a step, but see it as a possible eventuality.

[4] On the issue of therapy versus enhancement, the difficulty in distinguishing them rests in the ambiguity around the concept of disease. The authors believe that a biological concept of disease “can provide an objective basis for many genetically-based maladies,” which in turn leaves a reasonably clear distinction between therapeutic interventions and those that are designed for enhancement. At the same time they recognize that social as well as biological factors can play a role in society’s perception of disease (or of a serious medical problem), making the boundary between health and disease less clear. Thus the therapy/enhancement distinction in genetics “leaves room for many borderline cases,” diminishing its value as a practical standard. They conclude that the choices we face are sufficiently complex that it’s difficult to maintain the formula, therapy=good and enhancement=bad. A more pertinent course is “to go beyond this distinction and reflect on deeper moral and political concerns, such as harms vs. benefits, justice, human rights, and human nature.” (89)

[5] The authors are sensitive to the dangers of “genetic determinism,” or the assumption that genes causally determine human phenotypes (the appearance of the individual organism), acknowledging that “a complex interplay between genes and the environment” is involved in the vast majority of personal traits or in one’s vulnerability to particular diseases. They would avoid “genocentrism,” which they label as a prejudice that wrongly emphasizes genetic explanations over environmental ones. They recognize that our culture is presently infatuated with genetics: “We ignore mountains (the environment) in order to focus on molehills (genes).” (90) We need to challenge the gene as a “cultural icon.”

[6] In discussing social policies the authors address the topic of rights, in which a paramount issue would be the rights of parents to “promote and protect the best interests of their children.” This would likely be seen as justifying HGLGT, whether for therapy or enhancement purposes. This kind of argument would include a right to embryo screening and selection as well, all on the grounds of promoting the genetic health of one’s offspring. “It’s quite conceivable that parents who produce children with preventable genetic diseases could even be regarded as irresponsible or neglectful if there are some ways of preventing these diseases, such as embryo selection, selective abortion, or HGLGT.” (117) Given the consequentialist method of the authors, they conclude that there are two reasons for restricting or violating parental rights in this case: To prevent harm to others or in order to respect the rights of others, with the “others” here being the children who would be the “products” of HGLGT, as well as future generations. Obviously the immediacy of parental rights would lend much more weight to their argument and likely guarantee their success, unless the “harm” to others is recognized as significant and is capable of being proven beyond any reasonable doubt. My own belief is that the language of “rights” in this context would likely trump any reservations about HGLGT that were not based on serious negative consequences that were clearly discernible.

[7] Related to the above paragraph is the question, “Do we have obligations to future generations?” The authors say yes, but also argue that such obligations are not as “strong” as our obligations to zygotes, embryos, fetuses, or members of the current generation. There’s a contingent character to unborn future generations, given the time factor: The direct effects of our actions may be changed over time, and possible changes in the life-situations of future generations make it difficult to know how best to promote or protect their interests. The principle of non-maleficence is applicable here, but not in a way that prevents the taking of every risk; we should maintain faith in the ability of future generations “to compensate for many of the problems created by scientific and technological advances.”

[8] In a chapter addressing justice issues, the authors consider possible scenarios that could enfold with the use of HGLGT as a means of enhancing the performance and achievement of human beings (they acknowledge the hypothetical nature of this discussion, but are aware that what appears to be science fiction today is often reality tomorrow). A conceivable danger would be to reduce equality of opportunity, giving a select few an unfair advantage over others. The authors pose three options that might be taken by society: 1) Forbid genetic enhancement; 2) Allow genetic enhancement within a genetically “normal” range; 3) Allow genetic enhancement with no restrictions. The first option is rejected as unenforceable, but also wasteful in view of the fact that “genetic enhancements could yield social benefits” through heightened talents and abilities. Option three would also be unacceptable because it would generate extreme inequalities that would be injurious to the common good. Option two would be preferable, though establishing a standard for normalcy would be a challenge, to say nothing of enforcing the limits on genetic variation. The authors suggest a “Genetic Minimum/Maximum” approach that would “specify a genetically normal range of variations for a variety of genotypes in the human population.” For example, there would be limits on height, strength, longevity, and other traits with a genetic basis, so that diversity within limits would be maintained.

