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Inequality, Democracy and the New Human Biotechnologies

by Richard Hayes
July 15th, 2004

Presentation at Inequality, Democracy and the New Human Biotechnologies: A Threshold Challenge for the 21st Century, New York, NY [PDF Version]

The new technologies of human genetic modification are among the two or three most profoundly consequential technologies of the 21st century. They have the potential for both great good and great harm. They are being developed at an extraordinary pace. There is little public oversight and control of their development and use.

If these technologies are developed and used in the prevailing context of free-market competition and individualist social values, they could greatly exacerbate existing inequalities in health and social power, and existing modes of discrimination and exploitation. In addition, certain applications of these technologies could open the door to a new high-tech eugenics that would undermine the foundations of democratic civil society.

The dynamics of inequality, democracy and the new human biotechnologies works the other way as well: at this moment, inequalities of power and influence are themselves subverting democratic decision-making concerning the development and use of the new human biotechnologies. Surveys show that Americans are more uneasy about human biotechnologies than they are about any other set of new technologies, yet they feel unprepared to express clear opinions and feel intimidated by experts. Meanwhile, few civil society constituencies have identified the new human biotechnologies as issues of priority concern. In the face of uncertainty among the public and the absence of organizations that inform and mobilize public opinion, the biotech industry and the bioscience research community are moving to frame the public debate on their own terms and to secure the commanding heights of the policy-making process.

I don't want to suggest that we should simplistically "oppose biotechnology." That's like saying we should oppose penicillin and yogurt. These technologies have benign and beneficent applications as well as dangerous ones. But it's equally wrong to hold biotechnology out as the Holy Grail, and to propose that voicing concern about its social consequence is akin to the Pope seeking to silence Galileo.

Rather, we need to summon our collective wisdom, maturity and will to devise a nuanced set of responsible policies. Some human biotechnologies will likely be judged to be unproblematically beneficial, and should be affirmatively supported. Others pose both benefits and risks - we won't want to ban them, but we'll want to proceed very cautiously and make sure they are carefully regulated. And some, hopefully few, may be judged to pose such great risks, or be so clearly unacceptable, that they will need to be proscribed.

The important point to realize is that at the present time, in most countries and internationally, the institutions that would allow such policies to be made and enforced simply do not exist.

What technologies am I talking about, and what do risks they pose?

Genetic testing and screening, both pre-natally and in combination with IVF procedures, threatens new forms of discrimination and stigmatization. Sex selection is dramatically reducing the ratio of female to male infants born in developing countries, and may change birth order patterns in the developed countries. Patenting of human gene sequences represents a new enclosure of a long-accepted commons. The push by the international biotechnology community to promote genetic technologies as the solution to health needs in developing countries threatens to redirect resources from providing basic health care and addressing the social determinants of health. Patenting of human embryos and the intentional conception and birth of children for the primary purpose of supplying medically useful tissues, sets us on a course towards the commodification of human beings. Techniques to allow cloning for research are being developed without safeguards to prevent their use to create cloned children. "Gene-doping" is widely expected to be developed and used by athletes within the next several years, regardless of entreaties or sanctions. Biochemical, pharmacological and surgical "enhancements" are rapidly becoming normalized within elite social, cultural, and professional circles. Techniques allowing the creation of genetically modified children could spark a techno-eugenic rat race in which all would feel compelled to compete lest they leave their children at a disadvantage.

If we are to ensure that the development of the new human biotechnologies supports rather than subverts social justice, equality and democracy, we need to affirm at least three principles and the institutions they imply: first, that benign and beneficent technologies must be available to all; second, that the precautionary principle should be applied when assessing new human biotechnologies; and third, that final decisions over the development and use of new human biotechnologies should be make by democratically accountable structures.

Skeptics may call these proposals utopian but that view is refuted by an existence proof: Canada. Canada has a national health program that ensures access to, among other things, pre-natal and other genetic services approved for use. Landmark federal legislation passed earlier this year by the Canadian Parliament requires private firms and research institutions engaged in any activities involving human eggs, sperm or embryos to obtain a license ensuring that they operate in accordance with approved policies. The law gives the green light to embryonic stem cell research but imposes strict controls to ensure careful monitoring. The law further establishes a new oversight agency, appointed by the federal cabinet, to review and approve proposals for controversial new genetic technologies. Finally, Canada bans the patenting of human genetic sequences, embryos and gametes. It's important to note that Canadian pro-choice and women's health groups were closely involved in the drafting of the bill, and that these same groups played a lead role in campaigning for its passage.

