2. Distinctions without a Difference
3. Ethical Starting Points for A
A. Rule Utilitarianism
B. Privacy, Self-Determination
and Bodily Autonomy
C. Freedom from Biological
D. Justice and a Better
E. A Critical Defense
4. Arguments Against Genetic
This paper sets out to defend human genetic
engineering with a new bioethical approach,
post-humanism, combined with a radical
democratic political framework. Arguments for the
restriction of human genetic engineering, and
specifically germ-line enhancement, are reviewed.
Arguments are divided into those which are fundamental
matters of faith, or "bio-Luddite" arguments,
and those which can be addressed through public policy,
or "gene-angst" arguments.
The four bio-Luddite concerns addressed are: Medicine
Makes People Sick; There are Sacred Limits of the Natural
Order; Technologies Always Serve Ruling Interests; The
Genome is Too Complicated to Engineer. I argue that these
are matters of faith that one either accepts or rejects,
and that I reject.
The non-fundamentalist or pragmatic concerns I discuss
are: Fascist Applications; The Value of Genetic
Diversity; The Geneticization of Life; Genetic
Discrimination and Confidentiality; Systematically Bad
Decisions by Parents; Discrimination Against the
Disabled; Unequal Access; The Decline of Social
Solidarity. I conclude that all these concerns can be
adequately addressed through a proactive regulative
framework administered by a liberal democratic state.
Therefore, even germ-line genetic enhancement should
eventually made available since the potential benefits
greatly outweigh the potential risks.
Nine years ago Jeremy
Rifkin convinced me that genetic technology would
determine the shape of the future while I rode a bus
through the small, crooked, immaculate and beautiful
streets of Kyoto. I was reading his Algeny
[Rifkin, 1983], an alarmist attack on the coming of the
gene age, alongside What Sort of People Should There
Be? [Glover, 1984], a moderate defense of genetic
engineering by the Oxford don Jonathan Glover. In a
sense, in the nine years since, I have recoiled from the
radical Rifkin to embrace the reformist Glover.
In earlier decades Rifkin had been an SDS activist and
a founding member of the socialist New American Movement.
Sometime in the early 80s, Rifkin saw the distant
headlight of gene-technology and began to sound the
alarm. Since then Rifkin and his Foundation on Economic
Trends have led the fight against the release of
genetically engineered organisms and the funding of
genetics research, as well as other "trends"
that Rifkin is worried about, such as the meat industry
[Rifkin, 1992], the legal establishment of surrogate
motherhood, and the speeding up of experienced time in
the computer age [Rifkin, 1987].
While extreme, Rifkin is a bellwether of Luddite
tendencies in bioethics and the political Left, two of
the movements within which I construct my worldview.
Among bioethicists the anti-technological agenda has
focused on abuses and social dangers in medical research
and practice, and our alleged need to accept death and
technological limits. The post-60s, environmentalist Left
focuses on the ways that technology serves patriarchy,
racism, imperialism, corporate profits, structural
unemployment, the authoritarian state, and domination by
scientific discourse. The response of bioethicists [Lappé, 1972, 1987; Kass, 1972, 1973, 1979; Ramsey,
1970. 1972, 1978; Duster, 1990; Council for Responsible
Genetics on Human Germ-Line Manipulation, 1992] and the
Left [Keller, 1991; Heins, 1991; Morales, 1991; Klein,
1991; Miringoff, 1991; and Hubbard and Wald, 1993a,
1993b] to genetic engineering has been particularly
fevered, driven by accusations of eugenics
and the defilement of sacred boundaries.
Since that bus ride in Kyoto my initial horrified
agreement with Rifkin has shifted to determined agreement
with Glover, that we can control genetic technology and
make it a boon rather than a bane. Instead of a Brave
New World, I see genetic engineering offering a
grand, albeit somewhat unpredictable, future. While many
of the concerns of ethicists and the Left about this
technology are well-founded, I now believe they are
answerable. While I still acknowledge the need for
democratic control and social limits, I am now convinced
that banning genetic engineering would be a profound
Those who set aside angst about changing human nature,
and embrace the possibility of rapid diversification of
types of life, are establishing a new moral and political
philosophy for the 21st century, a system some refer to
The term "post-humanism" was coined by
cyberpunk theorist Bruce Sterling in his 1985 novel Schismatrix,
and popularized by a loose network of anarchocapitalist
technology enthusiasts who refer to themselves as
"extropians" [More, 1990, 1992, 1994]. On the
Left, the principal touchpoint for post-humanism has been
Donna Haraway, starting with her delphic 1985 "Manifesto
Like all philosophical systems, post-humanism
incorporates prior philosophic and political systems but
recasts them around new definitions of personhood,
citizenship, and the limits of social solidarity and
human knowledge. Like Glover, post-humanists view the
coming of genetic technology the way most Americans now
view organ transplants or chemotherapy; there are many
practical questions about how the technologies get
developed and tested, who needs them, and how we pay for
them, but there is no question that they should be
Unfortunately most post-humanists are unalloyed
libertarians and anarchists, and offer no answers to
concerns about the way that social inequality will shape,
and beshaped by, genetic technology. In this essay I will
be trying to imagine what our current liberal democratic
societies could be like if we allowed a post-humanist
flowering of genetic technology, and how many of the
alleged problems of genetic engineering can be addressed
through radicalizing both democracy and liberty, rather
than by erasing the State or imposing Luddite bans.