[9] Another chapter treats the issue of human nature and genetic enhancement, a topic highlighted by such writers as Francis Fukuyama and Leon Kass. “Is altering our humanness inherently wrong?” A utilitarian approach would say no and seek to determine whether the benefits outweigh the harms in arriving at an answer in each case. The authors aver that a rights-based view would also respond in the negative because it lifts up the obligation to promote the welfare and dignity of each individual, and genetic interventions in themselves would not deny that obligation. The crucial issue would be how we use genetic engineering. The authors conclude that a natural law view, whether based on secular grounds (rooted in human biology) or religious grounds (rooted in God’s will or command), is the one view that would respond positively to the question. Our humanness, according to the natural law view, is naturally good and it is against nature and morality to change it.

[10] The authors reject the natural law view, noting that many medical procedures are “unnatural,” whether removing an appendix or delivering a baby through Cesarean section, or sterilizing someone or performing sex change surgery. They maintain the real issue is whether human dignity is violated, not whether “artificial” or “unnatural” changes are made in and of themselves. “If patients with artificial hearts can still have self-respect and moral worth, then why can’t genetically engineered children still have self-respect and moral worth? Once again, we recognize that some interventions might be so unnatural [exceeding the limits of the Genetic Maximum/Minimum standard discussed above] that they would violate human dignity, but the ‘artificiality’ of human life does not violate human dignity, per se.” (152) The point is made that theological arguments in themselves are not sufficient – moral and political concepts have to be utilized in order to “make sense” of divine commands or God’s will.

[11] Does the above argument address the point being raised by writers such as Kass and Fukuyama, who emphasize the givenness and inviolate character of human nature? Each of the medical procedures mentioned in the preceding paragraph, given an appropriate context and acceptable motive, can be seen as a correction of a medical defect, or an attempt to protect someone, or to effect a change necessary to achieving full health or personal integrity. In contrast, the argument based on human nature is raising the question whether in some cases the effort to remove a perceived limitation, likely defined as a defect or problem, constitutes the refusal to accept or acknowledge human limitations where in fact they ought to be accepted. What would those cases be? They may represent an all-too-human desire to secure an advantage over others in a competitive environment, such as the desire to increase the I.Q. of one’s child, or the height of one’s son. The point of the argument is clarified if we relate it to the concept of hubris, which assumes the reality of human limitations that we ought not resist. It is not simply the quest for something more, or better, or more fulfilling, which has characterized the human story from its beginning, but rather an effort to gain control of our destiny in ways that threaten our ultimate well-being. That threat may not be all that apparent with the individual case, but it becomes so in the aggregate.

[12] The authors do acknowledge the legitimacy of this concern in recognizing that there must be some kind of limits or boundaries in genetic enhancement. As noted above, they suggest the concept of “dignity” as a means of determining limits, but what this means and what implications it bears would have to be spelled out. While rejecting the notion of “perfecting” the race, they are comfortable with the language of “improvement,” “progress,” and “excellence,” all of which can be set in motion through genetic interventions. While the authors acknowledge the need of humility and realism, cautioning against “Faustian delusions of grandeur,” they nonetheless are significantly more open to utilizing genetic engineering to improve and enhance the human condition than are those who would lift up the concept of human nature as a standard for guidance. They adopt a “let’s wait and see” attitude, recognizing that the values of society may change and attitudes may become more receptive as the level of safety and lack of risk increases. This is a view that coincides with their consequentialist approach (benefits vs. risks) to moral reasoning; it remains an open question whether this approach is adequate to the kinds of moral issues that germline therapy is likely to bring.

The Lives to Come: The Genetic Revolution and Human Possibilities
by Philip Kitcher (New York: Simon & Schuster [A Touchstone Book], 1997), 397 pp.

[13] This book by Philip Kitcher, a philosophy professor at the University of California at San Diego, is not only quite helpful in providing a comprehensive survey of the many implications of the genetic revolution, but is uncommonly thoughtful as well. While anticipating positive outcomes from genetic interventions, Kitcher is quite frank in discussing serious limitations in the current status of gene therapy. One example of this is his treatment of genetic testing, which to be meaningful requires a background of extensive statistical information which is often missing. The result is the creation of illusions based on “the convincing precision of meaningless figures.” Even when we can get a solid handle on our genetic condition, it may be of little value because no cure is available. We need independent bodies to clarify and assess the medical uses to which tests can be put.

