GENETICS
AND HUMAN RIGHTS
Durban,
(South Africa), September 3 (No 2001-90)
- The rapid progress in
genetics is raising new ethical questions: Shouldpeople be allowed to
“design” their children? Should parents or society be allowed to decide
whether or not human embryos should survive on the basis of their expected
physical appearance or talents? Should employers or insurance companies be privy
to the genotype of their would-be employees or clients before entering into a
contractual relationship with them?
Could the ability to identify characteristic gene sequences in
populations living in a given geographic area lead to new forms of racial or
ethnic discrimination?
These are some of the questions that will be raised in the course of a
UNESCO-organized debate, The
New Aspects of Racism in the Era of Globalization and the Gene Revolution, at
the World Conference Against Racism and Xenophobia in Durban, South
Africa.1
While genetic research is improving our ability to fight disease, genetic
technology is paving the way for new forms of procreation that would give
parents and scientists an unprecedented level of control over the destiny of
children. Theoretically, it is also making it possible for society to consider
“grading” its members on the basis of the “quality” of their genetic
makeup.
Several countries, including France, Germany and, most recently, the
United States, have banned human cloning - a practice already condemned by
UNESCO's 1997 Universal Declaration on the Human Genome and Human Rights,2
the first international normative instrument designed to ensure that advances in
genetics do not encroach on human dignity and human rights. But some countries
are reluctant to take such measures and a number of scientists have made
newspaper headlines as they declared their determination to carry out
reproductive human cloning, opening up the way to new forms of eugenics.
To what extent will cloned children be able to free themselves from the
expectations of overbearing, narcissistic parents determined to duplicate
themselves in their offspring?
Are wealthy individuals to be given the freedom to choose a “designer
child” that will be sure to inherit the talents of a particularly gifted
cell-donor (or, more likely, seller)? Should the rich be allowed to “design”
their children, while the rest are condemned to make do with the traditional
luck of the draw of natural procreation?
No easier is the question of determining whether to allow experiments on
cloned human embryos. Producing human embryos in order to obtain stem cells,
cells that could be introduced into a damaged organ and repair it, involves
medical risk, as suggested by the high incidence of genetic disorders in cloned
animals. There is also controversy about permitting human cloning for research
as this practice entails the destruction of human embryos once they have served
their research or therapeutic purposes.
Furthermore,
it will be difficult to enforce a ban on reproductive cloning, if therapeutic
cloning is allowed. It will then be almost impossible to ensure that none of the
cloned embryos produced for therapeutic purposes are implanted in the uterus of
a surrogate mother who would give birth to a human clone.
New forms of discrimination might also emerge as our ever-growing grasp
of the human genotype enables society to identify individuals likely to suffer
from life-threatening or crippling diseases such as cancer, Parkinson or
Alzheimer. Should such individuals be made to pay more for medical insurance?
If
research reveals that homosexuality is genetically determined, should parents or
society be allowed to eliminate homosexual foetuses?
New ethical issues are also raised by progress in predictive medicine
which enables physicians to identify genetic diseases for which there is no
treatment at all, such as Huntington disease (which manifests itself in
adulthood through the progressive destruction of the nervous system) well before
the first symptoms appear. Should such diagnoses be given to asymptomatic
patients and their families?
While genetic engineering opens the way to abuses and new forms of
discrimination, its positive potential cannot, and should not, be disregarded.
Gene therapy is widely expected to provide efficient treatment for inherited
diseases such as cystic fibrosis for which there is no other treatment in sight.
The medical community is unanimous in believing that gene therapy holds
tremendous promise for the treatment of inherited diseases first, but ultimately
for innumerable health problems.
Since 1993, UNESCO’s International Bioethics Committee (IBC), composed
of 36 independent experts, has been investigating these and similar questions.
The Committee reflects on the ethical and legal issues raised by research in the
life sciences and works with UNESCO’s Division of Human Sciences, Philosophy
and the Ethics of Science and Technology. The Committee prepared the Universal
Declaration on the Human Genome and Human Rights that was adopted by all of
UNESCO’s Member States and the United Nations General Assembly endorsed the
Declaration in 1998.
The Declaration sets universal ethical standards on human genetic
research and practices, balancing the freedom of scientists to pursue their work
with the need to safeguard human rights and prevent abuse. Three basic
principles underpin the Declaration: that the human genome is part of the
heritage of humanity; that the dignity and human rights of every individual
should be respected, regardless of his or her genetic characteristics; and that
genetic determinism should be rejected, recognizing that the genome, being
subject to mutations through evolution, contains “potentialities that are
expressed differently according to each individual’s natural and social
environment.”
The
Declaration also enshrines the principles of confidentiality of genetic
information associated with identifiable persons and the right to “just
reparation” for damage sustained as a direct result of intervention affecting
an individual's genome.
The Declaration, is, however, not legally binding and each state remains free to introduce its principles into national legislation as it
sees fit. In 1999, UNESCO’s General Conference adopted guidelines for the
implementation of the Declaration, suggesting measures - including legislative
steps, the establishment of national bioethics committees, and media campaigns -
that could help render the principles spelled out in the Declaration a reality.
Participants at UNESCO’s panel on The
New Aspects of Racism in the Era of Globalization and the Gene Revolution
will be: Nadine Gordimer (South Africa), l991 Nobel Prize for Literature; George
J. Annas, Professor of Health Law at the Boston School of Public Health (USA);
Axel Kahn (France), Geneticist, Director-General of the Paris-based Cochin
Institute for Molecular Genetics; Achille Mbembe (Cameroon), Professor at the
Institute of Social and Economic Research at the University of Witwatersrand
(South Africa); Elikia M’Bokolo (Democratic Republic of Congo), Historian and
Director of Research at the Ecole des Hautes Etudes en Sciences Sociales
(France).
During the World Conference against Racism and Xenophobia, UNESCO will
organize two other roundtables:
The Slave Route: Slavery and Racism,3 will examine the
consequences of the slave trade while Racism
and the Role of the Media,4
co-organized with the Office of the United Nations High Commissioner for Human
Rights, will turn
to the role of the media in fighting racism. UNESCO is also organizing an
exhibition in Durban featuring material illustrating its long-standing struggle
against racism and discrimination.
****
For
more information: UNESCO Press Service: (+33
1) 45 68 17 44
During
the World Conference in Durban: Roni Amelan 082 858 8832
1
September 3, 10 a.m. to noon, International Conference Centre, Room 3
2 For the full text
of the Declaration: http://www.unesco.org/human_rights/hrbc.htm
3
September 4, 4 p.m. to 6 p.m., Room 7
4
September 5, 1.30 p.m. to 4 p.m,. Room 3
