Introduction
The
Basic Science
A
New Ideology
What
Is to be Done?
The
Current Policy Landscape
Towards
an International Policy Regime
Conclusion
Introduction
We are fast approaching arguably the most consequential technological
threshold in all of human history: the ability to alter the
genes we pass to our children.
Crossing this threshold would irrevocably change the nature
of human life and human society. It would destabilize human
biology. It would put into play wholly unprecedented social,
psychological and political forces that would feed back upon
themselves with impacts quite beyond our ability to foresee,
much less control.
Advocates of this new techno-eugenics look forward to the
day when parents quite literally assemble their children from
genes listed in a catalogue. They celebrate a future in which
our common humanity is lost as genetically enhanced elites increasingly
acquire the attributes of separate species.
The implications for individual integrity and autonomy, for
family and community life, for social and economic justice and
indeed for world peace are chilling. Once humans begin cloning
and genetically engineering their children for desired traits
we will have crossed a threshold of no return.
The world community is only just beginning to understand the
full implications of the new human genetic technologies. There
are few civil society institutions, and there is no social or
political movement, critically addressing the immense challenges
these technologies pose.
We need to move with all deliberate speed to bring the new
human genetic technologies within the ambit of responsible societal
governance. National and international leaders and civil society
constituencies need to inform themselves about critical aspects
of the new human genetic technologies and join together to build
nothing less than a new civilizational commitment to fully engage
this threshold challenge.
The Basic Science
Many applications of human genetic technology are benign and
hold great potential for preventing disease and alleviating
suffering. Other applications open the door to a human future
more horrific than our worst nightmares. We need to distinguish
between these, and support the former and oppose the latter.
The two technologies of most concern are human cloning and
inheritable genetic modification.
Cloning is the creation of a genetic duplicate of an
existing organism. Human cloning starts by creating a human
embryo that carries the same set of genes as an existing person.
If this embryo is used for research purposes—say, for generating
some types of stem cells—the process is called research
cloning. If instead the embryo is implanted in a woman's uterus
and brought to term to produce a child, the process is called
reproductive cloning.
Genetic modification means changing the genes in a living
cell. There are two types of genetic modification: non-inheritable
genetic modification and inheritable genetic modification. Non-inheritable
genetic modification changes the genes in cells other than egg
or sperm cells. If a lung disease is caused by defective lung
cell genes, it might be possible to treat the disease by modifying
the genes in those lung cells. Such changes are not passed to
future children. Applications of this sort are currently in
clinical trials, and are generally considered to be socially
acceptable.
Inheritable genetic modification (IGM) changes genes
in eggs, sperm, or very early embryos. These changes not only
affect the child immediately born but are passed down to that
child's descendants as well, in perpetuity. This application
is by far the more consequential, for it opens the door to the
reconfiguration of the human species. (The technical terms for
non-inheritable and inheritable genetic modification are somatic
and germline genetic modification, respectively.)
Many people assume that inheritable genetic modification is
needed to allow couples to avoid passing on genetic diseases
such as Tay Sachs or sickle cell anemia. This is not so. More
acceptable and straightforward means already exist to accomplish
this same goal, in all but a very few cases. In the technique
known as pre-implantation screening, couples at risk of passing
on a gene-related disease use in-vitro fertilization to conceive
several zygotes, after which those found to be free of the harmful
gene are implanted and brought to term. No modification of genes
is required. Options such as adoption and egg, sperm and embryo
donation are also available. Inheritable genetic modification
is necessary only if a couple wish to "enhance" a
child with genes neither of them carry. A New Ideology
Advocacy of cloning, inheritable genetic modification and
the new eugenics is an integral element of a newly emerging
socio-political ideology. This ideology differs from conservative
ideologies in its antipathy towards religion and traditional
social values, from left-progressive ideologies in its rejection
of egalitarian values and social welfare as a public purpose,
and from Green ideologies in its enthusiastic advocacy of a
technologically reconfigured and transformed natural world.
It embraces commitments to science and technology as autonomous
endeavors properly exempt from social control, to the priority
of market outcomes, and to a political philosophy grounded in
social Darwinist views of human nature and society.
This ideology is gaining acceptance among scientific, high-tech,
media and policy elites. A key foundational text is Remaking
Eden: Cloning and Beyond in a Brave New World by molecular
biologist Lee Silver of Princeton University. Silver looks forward
to a future in which the health, appearance, personality, cognitive
ability, sensory capacity and life span of our children all
become artifacts of genetic modification. Silver acknowledges
that the costs of these technologies will limit their widespread
adoption, so that over time society will segregate into the
"GenRich" and the "Naturals." In Silver's
vision of the future:
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"The GenRich—who account
for 10 percent of the American population—all carry
synthetic genes. All aspects of the economy, the media,
the entertainment industry, and the knowledge industry are
controlled by members of the GenRich class…. Naturals
work as low-paid service providers or as laborers….