[14] The idea of gene replacement therapy also faces many risks that are not adequately addressed in the usual distinction between somatic therapy (good risk) and germline therapy (bad risk). Like the authors of the book discussed above, Kitcher looks for alternatives to directly tinkering with genes. The common language of gene “replacement” is a misnomer, whether through injecting DNA into cells removed from the patient and reinserting them, or inserting the DNA into a carrier or vector (usually a virus that has been rendered harmless) and then inoculating the patient. Neither method works reliably, but Kitcher acknowledges that some progress has been made in ameliorating severe cases. (A caveat here: The pace of change in genetic technology is likely to raise questions about any claim concerning what it has or has not achieved over the last several years. It complicates the reporting of these developments!)

[15] Kitcher is not averse to the notion of enhancement through genetic interventions, arguing that some would seem “eminently justified.” But his discussion also illustrates the ambiguous nature of the therapy/enhancement distinction. He cites the enhancement of the human immune system that would reduce vulnerability to infectious diseases, or the prevention of decay of hearing in older age, as worthy improvements. At the same time, he shares the reservations of those who argue against enhancement when he questions any widespread practice of improving on nature (for example, by increasing our cognitive powers) because it “could easily have unhappy consequences.” His primary concern is that enhancement could result in social conflict by creating two classes, the privileged and the others. He also notes “the shadow of eugenics,” where we get into the “immoral” enterprise of “choosing people.” Yet these concerns do not prevent Kitcher from asserting, “Taking steps where we can refashion ourselves and our descendants is not always morally wrong.” (125)

[16] A particular merit of this book is its wide-ranging and thoughtful consideration of issues arising at the intersections of genetics and public policy, including issues of health care, employment, the use of DNA in forensic analysis, and eugenics. The chapter devoted to implications of one’s genetic condition for employers and insurers is marked by an admirable concern for fairness and inclusiveness. Informed by the work of John Rawls, Kitcher is critical of our present health care system because of its inability to avoid discrimination. Though insurance companies declare no one uninsurable, they do in fact exclude people at risk because of their genetic condition by demanding sky-high premiums. A just society, maintains Kitcher, would make one’s genetic condition irrelevant to the costs of coverage. “The pertinent variable is not the degree of risk, but the ability to pay.” The only real solution is universal health care funded through progressive taxation.

[17] While sensitive to the evils of bias and prejudice in the history of eugenics, Kitcher does not think this checkered history invalidates all eugenic activity. He proposes an enlightened eugenics policy based on education rather than coercion, sensitive to the intrusions of ideology and prejudice, and where eugenic activities such as prenatal testing would be made available to the whole population rather than to a privileged few. He wants a society both willing to control the birth of profoundly disabled infants (as examples he cites Hurler syndrome and Sanfilippo syndrome), and at the same time is committed to the care and encouragement of those afflicted with disabilities. He calls this “utopian eugenics,” recognizing the challenge that it would pose for society but lifting it up as a worthy goal. Finding sufficient consensus on the nature of eugenics education would not be easy; the task would be to settle on those fetal characteristics that would lead responsible people to terminate a pregnancy. Three things are clearly needed: accurate information, open access, and freedom of choice. Genetic testing of course assumes the option of abortion, which for Kitcher is always morally serious but is also morally defensible within certain contexts.

[18] One of the questions we face in pursuing gene therapy is the fact that we are not yet clear about the process by which one’s genotype emerges in the particular traits that distinguish a person, i.e., one’s phenotype. In regard to some genetic diseases we can see an obvious connection of gene and phenotype, but in much of “genetalk,” in which we hear about genes “for” particular diseases or personal traits, the complexity of this subject too often is not recognized or acknowledged. Examples would be discussion of genes “for” homosexuality, or aggression, or low IQ. Kitcher recommends postponing such discussion until we get a better understanding of the question, in what sense are there genes “for” anything? We need to make more explicit the dependency of genes on other genes and on the environment. We also need to ask, in what range of “standard environments” (for example, those common to a society’s practices of rearing children) does the trait invariably occur in those who bear the gene. There can be genes “for” behavioral patterns that are brought about in complicated ways. (247) One unfortunate implication of casual genetalk is the idea that one’s behavior is determined – that an “obesity gene,” for example, leaves one helpless to do anything about it.