2. Distinctions without a
Many writers on these technologies draw distinctions
between "negative" and "positive"
genetic modification, and the modification of the somatic
versus germ-line cells [Glover, 1984; Krimsky, 1990;
Moseley, 1991; Elias and Annas, 1992; UNESCO
International Bioethics Committee, 1995]. Negative
genetic modification has been defined as the correction
of a genetic disease, while positive modification has
been defined as the attempt to enhance human ability
beyond its normal limits. The somatic-germ-line
distinction has been made to address the alleged ethical
difference in modifying only one's own body, versus
modifying one's progeny as well.
Both distinctions have been made by those who wanted
to draw a line to demarcate the ethical boundaries of
genetic research. The distinctions are quite fuzzy,
however [Krimsky, 1990; Bonnicksen, 1994A]. Take for
instance Culver and Gert's effort to define
"malady" to distinguish when a genetic therapy
is or isn't "enhancement":
A person has a malady if and only if he has a
condition, other than his rational beliefs and desires,
such that he is suffering, or at increased risk of
suffering, an evil (death, pain, disability, loss of
freedom or opportunity or loss of pleasure) in the
absence of distinct sustaining cause. [Culver and Gert,
Doesn't any cause of illness, suffering and death, or
inadequacy in the face of one's goals, fit this criteria?
Take for instance a potential future genetic therapy that
turned off a hypothetical aging switch, doubling the
human life span; is this therapy for the diseases which
result from the activation of the aging switch, such as
Alzheimer's or cancer, or an unconscionable intervention
into the natural span of life?
As to the modification of one's own genes versus
future progeny, the argument is made that current
generations would be violating the self-determination of
future generations by doing so. The first response is
that our choice of breeding partners already
"determines" the biology of future generations.
Take the case of a couple who both carry a gene for
latent inheritable mental illness. The only difference
between their choosing not to breed with one another, and
choosing to have germ-line therapy on themselves or their
child to correct the illness, is that the latter choice
is a far happier one.
Technology itself makes the distinction unhelpful,
since some viral vectors will introduce DNA into both
somatic and germ-line cells, and some disorders will
require intervention at the blastula stage or before
conception in order to be effectively treated. Genetic
technology will make it possible for future generations
to change their genes back if they don't like them. Only
modifications which remove decision-making autonomy from
future generations altogether would truly raise issues of
"self-determination," and I will discuss such
fascist scenarios below.
These distinctions are extremely fuzzy, and do not
represent important ethical boundaries. In this
essay I want to defend genetic therapy and
enhancement, as well as self-modification by competent
adults and our modification of our progeny. Most
international consensus statements have drawn the line at
germ-line therapy, or genetic enhancement, or at least
germ-line enhancement [Bonnicksen, 1994A] although
language about these matters are conspicuously absent in
two recent statements [UNESCO International Bioethics
Committee, 1995; HUGO,
Therefore, the center of the terrain that I want to
defend is germ-line enhancement, the modification of the
genetic code such that the parent passes on the
enhancements to their progeny. The defense of this
practice necessarily addresses the concerns about many
other technologies, such as:
- In-Vitro Fertilization
- Surrogate Mothering
- Extra-uterine Gestation
Screening and Diagnosis
- Genetic Selection, including Sex Selection
- Cloning of Embryos
In a more fundamental sense I am writing in defense of
our control of our bodies, individually and collectively.
I want to build a broad enough defense to cover any
technology offering modification of human abilities,
whether a specific genetic application has been imagined
for that purpose or not.
3. Ethical Starting Points for
A. Rule Utilitarianism
In general I assume the ethical stance of Millsian
rule utilitarianism: acts are ethical which lead to the
greatest good or happiness for the greatest number. Rule
utilitarianism means that, when
confronted with a distasteful case, such as throwing
a Christian to a lion for the amusement of thousands of
Romans, I fall back on general rules of thumb: "In
general, societies that respect individual rights and
liberties will lead to greater happiness for all."
In the case of genetic engineering my broad assertion
is that gene-technologies can, and probably will, give
people longer, healthier lives, with more choices and
greater happiness. In fact, these technologies offer the
possibility that we will be able to experience utilities
greater and more intense than those on our current mental
pallet. Genetic technology will bring advances in
pharmaceuticals and the therapeutic treatment of disease,
ameliorating many illnesses and forms of suffering.
Somewhat further in the future, our sense organs
themselves may be re-engineered to allow us to perceive
greater ranges of light and sound, our bodies
re-engineered to permit us to engage in more strenuous
activities, and our minds re-engineered to permit us to
think more profound and intense thoughts. If utility is
an ethical goal, direct control of our body and mind,
through genetic control, cybernetics, prosthetics, or
whatever, suggests the possibility of unlimited utility,
and thus an immeasurable good.
B. Privacy, Self-Determination
and Bodily Autonomy
But there are other rules to consider, rules which are
the basis of other ethical systems. Most utilitarians,
and many others, accept the general rule that liberal
societies, which allow maximum self-determination, will
maximize social utility. The rule of, or right to,
self-determination also argues that society should have
very good reasons before interfering with competent
adults applying genetic technology to themselves and
their property. Self-determining people should be allowed
the privacy to do what they want to with their bodies,
and the conceptive products of their bodies, except when
they are not competent, or their actions will cause great
harm to others. I will argue that most concerns about
human genetic engineering do not amount to a clear and
present danger to the public safety adequate to
legitimate violating bodily autonomy and personal
liberty. My objection to state intervention in personal
liberty holds especially true for moral appeals to defend
"human nature," "public morality,"
and so on, such as the language of many consensus
statements which argue against genetic technology
alleging defense of "human dignity."
