|
A peer-reviewed
electronic journal published by the Institute for Ethics and ISSN
1541-0099 18(1)
– May 2008 |
Enhancing Human Rights:
How the Use of Human Rights Treaties to Prohibit Genetic Engineering Weakens Human Rights
Martin Gunderson
Department of Philosophy
Macalester College
Journal
of Evolution and Technology - Vol. 18 Issue 1 – May 2008
– pgs 27-34
http://jetpress.org/v18/gunderson1.html
Abstract
Genetic engineering for purposes of human enhancement
poses risks that justify regulation. I argue, however, that it is inappropriate
to use human rights treaties to prohibit germ-line genetic engineering whether therapeutic
or for purposes of enhancement. The scope and weight of human rights make them
poor tools for regulating a rapidly developing technology such as genetic
engineering. On the other hand, international treaties are appropriate
regulatory tools as long as prohibitions are not put in terms of human rights.
Introduction
It is easy to sympathize with those who
are concerned about human genetic engineering. While the use of genetic
engineering for therapeutic purposes that do not affect future generations has
held out great promise and inspired a range of studies, it has also led to
problems including deaths and leukemia (Boylan and Brown 2001, 29). Germ-line
engineering, which affects future generations, holds out the promise of
preventing genetic diseases, especially monogenetic diseases such as
hemophilia, Franconi’s anemia and amyotropic lateral sclerosis, but it is not
clear what the risks will be. There are also dreams of using genetic
engineering for purposes of enhancing human traits. While it is not clear at
present how far we will be able to accomplish this, if we are successful it may
create troublesome inequalities and worries about changes in human nature
itself. Some fear not just untoward side effects, but catastrophe. Francis
Fukyama writes about humanity being transformed into a posthuman future, and
Lee Silvers worries that humans might be engineered to the point where there
are separate species of the GenRich and the Naturals (Fukuyama 2002; Silvers
1997, 246-247).
Those who are impressed with visions of
potential dystopias sometimes argue that humans have a human right to their own
genetic identity. According to George Annas, Lori Andrews and Rosario Isasi,
“cloning and inheritable genetic alterations can be seen as crimes against humanity”
(Annas et al 2002, 153). The European Parliament has adopted a resolution
providing that people have a human right to their own genetic identity
(European Parliament, 1998, Article 1). Several international treaties have
also grounded prohibitions of germ-line genetic engineering and non-therapeutic
genetic engineering on human rights (Council of Europe 1997, Article 13)
It is clear that regulation will be
needed as we move forward. But what
form should the regulations take? I
argue that it is a serious mistake to adopt human rights treaties that
specifically prohibit all germ-line engineering or all genetic engineering for
purposes of human enhancement on the grounds that such genetic alterations
violate human rights. I also argue that it is a mistake to use human rights
treaties to ban human reproductive cloning. The adoption of treaties based on
such putative human rights, serve to weaken human rights generally.
International treaties regulating human genetic engineering are appropriate,
but any prohibition should be viewed as a temporary regulation based on risk
assessment and cultural values that can change in light of new developments –
not as a human right.
I begin by noting several current
international human rights treaties and a proposed international human rights
treaty to prohibit certain forms of human genetic engineering. I then discuss
general features of human rights that need to be reflected in human rights
treaties. Finally, I turn to a consideration of germ-line genetic engineering and
genetic engineering for purposes of enhancement.
Human
Rights Treaties and Proposals
The clearest prohibitions of germ-line
and non-therapeutic genetic engineering are to be found in The Council of
Europe’s Convention for the Protection of Human Rights and Dignity of the
Human Being with regard to the Application of Biology and Medicine: Convention
on Human Rights and Biomedicine.
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. (Council of Europe
1997.)
This appears to ban reproductive cloning,
and the The Council of Europe’s Additional Protocol on the Prohibition of
Cloning Human Beings removes any doubt. Article 1 of the Additional
Protocol makes it clear beyond doubt that reproductive cloning of humans is
prohibited (Council of Europe 1998, Article 1). Article 11 of UNESCO’s Universal Declaration on the Human
Genome and Human Rights, also prohibits human reproductive cloning, and
Article 12(b) implicitly rules out genetic engineering for purposes of
enhancement (UNESCO 1997). Article 12(b) states,
The
applications of research, including applications in biology, genetics and
medicine, concerning the human genome, shall seek to offer relief from
suffering and improve the health of individuals and humankind as a whole.
(UNESCO 1997.)