[Eventually] the GenRich class and the Natural class will
become entirely separate species with no ability to cross-breed,
and with as much romantic interest in each other as a current
human would have for a chimpanzee." |
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Silver continues:
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"Many think that it is inherently
unfair for some people to have access to technologies that
can provide advantages while others, less well-off, are
forced to depend on chance alone…. [But] American society
adheres to the principle that personal liberty and personal
fortune are the primary determinants of what individuals
are allowed and able to do. Indeed, in a society that values
individual freedom above all else, it is hard to find any
legitimate basis for restricting the use of repro-genetics….
I will argue [that] the use of reprogenetic technologies
is inevitable… [W]hether we like it or not, the global
marketplace will reign supreme." (from Remaking
Eden: Cloning and Beyond in a Brave New World (New York:
Avon Books, 1997), pages 4-7, 11) |
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Silver is hardly alone. Here's James Watson, co-discoverer
of the structure of DNA, Nobel laureate and founding director
of the Human Genome Project:
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"And the other thing, because
no one has the guts to say it, if we could make better human
beings by knowing how to add genes, why shouldn't we? What's
wrong with it?… Evolution can be just damn cruel, and
to say that we've got a perfect genome and there's some
sanctity to it? I'd just like to know where that idea comes
from. It's utter silliness." (quoted in Engineering
the Human Germline: An Exploration of the Science and Ethics
of Altering the Genes We Pass to Our Children, Gregory
Stock and John Campbell, eds. (New York: Oxford University
Press, 2000), pages 79, 85) |
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And here's Dr. Gregory Pence, professor of philosophy in the
Schools of Medicine and Arts/Humanities at the University of
Alabama:
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"[M]any people love their retrievers
and their sunny dispositions around children and adults.
Could people be chosen in the same way? Would it be so terrible
to allow parents to at least aim for a certain type, in
the same way that great breeders…try to match a breed
of dog to the needs of a family?" (from Who's Afraid
of Human Cloning? (Lanham, MD: Rowman & Littlefield,
1998), page 168) |
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Or consider this excerpt from an interview with University
of Pennsylvania bioethicist Arthur Caplan:
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"'[M]aking babies sexually will
be rare,' Caplan speculates…[M]any parents will leap
at the chance to make their children smarter, fitter and
prettier. Ethical concerns will be overtaken, says Caplan,
by the realization that technology simply makes for better
children. 'In a competitive market society, people are going
to want to give their kids an edge,' says the bioethicist.
'They'll slowly get used to the idea that a genetic edge
is not greatly different from an environmental edge.'"
(from ABCNEWS.com: Babies of the Future)
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Here's noted economist Lester Thurow of MIT:
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"Some will hate it, some will
love it, but biotechnology is inevitably leading to a world
in which plants, animals and human beings are going to be
partly man made…. Suppose parents could add 30 points
to their children's IQ. Wouldn't you want to do it? And
if you don't, your child will be the stupidest child in
the neighborhood." (from Creating Wealth: The New
Rules for Individuals, Companies and Nations in a Knowledge-Based
Economy (New York: Harper Collins, 1999), page 33) |
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Can it get worse than this? Yes. In Germany recently an uproar
ensued following statements by philosopher Peter Sloterdijk
that the failure of social democracy now leaves human genetic
engineering (which he referred to as "Selektion,"
a word associated with Nazi genocide) as the only means for
humanity to improve its lot.
In the last few years advocates of the new techno-eugenics
have become increasingly vocal and confident. They are taking
lead roles in organizing major conferences, establishing policy
institutes and membership-based advocacy groups, sitting on
government panels and corporate ethical advisory boards, publishing
a steady stream of serious books and articles, and more. These
are the sorts of activities that mark the emergence of a new
ideological and political movement.
What Is to be Done?
Recent discussions among concerned scientists, health law
experts, human rights leaders, environmentalists, social and
economic justice advocates, women's health experts, indigenous
peoples organizations and others suggest three policies as the
minimal necessary core of a regime addressing the most dangerous
applications of the new human genetic technologies:
 National
and global bans on reproductive human cloning
National
and global bans on inheritable genetic modification
Effective,
accountable regulation of all other human genetic technologies
If we are to prevent an escalating and potentially catastrophic
spiral of human genetic modification, we will need global bans
on both reproductive human cloning and inheritable genetic modification.