[19] Philosopher Kitcher naturally takes up the issue of reductionist, molecular explanations, a prominent theme in a number of works we’ve discussed in this column. He draws on Daniel Dennett (Brainstorms), who argues that to explain a psychological process in biological terms is not necessarily to explain it away. Molecular accounts can leave in place “the psychological explanations that give value to our experiences.” But the question can be raised whether we are truly free if our mental life is caused by molecular processes. Here the eighteenth century philosopher David Hume is helpful, who makes the point that “what matters to human freedom is not whether an action is caused, but how it is caused, and that, to a first approximation, our actions are free when they are caused by our desires.” Kitcher concludes that the important thing is that “the intricate neural firings moving us to act constitute wishes and intentions that accord with our self-conceptions.” (283) Given the ambiguities (the mystery?) inherent to relating biological life to psychological and mental experience, my own belief is that any attempt to reduce the latter to the former reflects ideological thinking, aptly expressed in the term, scientism.

[20] In his argument on behalf of utopian eugenics, Kitcher makes a case for what he regards as an enlightened, carefully circumscribed practice of eugenics, where abortion is a legitimate means of avoiding future human suffering, and where quality of life for the individual is clearly defined and respected. He argues that “a precondition for a life of even modest quality is an ability to form a sense of self and to formulate, for oneself, what matters. Instead of focusing on pleasure or the absence of pain, I take the core of a minimally valuable life to be a person’s chosen ideal of that life’s direction.” (287) As examples of diseases that would destroy the possibility of a sense of self, Kitcher cites Tay-Sachs, Lesch-Nyhan, neurofibromatosis, and severe examples of Fragile X syndrome. In difficult cases where abortion becomes debatable, he questions the principle, “When in doubt, choose life.” This is more seductive than helpful, given the fact that in early abortion the life that is ended “is not yet sentient – no person is destroyed.” Many parents, confronted with this dilemma, “have decided that they must give the fetus a chance at life, and have watched, with regret and remorse, a child eke out in a hospital bed a wretched existence of indefinite duration.” (300)

[21] Kitcher’s book advocates both a more aggressive approach to the use of abortion in cases of severe disability, and public determination “to support and treat with respect those afflicted with the genetic conditions we attempt to predict and to prevent.” (309) This introduces a tension that many would regard as unlikely if not impossible to attain. They would insist that a universal respect for life at all stages of its development is the only way to achieve a humane society. But Kitcher would be justified in replying that sanctity of life as espoused by anti-abortionists, or by those who, at the opposite end of the life-span, insist on heroic efforts to maintain life when devoid of its quality, is often united with a willingness to ignore the plight of those who are caught in brutalizing environments. Respect for life is often a selective matter, revealing ideological perspectives that close one to broader implications. Kitcher’s vision of utopian eugenics excludes human life that is not yet sentient and which holds no promise of the capacity “to form a sense of self and to formulate, for oneself, what matters.” He believes that not only does biomedical technology make possible a policy of this kind, but that, “quite reasonably, many people are prepared to support its development and to pay for its merciful applications.” (309)

[22] This book poses a stark choice between two opposing views of what constitutes a respectful, responsible approach to genetic decisions. Not only does Kitcher’s proposal assume that we will be able to make life-and-death decisions for fetal life that are accurate, responsible, and merciful; he also argues that we are leaving the age of genetic innocence and must learn to make the kinds of discriminating judgments that will best serve the genetic health and future of humanity. It’s a matter of handling responsibly the increased sovereignty over life and death that biotechnology bestows, at both ends of the life span. Despite the risks, Kitcher’s vision expresses confidence in our ability to exercise that sovereignty in ways that will prove to be morally responsible.

Redesigning Humans: Choosing Our Genes, Changing Our Future
by Gregory Stock (Boston: Houghton Mifflin [Mariner books], 2003), 277pp.

[23] In our September column we discussed a work co-edited by Gregory Stock, and we turn now to his major opus on the prospects of engineering the human germline. Stock is one of the more prominent advocates for a “full-steam ahead” approach to germline engineering; it may still be “a decade or two away,” but he insists that methods are already in place to choose specific genes in an embryo for the purpose of preventing disease, and that “sophisticated methods for making broader choices are arriving every year.” A prominent characteristic in the thinking of people like Stock is a supreme confidence in the ability of genetic technology to attain the goal of a more perfect humanity.

