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terça-feira, fevereiro 06, 2007

Genism, Racism, and the Prospect of Genetic Genocide

Genism, Racism, and the Prospect of Genetic Genocide

George J. Annas, JD, MPH,
Professor and Chair, Department of Health Law, Bioethics & Human Rights, Boston University School of Public Health

I greatly appreciate the opportunity to speak to you on the topic of "Genism, Racism, and the Prospect of Genetic Genocide" in conjunction with the World Conference against Racism. I think there is little doubt that the 21st century will be the century of human genetics. New genetic technologies have the potential not only to change what we can do to ourselves and each other, but more importantly, to change the very way we see ourselves and each other.

Our superficial perceptions of each other have often fostered racism in the past. Simply defined, racism is "the theory that distinctive human characteristics and abilities are determined by race." The hunt for genes, especially in groups identified by racial classifications, could lead to "genism" (a term not yet officially recognized, but one I would define as the theory that distinctive human characteristics and abililites are determined by genes) based on DNA sequence characteristics with resulting discrimination as pernicious as racism.

A second consequence of the new genetics will be a temptation to use our new powers to transform ourselves by attempting to create a "better baby" or even whole new categories of posthumans, eventualities warned of in Huxley�s Brave New World. Huxley�s world relied on conditioning to enable the enslavement of categorically "inferior" humans by their genetic "superiors." A more likely outcome is genetic genocide: the elimination of the new human by the old, or vice-versa. Let me briefly explain each of these dangers and suggest ways we might avoid them.

Genetic Universality or Genism?

The great hope of genomics is that it will scientifically demonstrate that humans are all essentially the same, and that this demonstration will lead us to exchange our penchant for making distinctions among humans for a view that all humans are essentially the same. And genomics has already accomplished the science part.

After the draft of the human genome was announced last summer, for example, Chris Stinger of London�s Natural History Museum observed, "We are all Africans under the skin." The same point was made by other geneticists in different words, one noting that "race is only skin deep" and another, that "there is nothing scientific about race: no genes of any sort pattern along racial lines." Craig Venter, the leader of the private genome mapping effort, concluded:

Race is a social concept, not a scientific one. We all evolved in the last 100,000 years from the same small number of tribes that migrated out of Africa and colonized the world.

This is all to the good, and geneticists deserve praise for getting this antiracism message out to the public. Unfortunately, the message of genetics, while undercutting racism can simultaneously invigorate its evil brother, genism. This is how it works. Eric Lander, the genomics leader from the Massachusetts Institute of Technology has noted that although we are all 99.9% genetically identical, that .1% of difference is made up of 3 million spelling variations in our genomes. Each of these genetic variations could be used as a pseudoscientific basis for discrimination based on genetic endowment. Genome leaders have recognized this, and have called for legislation to prohibit genetic discrimination in employment, health insurance, life insurance, and disability insurance. These are not the only arenas of discrimination that should concern us. Most important are the ways in which knowledge of our genomes will affect how we view our own life�s possibilities, and even how our friends and families view us. The geneticists have said that understanding the genomic code will enable us to understand life at the molecular level. But we do not live life on the molecular (or atomic or subatomic) level, but as full-bodied human beings. It is this reductionistic view of humans as a collection of genes that is at the core of genism.

An example is provided by the now defunct "Human Genome Diversity Project" which sought to collect DNA samples form some 700 of the world�s isolated ethnic groups, sometimes referred to as the world�s "vanishing tribes." In the project�s view, it was more important that science seize the opportunity to collect DNA from these peoples than that any action be taken to actually help the peoples themselves. The indigenous peoples around the world properly and forcefully rejected this project, and insisted that their human rights be placed above this dubious and reductionistic project.

It is true that "we are all Africans under the skin." It is also true, however, that if we decide to search for genetic differences in the .1% of our DNA that is different, we will find them and use them against each other. Philosopher Eric Juengst put it well:

No matter how great the potential of population genomics to show our interconnections, if it begins by describing our differences it will inevitably produce scientific wedges to hammer into the social cracks that already divide us.

Preventing genism from taking over where racism left off by substituting molecular differences for skin color differences will not be easy. Two actions, however, seem necessary. First, genetic privacy must be protected. No ones genes should be analyzed without express authorization, and, of course, no "genetic identity cards" should be permitted. Second, pseudoscientific projects that purport to identify genetic differences between "races" should be rejected.

The Prospect of Genetic Genocide

Screening genomes to detect differences creates more opportunities for discrimination. Using the new genetics to try to make a "better human" by genetic engineering goes beyond discrimination to elimination by raising the prospect of genetic genocide. Is this inflammatory language justified?

The project of genetic engineering will begin with the genetic replication of humans by somatic cell nuclear transfer, known simply as cloning. Cloning to create a child who is a genetic replica of an existing human makes a mockery of human dignity both by undermining the individuality and liberty of the clone child, and by turning the child into a product of our own will and technique. The immediate danger, of course, is that as products, the human rights of the clone children will be suspect, and as copies of originals they will inevitably be treated (and treat themselves) as second class citizens.