Acknowledging self-determination as an ethical
starting point addresses half of the revulsion to genetic
engineering: the concern that people will be forced to
conform to eugenic policies. I will discuss this fear of
racist and authoritarian regimes at greater length, but
suffice it to say here that individuals should not be
forced to have or abort children, or forced to modify
their own or their children's genetic code. I heartily
endorse the formulation of the Preliminary
Draft of a Universal Declaration on the Human Genome and
Human Rights [UNESCO International Bioethics Committee,
1995] which states that
7. No intervention affecting an individual's
genome may be undertaken, whether for scientific,
therapeutic or diagnostic purposes, ... without
prior, free and informed consent of the person
concerned or, where appropriate, of his or her duly
authorized representatives, guided by the person's
In this essay, I am articulating the genetics policies
that liberal and democratic societies should adopt; I am
opposed to racism and authoritarianism, and any racist or
authoritarian application of genetic technology.
I also view the embryo and fetus as the biological
property of the parents, and exclusively of the mother
when in utero. Again, the rights of the future
child and of society may restrict what we allow parents
to do to their prenatal property. But I would again argue
that the risks to society and to the children themselves
of prenatal genetic manipulation are negligible for the
near future, and regulable as they become apparent.
C. Freedom from Biological
Genetic technology promises freedom and
self-determination at an even more basic level: freedom
from biological necessity. Social domination pales before
our domination by the inevitability of birth, illness,
aging and death, burdens that genetic technology offers
to ameliorate. As for Marx, the
goal of this revolution is to move from the realm of
necessity to the realm of freedom. Just like industrial
automation, genetic technology is a technology with
liberatory possibilities; the difficulties lie not in the
means of production, but in the relations of production,
the social and political context in which the technology
A second, and far less Marxian observation, is that
social domination has some biological determinants.
Patriarchy is, in part, based on women's physical
vulnerability, and their special role in reproduction.
While industrialization, contraception and the liberal
democratic state may have removed the bulk of
patriarchy's weight, genetic technology offers to remove
the rest. Similarly, while racism, ageism, heterosexism,
and so on may be only 10% biological and 90% social
construction, at least the biological factors can be made
a matter of choice by genetic and biological technology.
D. Justice and a Better Society
While the biological factors in most forms of
inequality are probably slight, genetic technology does
promise to create a more equal society in a very basic
way: by eliminating congenital sources of illness and
disability that create the most intractable forms of
inequality in society. We can go to great lengths to give
the ill and disabled full access to society, but their
disabilities place basic limits on how equal their social
participation and power can be. Our ability to ameliorate
these sources of congenital inequality may even impose
obligations on us to do so, at least for those who are
cognitively impaired and incompetent. Admittedly, we will
probably have surmounted most disabilities through
non-genetic technological fixes long before we do so
through genetic therapy. But the general principle is
that genetic technology promises to make it possible to
give all citizens the physical and cognitive abilities
for equal participation, and perhaps even to bring about
a general enhancement of the abilities essential to
E. A Critical Defense
Unlike those libertarians who hold self-determination
as a cardinal principle, I adopt more of a social
democratic stance, and foresee legitimate limits that we
can and should place on these technologies. For instance,
some characteristics of society, such as social
solidarity and general equality, are so important that
they warrant the regulation of these technologies in the
furtherance of these goals. Collective interests should
also be pursued through active means, such as government
subsidies for the research, development and application
of genetic technologies.
Nor am I an unquestioning advocate of technological
progress. Some technologies are so inscribed with harmful
ends that no amount of regulation and social direction
can make them worth the risk [Winner, 1986]. If I were
convinced that genetic technology, like nuclear weapons
technology, had no redeeming qualities and only great
risks, then I would embrace a complete ban.
But the potential benefits of genetic technology far
outweigh the potential risks. In short, I advocate a
position of critical support, a position which reflects
the suspicious optimism that most people around the world
have toward genetic technology.
A 1987 survey of Americans by the U.S. Office of
Technology Assessment found that support for genetic
engineering ranged from 84% approval for genetic
modifications to "Stop children from inheriting a
usually fatal genetic disease," to 44% support for
"positive" genetic modification to
"Improve the intelligence level and physical
characteristics that children would inherit." [OTA,
1987] In a 1993 survey, more than 50% of the respondents
in India and Thailand supported the use of gene therapy
for the purposes of physical, intellectual or moral
enhancement [Macer, 1994]. A 1994 Gallup poll in the UK
reports 20% of people accepting enhancement gene therapy
[Nature, 1994, 371: 193].
4. Arguments Against Genetic
There are at least two kinds of criticisms of genetic
technology, fundamentalist and non-fundamentalist. (See
Mauron and Thevox (1991) for a similar distinction.) The
fundamentalist or "bio-Luddite" concerns, such
as those of Jeremy Rifkin, I reject fundamentally. On the
other hand, I accept the validity of many of the
non-fundamental concerns, but see the problems they
suggest as soluble. Few of these concerns about genetic
technology raise new questions for medical ethics
[Proctor, 1993]. The same questions have been raised by
previous medical research and therapy, and those
challenges have been met without bans on those
Some non-fundamentalist critics believe that,
cumulatively, the risks posed by new genetic technologies
are great enough to warrant postponing genetic research
for some indefinite period of study and preparation. With
these concerns I will argue that, with adequate
technology assessment and anticipatory regulation, there
will be adequate time to regulate genetic technology as
we proceed; none of the risks are sufficiently weighty,
individually or cumulatively, to outweigh the potential
The fundamentalist or bio-Luddite concerns I will
A. Bio-Luddism 1 : Medicine Makes People Sick
B. Bio-Luddism 2 : Sacred Limits of the Natural
C. Bio-Luddism 3 : Technologies Serve Ruling
D. Bio-Luddism 4 : The Genome is Too Complicated
The non-fundamentalist or pragmatic concerns I will
E. Gene Angst 1 : Fascist Applications
F. Gene Angst 2 : The Value of Genetic Diversity
G. Gene Angst 3 : The Geneticization of Life
H. Gene Angst 4 : Genetic Discrimination and
I. Gene Angst 5 : Systematically Bad Decisions by
Parents for Children
J. Gene Angst 6 : Discrimination Against the
K. Gene Angst 7 : Unequal Access, Priority
Setting and the Market
L. Gene Angst 8 : The Decline of Social
A. Bio-Luddism 1 : Medicine
Makes People Sick
One extreme bio-Luddite position was elaborated by Ivan
Illich [Illich, 1975]: medicine itself makes us sick
and should be done away with. A variant on this argument
is that genetic screening will eventually determine that
all of us are "at risk," making everyone see
themselves as sick. More troubling, genetic diagnosis
might create a two-tier social system, divided between
those with relatively clean genes and those with genetic
disease. In other words, genetic diagnosis will make us
all genetically diseased. This would be even more
problematic if the genetic diagnosis was for a disease
which was not yet curable.