These prohibitions are closely tied to
previously accepted human rights. Violations of the prohibitions are said to be
violations of dignity and hence of the human right to respect for dignity.
Article 2(A) of UNESCO’s Universal Declaration on the Human Genome and Human
Rights, for instance, states in part that “everyone has a right to respect for
their dignity...” (UNESCO 1997).
Additional international human rights
treaties have also been proposed. Annas et al. propose an international
“Convention on the Preservaton of the Human Species” that would outlaw
germ-line genetic engineering and cloning (Annas et al. 2002, 154-157). They
argue that germ-line engineering may one day be able to alter human nature and
hence to undermine the common human nature on which the system of human rights
depends (Annas et al 2002, 153). Along these lines, it might be thought that if
there are any human rights at all, then there is a human right not to have the
necessary conditions for the having of such rights altered.
What is striking about these documents is
how specific, and yet how sweeping, the prohibitons are. They are specific in
that they single out certain specific areas of genetic engineering –
reproductive cloning, germ-line genetic engineering, and, in some cases,
non-therapeutic genetic engineering. They are sweeping in that such activities
are simply prohibited – now and forever.
Capturing
Human Rights in Treaties
It is important to begin by reflecting on
both the scope and weight of human rights. Consider, first, issues of scope. If
there are human rights, they belong to all humans. Human rights are the rights
of future humans as well as humans currently alive. They do not change from
generation to generation. Nor do they change from culture to culture, though
different cultures and different generations will interpret human rights
differently and apply them with various statutes and regulations. This does
not, of course, mean that every culture in the world does in fact accept human
rights, for there are societies where human rights are routinely violated.
Treaties that capture the scope of human
rights must have certain features. As James Nickel notes, their articles or
provisions must be stated in sufficiently broad language that they can apply to
different cultures throughout the world (Nickel 1987, 74-81). For human rights
treaties to be effective, different cultures must be capable of providing
different interpretations. In order to accomplish this, the rights should be
stated in terms of principles rather than rules, to use Ronald Dworkin’s
distinction (Dworkin 1977, 22-28). Principles constitute reasons for action,
but they do not necessitate action. Rather they have weight or importance
(Dworkin 1977, 26). They can also conflict with one another and
need to be balanced. Rules, on the other hand, apply in an all or nothing
fashion. They are not weighed against one another and do necessitate action
(Dworkin 1977, 26-27). In United States law, for example, the First Amendment
Free Exercise Clause that guarantees the right to religious freedom is a
principle that sometimes conflicts with the First Amendment Establishment
Clause that prohibits the state from adopting an official religion. On the
other hand the Equal Employment Opportunity regulation that prohibits asking
job applicants their religion is a rule that simply applies and is not balanced
against other rules. Stating human rights in terms of principles rather than
rules accounts for the way in which they can conflict and need to be weighed
against one another. Stating human rights in terms of principles also provides
the flexibility to allow human rights to apply cross-culturally while
respecting the traditions of different cultures.
In addition, the broad scope of human
rights requires that human rights treaties be stated in terms of provisions
that will not become outdated with the advance of science. The principles that
constitute human rights treaties should not be stated in terms of specific
forms of technology or on the basis of current scientific assumptions that
might change. Just as scientific theory will change over time in light of
continuing research, cultural attitudes will also change over time. Activities
that people find repulsive at one time may come to be accepted at another time
and vice-versa. A case in point is in vitro fertilization (IVF). As Stephen P.
Marks notes, when the techniques of IVF were first developed many felt
revulsion and spoke of “test tube babies” (Marks 2002, 122-123). At the present
time, IVF is widely accepted both emotionally and morally. Human rights
treaties subject to the viscissitudes of advancing science and changing
cultural norms cannot effectively apply human rights to future generations.
At the same time that human rights
treaties need to be stated in language that is sufficiently general to be
broadly applicable, the language must also be sufficient clear that it provides
guidance. The trick is designing human rights documents that are flexible
enough to be open to a range of interpretations while still being specific
enough to capture the principles that constitute human rights.