Cloning, however, is only the beginning of the genetic engineering project. The next steps involve attempts to "cure" or "prevent" genetic diseases, and then to "improve" or "enhance" genetic characteristics to create the superhuman or posthuman.

It is this project that creates the prospect of genetic genocide as its most likely conclusion. This is because, given the history of humankind, it is extremely unlikely that we will see the posthumans as equal in rights and dignity to us, or that they will see us as equals. Instead, it is most likely either that we will see them as a threat to us, and thus seek to imprison or simply kill them before they kill us. Alternatively, the posthuman will come to see us (the garden variety human) as an inferior subspecies without human rights to be enslaved or slaughtered preemptively.

It is this potential for genocide based on genetic difference, that I have termed "genetic genocide," that makes species-altering genetic engineering a potential weapon of mass destruction, and makes the unaccountable genetic engineer a potential bioterrorist. This may seem overblown, but as a recent analysis of the failure of the United States to take action to prevent the genocide in Rwanda concludes, failure to act need not be based on failure to understand the facts: "Any failure to fully appreciate the genocide stemmed from political, moral, and imaginative weaknesses, not information ones." The hopeful aspect of the new genetics is that it can lead us to see our species in new and deeper ways, and help us to form what Vaclav Havel has termed our "species consciousness." A species-level consciousness will help us to imagine the likely consequences of our genetic science and to take effective steps to try to prevent predictable disasters.

What should be done?

Bioethics has been called on to save us from the potential harms of the new genetics, but with its focus on individual decisions made in the context of the doctor-patient relationship, it cannot help us confront species-wide issues. Although bioethics can help, a much more potentially effective framework is the language and practice of international human rights. My own view is that the threat by cults and others operating on the margins of human society to clone a human being creates an opportunity for the world to act preventively in ways that have been either extremely difficult or impossible.

Specifically, I believe it is now reasonable and responsible to suggest that UNESCO�s Universal Declaration on the Human Genome and Human Rights, and the overwhelming repulsion of peoples and governments around the world to the plan to clone humans, can be followed by a formal treaty on The Preservation of the Human Species. This treaty should ban both species-altering techniques and species-endangering experiments. Specifically, techniques that propose to alter a fundamental beneficial characteristic of being human should be banned. (The alteration could be accomplished either by making the characteristic optional, such as by making sexual reproduction optional by adding cloning�asexual replication�to the ways humans could have children, or by altering the genetic code of an embryo in a way that the resulting child would be seen as a member of a human subspecies or of a new species. Species-endangering experiments are those that would put the entire species at risk, such as current proposals to use pig organs for xenografts that risk the creation of a new lethal human virus that could be similar to HIV).

This treaty should also contain a democratic and accountable enforcement mechanism through a monitoring and review body. No experiments in the species-altering or species-endangering categories would be legal without this body�s prior review and approval. By shifting the burden of proof to scientists and corporations to demonstrate that their interventions would more likely be beneficial than harmful to the species, the treaty would adopt the environmental movement�s precautionary principle to species-altering and species-endangering interventions.

We have a tendency to simply let science take us wherever it will. But science has become so powerful, both in terms of making our lives better and raising the risk of species suicide, that we can no longer abdicate our mutual responsibility to each other as members of the human species.

Conclusion

In her disturbing and evocative novel of postapartheid South Africa, The House Gun, Nadine Gordimer writes of Harold and Claudia Lindgard (the parents of a young man who has killed his friend):

The Lindgards were not racist, if racist means having revulsion against skin of a different color, believing or wanting to believe that anyone who is not your own color or religion or nationality is intellectually and morally inferior. Claudia [a physician] surely had her proof that flesh, blood and suffering are the same, under the skin. Harold surely had his proof in his faith that all humans are God�s creatures in Christ�s image, none above the other. Yet neither had joined movements, protested, marched in open display, spoken out in defense of these convictions. They thought of themselves as simply not that kind of person; as if it were a matter of immutable determination, such as one�s blood group, and not failed courage.

It took direct action to overcome apartheid. Although the Lindgards seemed to believe in behavioral genetic determinism, there is no gene (or blood characteristic) that codes for or excuses inaction in the face of actual or threatening human rights abuses. Inaction is the face of genism is not an option. We must work together to promote genetic privacy, prevent the cloning and genetic engineering of humans, and promote and protect universal human rights based on dignity and equality.

Without action on the species level genism will eclipse racism as the most destructive disease on the planet. We are all Africans. We are all humans.


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Prepared for presentation at UNESCO 21st Century Talks: The New Aspects of Racism in the Age of Globalization and the Gene Revolution at the World Conference against Racism, Racial Discrimination, Xenophobia and Related Intolerance, Durban, South Africa, September 3, 2001


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Copyright 2001 by George J. Annas
Copyright � 2001 by The Health Law Department of the Boston University. All rights reserved