Some medicine makes some people sicker, but I hold
fast to the modernist promise that scientific progress
generally improves our lives and that knowledge is better
than ignorance. It is unlikely that we will ever force
people to know their likelihood of developing disease,
though perhaps we should educate parents and physicians
to be cautious about informing children of their risks.
In any case, we all know that we are at risk of dying,
and with or without genetic diagnosis people view the
medical history of their parents and relatives as
harbingers of things to come. Both knowing and refusing
to know one's genetic makeup are empowering choices for
competent adults; denying people the option of making
this choice does not improve their lives.
This argument also presumes just the first, screening
phase of the new eugenics, and not the latter correction
phase. Far from making everyone sick, the advance of
genetic therapy promises to make everyone well.
B. Bio-Luddism 2 : Sacred
Limits of the Natural Order
Rifkin has joined forces with religious leaders to
assert another fundamentalist tenet, that genetic
engineering transgresses sacred limits beyond which we
should not "play God" [Porter, 1990]. I
don't believe that divine limits are discernible, and I
don't believe in any "natural order" except the
one we've got. As Love and Rockets point out: "you
can't go against nature, 'cause when you go against
nature, its part of nature too." There are no
"natural limits" in our taking control of our
biology or ecology. There is no "natural" way
to have a baby or die. Even if there was a natural way to
birth, age or die, I don't believe we are morally
compelled to adopt it.
It may be that this idea of a divinely ordained
biological order is distinctly Judeo-Christian-Islamic,
and not shared by religions and cultures which believe in
different cosmogonies. In a 1993 survey of attitudes
towards genetic therapy in the Asia-Pacific region
(Australia, Hong Kong, India, Israel, Japan, New Zealand,
The Philippines, Russia, Singapore and Thailand) Daryl
Macer reports that there was overwhelming support for
genetic therapy to cure disease, and that almost no
respondents were concerned that the therapy violated the
natural order or God's plan [Macer, 1994].
C. Bio-Luddism 3 :
Technologies Serve Ruling Interests
Some hesitate to argue that medical technology is bad
in and of itself, but argue instead that the powerful
always shape and apply technologies to further their
domination of the less powerful [Hubbard and Wald, 1993].
While this is probably true, the conclusion is that all
technology should be abandoned. The wealthy and powerful
have more access to telephones than the poor and
powerless, and telephones are used by the wealthy and
powerful to collect more wealth and power. But I see the
answer to be subsidized phone service and egalitarian
social reform, not banning the telephone [Winner, 1986].
D. Bio-Luddism 4 : The Genome
is Too Complicated to Engineer
A fourth fundamentalist conviction is that the genome
is too complicated to engineer, and therefore there are
certain to be unpleasant, unintended consequences
[Glover, 1984: 33]. This argument is directly parallel to
the deep ecologists' conclusion that human management of
the complex global eco-system is impossible, and that our
only hope is to leave the planet alone to its own
self-organization. Arne Naess [Naess, 1973] and Devall
and Sessions [Sessions, 1980] are the modern touchstones
for the deep ecological philosophy which overlaps with
this biofundamentalist stupefaction in the face of
evolved complexity, while movements like Earth First!
take the argument to its reductio ad absurdum (AIDS is
good, etc.). Outside of the anti-environmental Right,
voices in defense of the possibility of eco-management
have been rare [Anderson, 1987].
The genome and eco-system are both very complicated,
and the ability to do more than correct local defects in
either may be many decades away. But eventually we will
have the capacity to write genetic code and re-engineer
eco-systems, and to computer-model the structural
consequences of our interventions on future bodies and
planets. Of course, it will be difficult to decide when
the consequences of a genetic blueprint are sufficiently
well-understood that it is safe for use, and our current
regulatory scheme is probably not yet adequate to the
task [Zallen, 1989; Ledley, et al., 1992; Ledley, 1991;
Areen and King, 1990; Council for Responsible Genetics,
Our understanding of the genome and ability to predict
consequences must be very robust before we allow human
applications or the release of animal applications. While
Elias and Annas [Elias and Naess, 1992] object to
"positive" germ-line therapy, which I would
defend, they propose two sensible preconditions on the
application of gene-engineering:
(a) that there should be considerable prior experience
with human somatic cell gene therapy, which has clearly
established its safety and efficacy; and
(b) that there should be reasonable scientific
evidence using appropriate animal models that germ-line
gene therapy will cure or prevent the disease in question
and not cause any harm, and
(c) all applications should be approved by the NIH's
Working Group on Gene Therapy and local Institutional
Review Boards, with prior public discussion.