[24] Stock sees the course of genetic progress as totally transformative. There may well come a time when humans as we know them will no longer exist, because our capacity to speed up the spreading of successful genes will enable us to embark on a program of human self-design. “Progressive self-transformation could change our descendants into something sufficiently different from our present selves to not be human in the sense we use the term….Homo sapiens would spawn its own successors by fast-forwarding its evolution.” (4)

[25] This genetic progress will also be inexorable. Stock points to the many indications that our society is committed to self-enhancement, whether motivated by competition (the use of steroids in professional sports), vanity (cosmetic surgery), or the simple desire to find an edge for oneself and one’s children in the universal quest “for money, status, and mates.” He sees no qualitative distinction between genetic enhancement and other efforts at self-improvement, and is sure that most people will not hesitate to take advantage of every available means of getting ahead. Improving ourselves is similar to improving the environment; we are fortunate that our technological powers “are now potent and precise enough for us to turn them on ourselves.” (13)

[26] Given Stock’s emphasis, it’s understandable that he stresses two assumptions: “First, genes matter and are responsible for important aspects of who we are. Second, many of the influences our genes exert are straightforward enough to identify and select or rework.” (42) He is confident that with developments in bio-informatics and pharmacogenetics (the science of tailoring drugs to the genetic make-up of individuals), we will be able to exploit the full benefits made available to us through the Human Genome Project. The thrust of his argument also leads understandably to more control of human reproduction: “With a little marketing by IVF clinics, traditional reproduction may begin to seem antiquated, if not downright irresponsible. One day, people may view sex as essentially recreational, and conception as something best done in the laboratory.” (55)

[27] A striking feature of this book is its implicit confidence in the benign effects of the free market in determining the direction of new technologies. Stock argues that capitalism offers the needed safeguard against questionable reproductive technologies because it will deny a market for them. This, in turn, assumes that any widespread want or desire expressed by the public is thereby justifiable. This would presumably justify extensive laboratory reproduction according to Stock, since he anticipates that development. It would also justify efforts to retard the aging process, which Stock assumes will be a major concern in coming generations. Indeed, he argues that society may begin to see aging “not simply as a disease, but as the disease. It affects everyone, it cripples, it kills, it is brutal, and suddenly it would be seen as potentially treatable.” (85)

[28] An oft-recurring theme in the works I’ve reviewed is the questionable inflation of the role of genes in shaping our behavior. Stock echoes this warning, and yet his book certainly contributes to the problem. The optimism that marks this work is illustrated in Stock’s belief that the new data bases that will become available insure our ability to eventually make genetic correlations with the most complex personality traits. He offers the possibility of securing for our children “a touch of Einstein’s genius” or some of Michael Jordan’s physical prowess through what he calls germinal choice technology. While Stock acknowledges the debatable character of such developments, he nonetheless assumes that they are inevitable because we will be able to perform them and people will want to take advantage of them. “Pure and simple, we are poised to make conscious, highly specific choices about the genetic constitutions of our children and to inject our preferences into the next generation using methods far beyond those previously available.” (110)

[29] Stock does not ignore the ethical and social issues raised by his vision of redesigning humans, but, characteristically, he finds no substantive grounds for holding back. On whether genetic enhancements might create an elite class, he suggests that genetic services that might cost millions of dollars in 2030 will be both improved and far less expensive in 2060. On the other hand, without questioning whether the analogy holds when the service being purchased is genetic enhancement, he sees no reason to begrudge the rich in their ability to pay for services of many kinds that are not available to most. Stock’s best-case scenario would be a combining of science and policy “to make germline enhancement widely available, relatively commonplace, and largely under the control of individual parents.” (191) As to whether parental expectations of a “designer” child would not be oppressive, he argues that many parents already bring certain expectations concerning their children that are often not met.

[30] Stock likens the coming conflict over genetic enhancement to the current abortion wars, but anticipates a societal struggle that will be still more traumatic. Some practices now contested will gradually gain acceptance, while others – like gender selection, for example – may never achieve consensus. In any event, Stock opposes the passing of laws to control our choices. The best approach is a “hands-off ” policy, giving full autonomy to parents even if aggravating decisions are made. I’m impressed with the tension (and the irony) involved in two opposing motifs in Stock’s program. On the one hand he stresses parental autonomy in making genetic decisions, but on the other hand he believes that societal pressure will exercise considerable control over those decisions. He sees cultural forces emphasizing perfection, efficiency, and conformity as goals of germinal choice (welcome, Brave New World!).

