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.