Again. I also endorse the formulation of the Preliminary
Draft of a Universal Declaration on the Human Genome and
Human Rights [UNESCO International Bioethics Committee,
1995] which states that
7. No intervention affecting an individual's
genome may be undertaken, whether for scientific,
therapeutic or diagnostic purposes, without rigorous
and prior assessment of risks and benefits pertaining
Those of us who believe in the possibility of
effective public regulation may differ widely as to the
appropriate standards the public and these regulatory
bodies may use. But liberals and conservatives differ
fundamentally from those bio-Luddites who believe that
the natural world is so complicated, and governments so
unwise, that all intervention must be forbidden.
Undoubtedly, genetic design will undergo extensive
experimentation in the design of animals before any human
experimentation begins, and I see few ethical problems
with using animals for experiments in genetic design. The
problem with animal research is that it might produce
species that are dangerous if released into the
eco-system. Release of gene-engineered creatures should
be done very cautiously, and it may be that we should
have a moratoria on the release of geneticaly engineered
plants and animals until we have adequate oversight
[Council for Responsible Genetics, 1993]. Genengineered
micro-organisms are a much greater risk than
genengineered humans, since humans don't breed rapidly,
are completely vulnerable for years of childhood, are
large and visible, and can be controlled with firearms.
The next step will be to decide when genetic products
can be applied by adults to themselves, for therapeutic
or other reasons. It is possible to imagine social risks
from self-applied genetic modification, and we would
probably require genetic products to go through the same
Food and Drug Administration testing that pharmaceuticals
go through. On the other hand, I am in favor of
substantial liberalization of our drug and pharmaceutical
regulations, including the legalization of narcotics and
psychotropic drugs, and I am also for a fairly liberal
policy towards genetic self-modification.
The real dilemma with testing comes with the genetic
design of children [Fletcher, 1985]. Even if we had an
extreme market society which permitted unregulated
genetic modification of eggs, sperm and embryos, I
suspect that few women would risk bearing and raising
children whose "product safety" had not been
guaranteed. Nonetheless we will inevitably continue to
strictly regulate the genetic modification of children.
The safety and efficacy of genetic products will not only
be demanded by parents, but also by federal agencies and
While daunting, these are many of the same issues
raised by drugs and medical devices today. With or
without genetic design products we are moving to a new
phase of technological assessment of medical products
balancing the demands for demonstrated efficacy and
safety with demands for rapid release of useful
therapies, and the individual freedom to control one's
body. Genetic products will be only one of the ultimately
soluble challenges our regulatory scheme will face.
E. Gene Angst 1 : Fascist
Another concern expressed by many critics of genetic
technology is the dire consequences of the re-emergence
of fascist, racist and authoritarian regimes, and their
use of genengineering to produce compliant, genetically
uniform subjects. The first point to make about fascist
uses of eugenic ideology or technology is that nothing a
democratic society does to forbid itself genetic
technology will have any impact on future or contemporary
fascist regimes. Indeed, if there is any "national
security" to be gained from genetic technology then
it would behoove liberal democracies to gain them as
well. For instance, public health campaigns to detect and
correct the genetic predisposition to alcoholism, or to
enhance the intelligence of children, could make nations
much more powerful and productive than their more
conservative neighbors; would it not be in the interest
of democracy itself for democracies to pursue these
Yet, what if the fascist regimes found strength in
breeding different castes a la Brave New World, and
democracies could only meet the challenge by becoming
equally repugnant? This is a possibility, and it raises
the important point: the way to stop fascist uses of
genetics is to prevent the rise of fascism, not to
restrict the emergence of genetic technology. As we see
today with Iraq and North Korea, firm agreements by
right-thinking nations that only the United States and
other nuclear superpowers are sufficiently moral to be
allowed the ownership of nuclear and chemical weapons has
little impact on recalcitrant regimes. If we cannot
effectively prevent the proliferation of nuclear
technology, with its large radioactive facilities visible
to satellites, we will have even less success with
genetic laboratories. I support the strengthening of the
legal, judicial and military might of U.N. so that it
might begin to enforce global law, but I think the proper
task for such a New World Order is the suppression of
fascist regimes likely to use genetics for nefarious
ends, not the policing and suppression of outlawed
genetic technologies. Bonnicksen [Bonnicksen, 1994A] has
written a very complete review of the global efforts to
harmonize national policies towards genetics; the
responses to her piece [Cook-Deegan, 1994; Blank, 1994;
Chadwick, 1994; Fletcher, 1994; Knoppers and Bris, 1994; Mauron, 1994; Shapiro, 1994; Wertz, 1994; Winston, 1994;
Byk, 1994; Kielsten, 1994; Macer, 1994; Bonnicksen,
1994B] are also fascinating in that they generally
suggest a softening of the bioethics community toward
germ-line therapy, if not enhancement.
Genetic science does not itself encourage racism or
authoritarianism. In fact, the advance of scientific
knowledge may even erode the pseudo-scientific
basis on which most eugenics has rested. Presumably
the advance of genetic science will tell us whether there
is a genetic basis for gender and racial differences in
abilities, or not, and how important these are. If there
are genetic factors in gender or racial difference, they
will most likely be revealed as minor beside the social
factors, and the genetic factors will become ameliorable
through a technical fix. Some insist that knowledge
itself, or knowledge about forbidden topics, will lead to
fascism; I prefer the modernist optimism that knowledge
is at least neutral towards, and sometimes a scourge of,
F. Gene Angst 2 : The Value of
Another concern that is often expressed vis-à-vis
genetic engineering is the alleged aesthetic or
biological virtues of genetic diversity. Many refer to
the evidence from ecology that ecosystems are more stable
when they contain a greater diversity of gene-lines. Some
suggest, for instance, that our very survival as a
species might hinge on genetic diversity if we faced some
blight that only a few were resistant to.