The bans need to be global to prevent the establishment of eugenic
tourism. Further, the bans need to be intended to be permanent.
Of course, we can't bind the actions of our descendants, and
if they someday decide to repeal these bans they can. But we
have the responsibility to make a clear statement, as the human
community at this point in history, that we consider human cloning
and inheritable genetic modification to be profoundly unacceptable.
The proposed global bans are an affirmation among the several
generations alive today that we will work to build a human future
in which reproductive human cloning and inheritable genetic
modification are not done.
Pre-natal and pre-implantation testing, sex selection, embryo
research and other practices have or may have potentially acceptable
applications. However, if these are not brought under effective
and accountable societal control the danger exists that they
could be used in ways that are unacceptable in themselves and
that could erode the commitment to forgo reproductive cloning
and inheritable genetic modification. A framework needs to be
established to allow humanity as a whole to assess the need
for regulation and control of such technologies. Further, individual
countries need to be able to proscribe applications of these
technologies that they find unacceptable.
We believe that this set of policies is practicable and can
attract support from the great majority of the world's countries.
All three policies are already in force in one country or another,
as described below. The challenge before humanity is to agree
that these policies are important enough to require universal
adoption.
The Current Policy Landscape
Human Cloning
In 1997 scientists at the Roslin Institute in Scotland announced
that they had successfully cloned a sheep. This event triggered
a worldwide outcry concerning the potential application of this
technique to humans. Many countries banned human cloning, and
several international bodies—including UNESCO, the Council
of Europe, the European Parliament, the G8, and the World Health
Assembly—all took a strong stands against the cloning of
human beings.
In 1997 UNESCO adopted a non-binding Declaration on the
Human Genome and Human Rights, signed by 186 nations and
endorsed by the United Nations General Assembly. Article 8 of
the Declaration prohibits "practices which are contrary
to human dignity, such as reproductive cloning of human beings."
This initiative helped establish legitimacy for the policy of
a global ban, but its non-binding nature renders it advisory
rather than authoritative.
The most authoritative multilateral initiative taken to date
to ban human cloning was the Council of Europe's 1998 protocol
to its Convention on Human Rights and Dignity with Regard
to Biomedicine. The protocol prohibits "any intervention
seeking to create a human being genetically identical to another
human being, whether living or dead." The protocol was
opened for signatures on January 12, 1998 in Paris. As of March
2003 it had been signed by 29 of the Council's 41 member states
and had been ratified by thirteen of these.
Other countries that have passed national legislation banning
human cloning include Australia, Austria, Argentina, Brazil,
Costa Rica, Finland, France, Germany, India, Israel, Italy,
Japan, Mexico, Norway, Peru, South Africa, Sweden, Switzerland,
Trinidad y Tobago, and the United Kingdom. Some of these laws
pertain to human reproductive cloning only, while others also
place restrictions on the creation of clonal embryos. As of
March 2003 about 34 countries had banned human reproductive
cloning. While encouraging, this represents a minority of the
world's population. (See http://www.glphr.org/genetic/genetic.htm
for national policies throughout the world.) The unsubstantiated
claims in December 2003 by a Canadian-based sect of a successful
cloning attempt caused leaders in several countries to ramp
up efforts to ban human cloning.
Although support in the US Congress for a ban on reproductive
cloning is strong there are sharp disagreements regarding research
cloning, and the legislative prospects are uncertain. During
the 2001-2002 sessions, the House of Representatives passed
a bill banning both reproductive and research cloning, but neither
proposed bill in the Senate was able to secure enough support.
The Food and Drug Administration (FDA) has stated that it has
jurisdiction over human cloning, and has signaled that it will
work to prevent it. Yet the FDA is required by law to restrict
its criteria for approval of a process to those of safety and
efficacy. The FDA is expressly prohibited from considering ethical
or social concerns when evaluating a proposal.
Advocates of human reproductive cloning hope to make it happen
before a global ban is in place, in the expectation that opposition
will weaken in the face of a fait accompli. Estimates as to
when we could expect the birth of a human clone, if no action
is taken to prevent this, range from immediately to five or
ten years. If the birth of a clonal child is announced before
bans are in place, opponents of human cloning will need to respond
in ways that will build support for policies that will keep
such an event from ever happening again.
Inheritable Genetic Modification
Some countries have sought to ban inheritable genetic modification,
but not as many as have taken action against cloning. As with
cloning, the Council of Europe's Convention on Human Rights
and Dignity with Regard to Biomedicine stands as the most
encouraging international initiative to date. Article 13 of
the Convention states: "An intervention seeking
to modify the human genome may only be undertaken for preventive,
diagnostic or therapeutic purposes and only if its aim is not
to introduce any modification in the genome of any descendants."