The weight of human rights also needs to
be considered. Human rights treaties are the heavy weapons of regulation. They
not only apply transnationally and crossculturally, but also carry tremendous
moral and legal force. They provide reasons for condemning national policy and,
in extreme cases, for infringing on national sovereignty. Some have argued that
governments that violate human rights are to that extent not even legitimate
governments (Buchanan 1999, 52-56). Human rights, like other rights, are moral
trumps that have the power to defeat policy justifications based on welfare
considerations (Dworkin 1977, xi). As
Mary Ann Glendon has noted, rights are not open to easy negotiation and compromise
(Glendon 1991). Hence, issues that require negotiation and compromise should
not be framed in terms of human rights. It should also be noted that the force
of human rights is diluted as its rhetoric is expanded to cover more and more
territory. Like all heavy weapons, human rights rhetoric needs to be used
sparingly.
It turns out, in light of these
considerations, that prohibitions on genetic engineering should not be regarded
in themelves as human rights. Nor should they be derived from more general
human rights of genetic integrity or dignity.
Human
Rights and Prohibitions on Genetic Engineering
It is certainly true that germ-line
genetic engineering, reproductive cloning, and genetic engineering for purposes
of enhancement pose dangers that make them unjustified at the present time. On
the other hand, the time may come when genetic engineering can safely be used
to prevent diseases such as Tay Sachs or Huntington’s. If human rights are used
to prohibit germ-line engineering in such cases, serious problems regarding
their weight arise. Suppose that germ-line engineering is prohibited because
there is a human right not to be subjected to such engineering. In cases such
as Tay Sachs Disease, this would be a right that no reasonable person would
want to claim or have exercised on his or her behalf. In order to avoid such
absurdity, the right would have to be regarded as weak and capable of being
overridden or specific exceptions would have to be carved out from time to time
as science advances. Either way, treating human rights as having so little
force would seriously undermine the importance of human rights treaties.
Similar considerations may also arise
regarding genetic enhancements. While present attempts to genetically enhance
people are no doubt too dangerous to allow, there may come a time when such
enhancements could be done safely in a manner that would not be objectionable
to those who are enhanced. A slightly enhanced immune system might be an
example.
In short, creating blanket prohibitions
of germ-line genetic engineering on the grounds that there is a human right not
to be subjected to such engineering produces a dilemma. If the rights are
treated as genuine human rights, the rights trump consequentialist
considerations based on beneficial therapies that might be developed, and this
has absurd results. If, however, the rights are treated as weak and capable of
being overrident by such consequentialist considerations, then they do not
function as rights at all. In this way creating a human rights treaty to
broadly prohibit germ-line engineering or enhancement engineering actually
serves to weaken human rights.
The issue of genetic enhancement raises
additional concerns regarding the use of human rights. Here the problems
primarily concern the scope of human rights. If there is a human right not to
be genetically enhanced, then the right must apply to humans generally. It must
apply in the present and the future as well as in all cultures. The problem is
that what counts as an enhancement will vary depending on various cultural and
technological considerations. This can be seen by taking a closer look at the
therapy-enhancement distinction. Pehaps the easiest way to understand this is
to see it as based on the distinction between maladies (diseases, disabilities
and disorders) and normal functioning. Just what falls on either side of the
distinction can vary depending on the structure of society, since what counts
as a disability often depends on how society is set up. Alan Buchanan et al.
argue that different societies have different dominant cooperative frameworks
(Buchanan 2000, 79). A dominant cooperative framework sets the conditions that
must be met for one to be able to compete for positions in that society and to
function well as a member of the society. What counts as a disability within a
society will, in many cases, depend on the dominant cooperative framework
adopted by the society. For example, attention-deficit hyperactivity disorder
(ADHD) may be regarding as normal functioning in a society wealthy enough to accommodate
the behavior in its education system, but a disability in a society unable to
adjust to the behavior associated with ADHD. In addition, what counts as a
disability in a particular society may change over time, as the dominant
cooperative framework evolves. A society may develop genetic techniques to deal
with a disability, given its current dominant cooperative framework, and then
have the disability become part of normal functioning later as the dominant
cooperative framework changes.
Such considerations have troubling
implications for human rights treaties that allow genetic engineering for
purposes of therapy, but not enhancement. Genetic techniques that are
prohibited as enhancements in one society may be permitted as treatments in
another society. Moreover, what is permitted or prohibited will change from
time to time within a society. The use of human rights in this context appears
to be arbitrary. It is difficult to see how treating such specific prohibitions
as human rights could have the universality and clout that human rights are
supposed to confer if their application was contingent on changes in the
dominant cooperative framework.