The first objection to this argument is that diversity
is not a sufficiently compelling ethical or aesthetic
virtue that it can trump the prevention of disease, or
the improvement of the quality of our lives. We
"reduced diversity" when we eradicated smallpox
and polio, with no regrets. We "reduce
diversity" when we insist on compulsory education
because we don't value the diversity of extreme class
The second objection to the diversity argument is that
any loss of adaptiveness through biological diversity
will be compensated for by an increase in biological
knowledge and control. It is unlikely that a future
society would have the ability to create "superior
genes" and yet be unable to meet the challenge of
Third, the regime of genetics I have outlined is a
liberal one, which should produce as much diversity as it
reduces. While I support public provision of genetic
screening for disease, I oppose any eugenic coercion.
People desire different attributes and abilities, for
themselves and their children; for every Aryan parent
that chooses a blond, blue-eyed Barbie phenotype, I
expect there would be a Chinese parent choosing a classic
Chinese ideal of beauty. True, this might lead to the
convergence toward a few physical and mental ideals,
though I suspect that phenotypic fashions will change
quickly. But I see no ethical difference between
permitting people to change their genes in conformity
with social fashions, and permitting them to change their
clothes, makeup and beliefs to do so.
Perhaps there is some aesthetic or civic virtue in
phenotypic diversity. If it is valued by the public, let
us establish incentives for diversity. If the number of
parents choosing to raise blond boys is offensive to
public opinion, we can give tax incentives for parents
who bear dark-haired girls. In any case, we will quickly
know if there are broad trends that we find offensive,
and I trust our ability to craft non-coercive policy
responses to re-establish any valued diversity we
feel may be eroding.
H. Gene Angst 3 : The
Geneticization of Life
A more diffuse "cultural" concern about
genetic technology is that people will begin to see
genetics as more central and influential in life than
they should. For instance, Richard Shweder [Shweder,
1994] believes that eugenics and genetic determinism are
being fueled by contemporary genetic technology and
research, at the expense of attempts to ameliorate social
ills. Other critics, such as Barbara Katz Rothman
[Rothman, 1989], see genetic technology as contributing
to the reification of the genetic ties between people at
the expense of valuing their social relationships.
Both of these concerns have some legitimacy.
Undoubtedly the public will invest genetics with more
importance in the production of disease, intelligence and
other characteristics than will be warranted by a more
balanced scientific perspective. And as the current
market for in vitro fertilization shows, people will pay
astronomic sums for the chance at a genetic tie to their
children, when they would have otherwise had to adapt to
adoption in an earlier age.
Is the misapprehension of genetic influence, and
disproportionate concern with genetic ties made more or
less likely by the advance of genetic technology? When we
begin screening for the genes which make lung cancer more
likely, it won't take long for the "negatives"
to understand that they are still at risk from smoking or
asbestos. As genetic diagnosis and treatment become more
prevalent people will become as sophisticated about their
genetic diagnoses as they are about the risks of
cigarette smoking or cholesterol: risk-averse folks will
take their genetic propensities very seriously, and
risk-prone folks won't. If they lack an OB gene, and yet
get fat, they will redouble their dieting.
Parents will probably be less gene-obsessed when they
can either have a child with all their parents' genetic
flaws, or one that shares their facial features, but has
been tweaked with someone else's good teeth, arched feet,
height, and intelligence. It will considered obsessive
and dumb to give your kids only parental genes, and
parenting will be the definition of parental ties, not
As to Rothman's concern over the primacy of social
ties, fertility treatments, surrogacy and genetic
technology do not reify the genetic bond, but
cause its slow deconstruction [Macklin, 1991; Stanworth, 1988]. Just as heart-lung machines forced us
to confront the separability of heart and brain death,
genetic intervention will force us to clarify the
relationship of social ties and genetic ties. If you've
picked most of your child's genes from a catalog, its
likely to reinforce the importance of your social
parenting ties to your children.
Our ability to control genetics will help to clarify
the appropriate weight to give to genetics in culture and
social affairs. As the nature-nurture relationship
becomes clarified, people will not be any less likely,
probably more likely, to fix the nurture side of their
problems. What if some future polity determined that it
would be easier to genetically engineer resistance to
smog than to clean up industrial air pollution? It would
be a tragedy, but not really that different from our
struggles over toxics today, which we compensate for
through health care expenditures. Genetic technology
won't make it any less likely that we will have an
ecologically sane, healthy or equal society, only that
our fall-back options will be more effective.
I. Gene Angst 4 : Genetic
Discrimination and Confidentiality
Many opponents of genetic investigation are concerned
that growing genetic knowledge will lead to
discrimination against the "genetically diseased and
disabled." Some assert that genetic therapy itself
will increase this discrimination by bringing intense
pressure to bear on those with genetic diseases to have
the disease corrected, and not burden society and future
generations with their diseases.
It is certainly true that employers are already
attempting to discover the genetic risks of their
employees, and deny employment or health insurance on the
basis of this risk profile. . A
bill guaranteeing the confidentiality of genetic
information has been introduced in the U.S. Congress,
and while it has not yet passed, some form of
confidentiality is certain to be guaranteed by the turn
of the millennium. In addition, the Americans with
Disabilities Act and similar legislation in the U.S. will
clearly be mustered to defend workers from genetic
discrimination. The U.S. Human Genome Project's Task
Force on Genetic Information and Insurance has
recommended that genetic screening be accompanied by
universal access to insurance, and that genetic screening
not be used to deny insurance [Murray, 1993].