Similar policies exist in most of Europe, in Australia and elsewhere. Real-world models exist. There is no excuse - by the United States or by any other country lacking responsible policies - for complacency.

Still, the task we face will be anything but easy. Major social, cultural and political challenges need to be overcome. We are in a race for time and the stakes are enormous.

A major challenge is posed by the fact that opinions and intuitive reactions concerning the new human biotechnologies don't fall easily along the conventional left-right ideological spectrum. Religious conservatives were the first to become vocal on high-profile issues such as human cloning, and the popular press quickly framed debate over the new human genetic technologies using the conventional categories of abortion politics. This is seriously misleading. Many pro-choice feminists and women's health advocates oppose new genetic and reproductive technologies that put corporate profits over women's health and well-being. Feminists additionally raise concern about the commodification of reproduction and human relationships. Disability rights leaders charge that a society obsessed with genetic perfection could come to regard the disabled as mistakes that should have been prevented. Civil rights and human rights leaders are wary of a new free-market eugenics that could stoke the fires of racial and ethnic hatred. Many environmentalists see human genetic modification as another potentially disruptive technology being approved before long-range consequences are considered. In 2001 the People's Health Assembly, representing hundreds of international health, development, human rights, indigenous rights and other organizations, issued a major declaration opposing the push by the global biotechnology industry to place human genomics at the center of the global health agenda.

It is true, however, and especially in the United States, that the most well-organized constituencies active on human biotechnology issues are, in fact, the biotechnology industry and the religious conservatives, and in this sense the polarized framing adopted by the press is accurate. The unfortunate consequence is that if these remain the only choices available, liberals and progressives will align with the biotech industry, and unwittingly find themselves supporting policies antithetical to some of the deepest values of social justice, equality and democracy, and to their own historical traditions.

It is imperative that a third voice enter the debate, one representing those not necessarily opposed to the new human genetic technologies in principle, but who are very concerned about their social, economic and political implications and who certainly don't want to see the genetic future of the human species determined by biotech industry obsessed with profits or celebrity scientists obsessed with fame or notoriety.

Technologically, socio-culturally and politically, we are on the verge of being pushed over a threshold, quite unawares, into a new epoch of high-tech eugenics. Proponents argue that the new eugenics will be the inevitable outcome of the free play of human desire, individual choice, market economics, and unfettered scientific research. They point to the rapidly growing use and acceptance of prozac, viagra, cosmetic surgery and athletic doping as harpingers of the far deeper transformation of human biology that we can expect once genetic modification becomes practical.

As they were in both the 19th and 20th centuries, eugenic technologies and sensibilities are being promoted most vigorously by leading figures in the scientific community. Nobel laureate James Watson has called for the elimination of "stupid people" and "ugly girls" through genetic modification and selection. Media-savvy University of Pennsylvania bioethicist Arthur Caplan argues that popular resistance to eugenics needs to be overcome if we are to improve the human condition. Princeton University bioethicist Peter Singer argues in favor of infanticide. His colleague Lee Silver speaks glowingly of a future in which humanity has engineered itself into genetic castes, the "GenRich" and the "Naturals." University of Alabama bioethicist Gregory Pence, asks, "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 to dog to the needs of a family?" The list goes on.

We cannot allow this neoliberal eugenics to take root and flourish. What happens to the social fabric when couples in the upper 5% of the income distribution begin availing themselves of these technologies, and make no apologies about the fact that yes, they intend to engineer their children to leave everyone else's children in the dust? What happens when countries less disinclined than the United States to authoritarianism announce a national drive to eliminate genetic deficiencies and create a genetically superior breed of human?

Humanity needs a crash course in the science and politics of the new human biotechnologies. We need to repudiate eugenic political ideologies and deepen our commitment to the human community as such and to the dignity of all people. We need to do this on a global scale and within less than a decade. Individual counties, regional bodies and the United Nations need to make these concerns priorities. National and international leaders in politics, the sciences and the arts need to declare that humanity is not going to let itself be split asunder by the new human biotechnologies.

None of this will happen unless people organize to make it happen. We need new programs within existing organizations, and we need new organizations, to put these issues on the public agenda in a compelling way. We need to foster new levels of awareness, commitment and engagement - in short, a new social movement - to ensure that the new human biotechnologies support rather than endanger equality, democracy and social justice. Such a movement will need to be of the same intensity, scope and scale as the great movements of the past century that struggled on behalf of working people, anti-colonialism, civil rights, peace and justice, women's equality, and the environment. The hour is late. There is no greater challenge.


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