[31] This is an engaging book in many ways, but also a very sobering book. Its unquestioning confidence in the ability of science and technology to create a new world and literally a new humanity is typically American. It also exhibits a supreme confidence in the benign working of the marketplace in facilitating the best and most worthy genetic decisions. I question whether this confidence, or faith, is warranted, and for several reasons. 1) It exhibits considerable naivete in its assessment of the human condition, failing to recognize the self-destructive dimensions inherent to the exercise of human self-interest. What we want and yearn for is not thereby warranted as an unalloyed good, a fact that Stock seems unwilling or unable to recognize. 2) A related reservation concerns Stock’s confidence in the human capacity to “design” its future, choosing the direction of human evolution by initiating changes that he believes may well leave current humanity as a relic of the past. Stock’s language here smacks of hubris in its suggestion that we are destined to create a new and different humanity. In keeping our feet on the ground, it is necessary to ask in what sense we are creators and what our limitations are. Can the prospect of making humans the object of biotechnology really be greeted without an acute sensitivity to the possible harms that can result? This book can serve as a kind of negative object lesson on the nature of the challenges we face in trying to develop sane boundaries for a technology that threatens to run amok.

Human Genetics: Fabricating the Future
By Robert Song (Cleveland: Pilgrim Press, 2002), 143pp.

[32] With this book by Robert Song, who serves on the faculty in Christian ethics at the University of Durham, England, we address for the first time a work that takes an explicitly Christian approach to genetic technology. It is a thoughtful book, with measured judgments and rich insights rooted in theological convictions. Song wants to look at some fundamental causal factors – “the attitudes, beliefs, and existential commitments, as well as the medical, scientific and commercial factors” – that have shaped developments in recent genetic technology. In doing this, he recommends a different vision of society and the human good based on the Christian story, which might serve as an alternative model in addressing the pressures of technology. He hopes the church might embody this alternative vision.

[33] In opening remarks on a Christian approach to health and medicine, Song links sickness and suffering to the deeper spiritual predicament of sin, while being careful not to equate sickness with sin itself. Sickness, evil, and death are all “results of the fall,” while works of healing, as seen in Jesus’ own ministry, are symbolic of salvation and “embody some of its reality.” One must be careful here in making connections between physical healing and a Christian understanding of salvation, lest one conclude that the dramatic healing powers of genetic therapy are to be understood as divine acts of redemption. Song avoids this mistake (not all theologians have) by distinguishing between the healing of disease and one’s becoming whole through repentance and forgiveness.

[34] It follows for the Christian that while care and healing are imperatives of faith, there are dubious consequences to the total absence of disease and pain if they become the ultimate goals of medicine. Saint Paul’s reflections on his own “thorn in the flesh” (2 Cor. 12:7-10) remind us that suffering is not meaningless, but can produce endurance and hope. Thus there is both healing and a willingness to accept suffering and to look for meaning in it that characterizes a Christian view. It is a twofold perspective that stands in stark contrast to the Western idolization of health, which makes the eradication of serious illness the ultimate justification of science and medicine. In this view, disease or disability becomes “an abnormal deviation” rather than a reminder of our true situation. As in the case of Gregory Stock (see above), mortality itself, or the aging process, becomes the absolute disease. For Christians, disease of course is not a good, but “there are good things which may arise in and from it.” It can result in the capacity to accept the inevitable and to be patient in suffering.

[35] Song is sensitive to the consumerist attitude that extensive genetic screening can generate. It’s a form of quality control of children and “a mind-set of commodification” that turns them into manufactured objects. These concerns lead him to a decisive repudiation of reproductive cloning: It’s one thing to use technology to assist the role of sex in procreation…and another using technology to replace the role of sex in procreation…. (30) He is also dubious about therapeutic cloning, preferring that we pursue research with adult stem cells lest our success in therapeutic cloning pave the way toward reproductive cloning. An underlying issue here is the status of the embryo: When does personhood begin? Song sees this as a moral rather than scientific question, though it must be scientifically informed. After considering and rejecting various arguments based on the development of the fetus, his conservative instincts lead him to conclude that from conception on “one should not dare to risk killing what for all one knows is a person.”