Internationally, there is also a consensus on these
reforms, expressed for instance in the Preliminary
Draft of a Universal Declaration on the Human Genome and
Human Rights [UNESCO International Bioethics Committee.
1995] which states that
8. No one may be subjected to discrimination on
the basis of genetic characteristics and that aims or
has the effect of injuring the recognition of human
dignity or the enjoyment of his or her rights on the
grounds of equality.
9. The confidentiality of genetic data associated
with a named person and stored or processed for the
purposes of research or any other purpose, must be
protected from third parties.
Keeping genetic information confidential from insurers
and other non-medical personnel in the health care system
is trickier, since the records will show any special
screening or treatment that genetic risks called for.
Unregulated, the use of genetic risk information could
greatly strengthen the ability of insurers to exclude the
illness-prone from their risk pools, or charge them
premiums equivalent to the costs of their potential
treatments. Again however, popular insurance reform
legislation before the U.S. Congress will ban
"risk-rating" and excluding clients with
"pre-existing conditions." These two reforms
will likely reduce the number of insurance companies in
the country by half or more, and make genetic
discrimination in health insurance a more or less moot
point. Some have suggested further that the pervasiveness
of genetic information will make private health insurance
impossible; to which I say, good riddance.
There are undoubtedly many other nefarious uses to
which knowledge of someone's genetic make-up can be put.
But genetic information is only one small category of the
information about our lives which is potentially in the
public domain, and potentially injurious. The regulation
of genetic technology really has very little to do with
whether we establish data privacy in the 21st century.
J. Gene Angst 5 :
Systematically Bad Decisions by Parents for Children
The right to a "custom-made child" is merely
the natural extension of our current discourse of
reproductive rights. I see no virtue in the role of
chance in conception, and great virtue in expanding
choice. To reiterate my starting points, embryos and
fetuses are biological property and parents should be
allowed to modify or terminate them as they see fit,
within broad social constraints. If women are to be
allowed the "reproductive right" or
"choice" to choose the father of their child,
with his attendant characteristics, then they should be
allowed the right to choose the characteristics from a
What then are the broad social limits to be placed on
parents genetic decisions? It is obvious that our polity
can and should place limits on the genetic decisions
parents make. Glover [Glover, 1984] asks, for instance,
what if a religious minority were to engineer a sign of
their faith on their children's foreheads, and engineer
their brains to be incapable of reading in order to
prevent apostasy? Certainly I would accept an
intervention against parents who wanted to systematically
deprive their children of abilities, though I am not so
certain about the religious symbol.
Or take the case of sex selection, which has been a
very sore point for pro-choice bioethics. While we may
find gender-biased parents distasteful, it clearly
preferable that parents have wanted children
rather than unwanted children, and it is their
right to decide what they want. It should also be a goal
of public policy to discourage infanticide, even if the
result is an increase in abortions, and to make abortion
unnecessary by increasingly the availability of
preconceptual choice. Potential women are not women, and
so they have no standing in a claim that parental
preferences violate their rights.
Sex selection becomes a matter of public concern if
parents' decisions cumulate to undesirable outcomes, such
as sex imbalanced populations. There is ample evidence
that prenatal diagnosis in China and India [Kusum, 1993]
leads to almost exclusive abortion of female fetuses. It
still isn't obvious to me what the problem is with sex
imbalance in the population. The supposition that fewer
women in the next generation reduces the power of women
as a demographic group may be true, though rather
simplistic, and not yet a compelling reason for taking
away the reproductive liberty of this generation of
women. Fewer women will reduce the population growth
rate, which is probably a welcome outcome, though two
sexes will soon be as unnecessary for reproduction as
they are for parenting. Men may find it harder to find
brides, and be forced to consider the virtues of
celibacy, masturbation, polygyny and homosexuality, which
again should be no concern of the State.
In any case, if there was a public gnashing of teeth
and tearing of hair at the emerging sex imbalance in baby
population, we'd have several years to think about policy
responses. As I suggested above, my preference would be
financial incentives to pursue other choices, rather than
coercion. The point is that we would have ample
opportunity to confront these challenges as we proceed,
and need not impose hasty preemptive bans.
K. Gene Angst 6 :
Discrimination Against the Disabled
Opponents of sex selection and of eugenic efforts
against genetic disease argue that these decisions are
acts of prejudice against women and the disabled, and
perpetuate the second class status of women and the
disabled by focusing on genetic rather than social
amelioration. In the first place, embryos and fetuses are
not persons, and therefore their rights cannot be
violated as persons or as members of oppressed social
groups. While parents may make reproductive decisions for
many reasons we disapprove of, such as aborting a fetus
because the father was accidentally of the
"wrong" race, this is not a reason to
The alleged link between choosing to abort a disabled
child, or correcting their disability through genetic
therapy, and the perpetuation of oppression of the
disabled seems tenuous at best. Perhaps by reducing the
population of disabled we reduce their power at the
ballot box. But a parent's moral obligation to give their
children the greatest quality of life, and the fullest
range of abilities, includes not only the obligation to
treat a disabled child with respect and love, but also
the obligation to keep them from having disabilities in
the first place. It also seems likely that a society with
fewer disabled would increase rather than decrease their
per capita expenditures on the disabled.
L. Gene Angst 7 : Unequal
Access, Priority Setting and the Market
As a social democrat, one of my gravest concerns is
how social inequality will constrain access to genetic
technology, and how genetic technology may reinforce
social inequality. Establishing the appropriate balance
of state and market in genetics starts with the creation
of a national health budget, most likely through the
creation of a national health system, such as the Clinton
plan or some other form of national health insurance.