Human
Rights to Dignity and Genetic Identity
It might be argued that this apparent
arbitrariness is really only apparent because there is a more general human
right that can be used to explain why these changes are legitimate
interpretations of an underlying principle. But what could the underlying right
be? I begin with the putative general right to one’s genetic identity. A right
to one’s genetic identity makes sense when interpreted as a right to genetic
privacy. One has a right to keep one’s genetic information confidential within
certain limits. On the other hand, it is not coherent when interpreted to prevent
germ-line engineering. If one interprets genetic identity so rigorously that
any change in one’s genetic structure is a change in one’s identity, then
beneficial therapies are ruled out with absurd results, as previously noted.
If, however, genetic identity is construed so that there is a core genetic
identity, a sort of essence of the individual, then germ-line engineering may
be able to proceed without affecting that identity. Germ-line engineering that
prevents a disease, for example, does not threaten the identity of the
individual because having a particular disease need not be part of the
individual’s identity. This is part of the reason we want to speak, for
example, of a person living with HIV-AIDS, rather than speaking of an
HIV-infected person. In short, the right to one’s genetic identity, if it
exists, does not justify a blanket prohibition on germ-line genetic engineering
or genetic enhancement. Nor can it be used as a general principle to justify
suppressing what counts or does not count as enhancement within the changing
landscape of dominant cooperative frameworks.
It should also be pointed out that while
issues of individual identity and authenticity are important, individual
identity should not be reduced to genetic identity (Rovane 2002). It is not
clear why having a unique genetic identity should be regarded as sufficiently
important to spawn a human right. After all, as is often noted, identical twins
are not harmed merely by the fact that they are identical twins (Häyry 2004,
10).
Similar arguments can be constructed
regarding the human right to dignity. If dignity requires respect for a core
set of personal traits, then genetic engineering that does not undermine those
traits is not prohibited. This can include germ-line genetic engineering and
even genetic engineering for purposes of enhancement. If, on the other hand, it
simply means that the human genome is inviolable, then obviously beneficial
therapies are ruled out.
Regarding prohibitions on germ-line
engineering and genetic enhancements as human rights generally lacks
theoretical appeal. Human rights ought to serve as justifications for the
statutes and regulations they spawn. In this respect, prohibitions on germ-line
genetic engineering and genetic enhancement look a lot more like regulations
that follow from human rights than human rights themselves. Background
justifications in terms of human dignity or human genetic identity also fail to
provide the needed justification.
Cloning
These arguments also undercut some of the
most prominent reasons given for supposing that reproductive cloning should be
viewed as a violation of a human right. It is sometimes argued, correctly at
the present time, that reproductive cloning is simply too dangerous to
tolerate. It is also sometimes argued that reproductive cloning is repugnant
and that we should pay attention to our feelings of repugnance (Kass 1998 and
Midgley 2000). Along the same lines, it is sometimes argued that reproductive
cloning would violate cultural understandings such as assumptions about family
relationships and expectations. If a human right prohibiting cloning is
grounded in current values or concerns about dangers, then there may come a
time in the future when these conditions change. Similarly, if the human right is
grounded on current cultural understandings, then there may come a time when
these change. In either case, the basis of the putative human right is
undermined or at least needs to be overridden.
Some have also argued that reporductive
cloning is a violation of a more general human right to genetic identity or
dignity. This is clearly the position, for example, of Council of Europe and
UNESCO. But, it was argued in the previous section that this will not work.
Moreover, as is frequently pointed out, identical twins clearly have human
dignity, notwithstanding their genetic identity (Häyry 2004, 10).
Conclusion
There is no doubt that germ-line and
non-therapeutic genetic engineering including reproductive cloning pose risks.
They pose risks of adverse effects, and they can be used for immoral purposes.
Regulations are in order. In many cases, the regulations should take the form
of national statutes. This is especially true when the distinction between
therapy and enhancement is at issue. Individual nations have the ability to
craft statutes that reflect the subtlety of current local conditions. Such
regulations can be passed, amended or repealed as the changing situation
warrants. Treating human rights in this way would weaken them by reducing them
to the status of mere regulations. In other cases, international treaties may
be appropriate. This is especially true
in cases where science has not progressed to the point where genetic
engineering can be carried out with reasonable safety. But, the treaties should
not be stated in terms of human rights.
Rather they should be treaties that can be amended as needed and formed
on the basis of compromise without the heavy hand of human rights.
We are at the beginning of the science of
genetic engineering. It is not clear what advances will be made in the science,
and it is not clear how the culture will change in light of those advances. The
potential for benefit as well as harm, along with our current profound
ignorance, counsels in favor of taking small regulatory steps rather than
sweeping prohibitions based on human rights.
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