[36] I would agree with Song that the embryo/personhood argument is a moral rather than scientific issue, but his conclusion seems to assume that there is some unknown (scientific?) reason that could settle the matter apart from our moral reasoning. To decide that personhood begins at conception because it’s the “safest” alternative is to make a moral judgment that in effect absolutizes the value of non-sentient, embryonic life regardless of other moral considerations that can arise. Given the fact that the law rests on morality, just one complication that arises from this particular moral judgment is the fact that bestowing full legal rights on a conceptus threatens to produce a legal quagmire. Respect for life as an ethical challenge does not receive its ultimate test at the level of embryology, but at the much more difficult level of human interrelationships.

[37] In regard to the abortion issue, Song regards it at any stage as “the killing of an unborn child.” He is particularly sensitive to the cultural currents that can justify or make more acceptable various reasons for terminating a pregnancy, certainly a legitimate concern. Given the absence of meaningful therapy for genetic diseases, abortion will be increasingly used as a means of preventing children with disabilities from being born. In the long run, is the most life-affirming policy one that opposes any termination of a disabled fetus, or one that responds in a more contextual way according to assessments of the burdens involved for all concerned? The latter approach is more vulnerable to “slippery slope” considerations, but it will also be more responsible in addressing the nuances of each individual case. I believe (where Song does not) that the bias on behalf of life that characterizes Christian ethics is best expressed in a contextual rather than absolutistic frame of mind.

[38] Song’s theological perspective is particularly astute in regard to genetic engineering, where he makes a connection with Gnosticism’s understanding of redemption as being saved from the body. He sees this attitude in the growing desire to change the body and ultimately to escape from all bodily limitations. In contrast to this new Gnosticism, Christianity does not see finitude as an obstacle to human fulfillment or as limitations that we should seek to transcend. This means that a Christian view necessitates some kind of distinction between the genuinely therapeutic action and those “which, in a more Gnostic spirit, amount to efforts to transcend the created order.” (68) It is a form of salvation through genetic/biological interventions, which, among other things, gives credibility to the idea that all suffering is unnecessary. This in turn “prevents us from facing up to the reality of our human condition.” The Christian hope in the resurrection speaks directly to this situation, setting transcendence in a new key. It is not escape from the body, but the hope of a transformed body beyond death.

[39] With the distinction between therapy and enhancement a critical aspect of a Christian approach to genetic interventions, Song gives attention to a number of attempts to establish an objective basis for the distinction (notably the writings of Norman Daniel and Eric Juengst). Once again in view of the resurrection, he suggests an alternative approach that does not ask, “Does this intervention count as treatment or enhancement?” but rather, “Does this symbolize a recognition of human limits or an attempt to transcend them?” (77) The focus is on motivation and cultural commitments more than the specific kind of intervention. My own sense is that Song provides an instructive, larger context for considering the issue, but not a substitute for the necessary task of delineating concrete, medical reasons for choosing or not choosing specific procedures.

[40] Song devotes a chapter to justice and human community in which he discusses ethical issues raised by behavioral genetics, the use of genetic information by insurers, gene patenting, and some broader problems in the area of global justice and genetics. He is appropriately cautious about the “gene for” phenomenon, as well as any attempt to relate specific genes to one’s phenotype (the observable constitution of a person). He also challenges what he sees as a prevailing sense of genetic fatalism or biological determinism, which is not warranted by the fact that “there are biological predispositions to particular behaviors.” The principal justice issue in thinking about genetics and society is the possible use of inequalities of inheritance to reinforce the superiority of some over others. In regard to health insurance, Song argues the superiority of a national health service based on a model of solidarity over private insurance companies. Government must be kept responsible for ensuring there is no genetically uninsurable underclass.

[41] Song is critical of current bioethics, seeing the discipline as failing to maintain a critical distance from the prevailing currents of our culture which we have discussed – the desire to eliminate suffering and to expand human choice (drawing on Gerald McKenny’s book, To Relieve the Human Condition, he describes this cultural context as the Baconian Project, rooted in the writings of Francis Bacon). These goals are certainly worthy in themselves, which makes it all the more difficult to see where they become distorted in a secular world. To carry out a critical role here is a particular challenge to the church, which must lift up a counter-narrative as a living alternative, “a different story that shows the contingency of the dominant narrative.” (123) In making this point, Song fulfills an important task of Christian bioethics in this work, which I recommend as a readable book for clergy and laity alike.

Paul T. Jersild

The Rev. Dr. Paul T. Jersild is Emeritus Professor of Theology and Ethics at Lutheran Theological Southern Seminary, Columbia, South Carolina