Such a system allows the ethical determination of utility
trade-offs, from what the level of health care
expenditures should be, to what should be included in the
basic package of guaranteed medical services and what
should be consigned to the private medical market. I
believe the Oregon experiment in public, accountable,
utility-theory-based rationing is the model for this kind
of priority allocation. The Clinton administration's plan
for health care reform would also have established a
minimum universal package of health benefits, and
permitted plans to compete on the basis of additional
If we had such a system, I don't think most fertility
treatments would make the cut into the minimum universal
package. Future positive genetic "enhancements"
would not be included until safety, efficacy and
voluntariness was adequately assured. On the other hand,
genetic screening and corrective genetic therapy would
clearly be socially acceptable, cost-effective, and
therefore a plausible positive right. This leaves me in a
quandary - I want reproductive technologies and genetic
therapies to be legal and available to all who want them
regardless of income, but I'm not prepared to argue that
they are a positive right worthy of public subsidy. Yet,
if gene products are left in the market, only the wealthy
will have access to them, with the upper-classes having
more life opportunities and potentially becoming
genetically healthier and more intelligent than the poor,
which is unethical in an equal opportunity society
These problems are really a sub-category of the larger
task of determining which medical tests and procedures
- required by law, e.g. vaccinations
- publicly funded, but not obligatory, e.g. abortion
in progressive states
- encouraged, but unsubsidized, e.g. exercise
- discouraged, but not banned, e.g. smoking
- banned., e.g. heroin
Any assignment of genetic technologies to the
categories between obligatory and forbidden allows for
potential inequality. Most opponents of genetic
technology, when pressed, would stop short of banning
these technologies out-right, and thus leave them to be
inequitably distributed by the market. At the other
extreme, outside of science fiction [Wagar, 1989], there
are no audible voices calling for a program of mandatory,
universal genetic redesign. This leaves me with Glover in
the usual social democratic, mixed-market middle: try a
little public, and a little private, and we will tinker
with it as we proceed.
A parallel, and very intriguing, question is whether,
when, and by whom genetic
products may be owned, patented and profited from.
Genetically designed animals began to be patented in
1987. The U.S. Congress has rejected the patentability of
human beings, but the Patent Office has accepted the
principle that parts of the human genome may be patented
once their functions have been determined. The Bush
administration's NIH attempted to protect future
commercial and scientific research by patenting stretches
of DNA which had been decoded, but whose function had not
been identified, raising the additional question of what
the proper role is for public property in genetics.
American Human Genome Project scientists have entered
into lucrative commercial biotechnology ventures,
profiting from their publicly-funded research [Fisher,
1994]. Again, the social democratic muddle is that there
must be sufficient protection of genetic products
encourage innovation, while at the same time there must
also be a strong presumption in favor of public ownership
of genetic code and medical knowledge as the common
property of humanity.
Fishman's [Fishman, 1993] article "Patenting
Sub-Human Beings..." provides a detailed discussion
of the current status of animal and human genetic patents
in U.S. Constitutional law, and the confused future
status of intermediate transgenic species. She proposes
an amendment to the Patent Act defining "human
being" as either a being possessing one of a number
of higher cognitive faculties not yet found in other
primates, or the progeny of a human mother and human
father. I believe the former formula is the direction to
go; the current debates over anencephaly and severely
disabled newborns suggest to me that not all human
progeny are, or should be, accorded "humanity,"
if humanity means a "right to life." Attempting
to determine the cognitive faculties of different forms
of life, human, non-human and intermediate, and
allocating rights according to these faculties suggests
the possibility of a general decision-rule free of
(human) racial prejudice.
M. Gene Angst 8 : The Decline
of Social Solidarity
Finally some critics suggest that parents would become
alienated from their genetically engineered children.
Dator [Dator, 1989] and other post-humanists suggest that
genetic engineering and other technologies may create
conflict between humans and post-humans, and threaten
social solidarity. I think this is a serious concern, and
one goal of the social regulation of genetic technology
would be to moderate the rapidity with which society
genetically advances and diversifies. The gaps between
the bodies and abilities of parents and children should
not be so great as to make parenting impossible. Also the
unenhanced public's concerns will inevitably be a factor
in regulating the enhancement of the modified minorities.
While some of these conservative concerns may be
warranted, if the enhanced feel they have no
responsibility to the unenhanced and seek to dominate or
exploit them, we must also avoid allowing simple
chauvinism and fear of the unknown to stop genetic
While tremendous social conflicts can be imagined,
they are not that different from the conflicts between
ethnic minorities and majorities, or between the First
World and the Third, or between social classes. Like
other sources of social division, the relations between
new genetic communities will hopefully be mediated by the
same institutions, courts and legislatures, minority
rights and majority rule. The real challenge faced by a
post-human ethic is to define new parameters for which
forms of life should be considered property, social wards
(neither property nor competent persons, such as
children), and persons with full citizenship.
In the midst of a current health care debate, with
ethicists and humanists urging us to embrace financial
and existential limits, and give up the quixotic quest
for immortality, the post-humanists say "Some alive
today may never die." The potential problems created
by new medical technology are numerous, and we must work
hard to ensure that our societies are such that they
create more good than harm. But I believe this an
achievable goal, and that genetic technology offers, if
not immortality, such good that the risks are dwarfed.
Like all speculation (and all utilitarian judgments are
based on social speculation) this optimism is founded on
numerous points of faith. But I find faith in the
potential unlimited improvability of human nature and
expansion of human powers far more satisfying than a
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