The Convention has been signed by 31 of the 41 member
states of the Council of Europe and has been ratified directly
by fifteen of them.
Other countries that have passed laws or regulations that
explicitly or implicitly proscribe inheritable genetic modification
include: Australia, Austria, Costa Rica, Denmark, France, Germany,
Hungary, India, Israel, Japan, Norway, Peru, Spain, Sweden,
Trinidad and Tobago, and the United Kingdom. See http://www.glphr.org/genetic/genetic.htm
for national policies throughout the world.
In the United States the Food and Drug Administration (FDA)
claims authority to approve proposals involving gene transfer.
As with cloning, its criteria are restricted to safety and efficacy.
The World Health Organization and World Health Assembly occupy
key positions concerning human genetic technology policy. These
bodies are global rather than regional and their mandates are
operational, not merely advisory. In 1999 a Consultation on
Ethical Issues in Genetics, Cloning and Biotechnology was held
to help assess future directions for the WHO. The major report
prepared as part of this Consultation, Medical Genetics and
Biotechnology: Implications for Public Health, was notable
in calling explicitly for a global ban on inheritable human
modification. The WHO has since then established an advisory
committee on human genetic technologies.
The most secure way to ban inheritable genetic modification
in any country is to enact national legislation. Treaties, codifications
or other multilateral instruments will be needed to secure agreement
among all countries to pass such legislation and in that manner
institute a global ban.
Regulation of Other Human Reproductive and Genetic Technologies
Countries differ widely concerning the types of reproductive
and genetic technologies they regulate, the procedural rules
and the jurisdiction of authority. For regulation to be effective
there must be a national authority responsible for licensing
all research and commercial facilities involving human embryos
and gametes and empowered to revoke licenses when necessary.
A frequently cited model for an effective structure of regulation
is the Human Fertilization and Embryology Authority (HFEA) in
the United Kingdom.
The Council of Europe's Convention seeks to regulate
genetic testing, embryology, sex selection and other applications.
Article 11 provides that "Any form of discrimination against
a person on grounds of his or her genetic heritage is prohibited."
Article 12 provides that predictive genetic tests shall only
be carried out for health or scientific research purposes, and
requires that any person undergoing such testing must be subject
to non-directive counseling. Article 13 states that human embryos
shall not be created for research purposes. Article 14 states
that techniques may not be used to choose a future child's sex,
except where serious hereditary sex-related disease is to be
avoided. Towards an International Policy
Regime
In 2001 the United Nations initiated a process intended to
lead to a binding international convention banning human cloning.
This historic effort should be seen as the first step towards
a more comprehensive set of policies. Great skill and sensitivity
will be needed to craft a convention and a process that allows
the world's nations to agree to ban those technologies about
which a quick consensus should be possible, such as reproductive
cloning and inheritable genetic modification, while allowing
for subsequent consideration of those technologies about which
consensus will be more difficult to achieve, such as gene patenting
and embryo research.
The "Civil Society Deficit"
Given the enormity of what is at stake and the fact that advocates
of the new techno-eugenics are hardly coy about their intentions,
it is remarkable that global civil society has not given these
developments more attention. Every important issue complex on
the world stage—war and peace, economic growth and equity,
social inclusion and exclusion, race and gender equality and
the rest—is today accompanied by a dense infrastructure
of civil society institutions, academic centers, philanthropic
programs, NGO coalitions and more. But none of these exist,
to any considerable extent, regarding the social and political
issues raised by the new human genetic technologies. Why is
this?
One reason is that the most consequential technologies have
been developed only within the last few years—there simply
hasn't been time enough for people to become aware of what is
happening or of the stakes involved. Further, the prospect of
"re-designing the human species" is unlike anything
that humanity has ever before had to confront. People have trouble
taking this notion seriously—it seems fantastical and beyond
the limits of what anyone would actually do or that society
would allow. In addition, attitudes concerning the prospect
of human genetic modification don't fit neatly along the conventional
ideological axes of right/left or conservative/liberal—they
track more neatly along a less institutionally expressed libertarian/communitarian
axis. All these factors work to impede a prompt response from
world leaders and institutions. Initiatives intended to redress
this civil society deficit are of the highest importance. Conclusion
Although the work needed to achieve global conventions banning
human reproductive cloning and inheritable genetic modification,
and establishing adequate regulation of other human genetic
technologies, may seem daunting, it is imperative that world
leaders affirm the need for such policies now and set the procedures
in motion that will make them possible. There is no more important
task and there is not much time available. The future of our
common humanity is at stake.
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