[Full written testimony, including tables and footnotes, is available as PDF]
Mr. Chairman and members of the Committee:
I am Richard Hayes, executive director of the Center for Genetics and Society, a public affairs institute supporting responsible governance of new human biotechnologies. We work at state, national and international levels with scholars, scientists and legal experts and with leaders in human and civil rights, women's health, social and economic justice and the environment. Thank you for inviting my testimony.
I've been asked to address the question, "Is there an emerging international consensus on the proper uses of the new human genetic technologies?" While countries differ widely in the policies they have adopted, I believe that in regard to the most consequential of these technologies, the answer is "Yes."
The new human biotechnologies have the potential for both great good and great harm. If used responsibly they could lead to medical advances and improved health outcomes. If misapplied they could exacerbate existing disparities and create new forms of discrimination and inequality. They could open the door to new eugenic practices and ideologies that would undermine the foundations of civil society and indeed our common humanity. In combination with emerging technologies such as nanotechnology, neurotechnology and synthetic biology, they could put agents of unprecedented lethal force in the hands of both state and non-state actors.
CGS has surveyed human biotechnology policies throughout the world, including all 192 countries, as well as binding conventions and declarations produced by the United Nations, the European Union, UNESCO, the World Anti-Sports Doping Agency, the Council of Europe, the African Union, the World Health Organization and the Group of Eight.
I believe this review supports the following general conclusions:
First, there is widespread support for stem cell research involving embryos created but not used in the course of assisted reproduction procedures. There is similar widespread support for the use of genetic screening techniques to avoid passing serious diseases to one's offspring.
Second, there is widespread support for prohibitions on reproductive cloning, inheritable genetic modification, and genetic screening for non-medical purposes.
Third, there appears to be widespread concern about the use of genetic technologies for so-called "enhancement" purposes; about the commercialization of human reproductive activities; and about international trafficking in human genetic materials.
Fourth, policies differ concerning the creation of clonal human embryos for research. Most countries that have adopted positions on this practice have opposed it, but a significant number support it.
It's instructive to note that of the thirty OECD member countries - which together account for 84% of world GDP and have the most fully developed biotech research sectors - 97% have banned reproductive cloning, 83% have banned inheritable genetic modification and 77% have banned genetic screening for non-medical purposes. None have approved these. And those few OECD countries that don't yet have formal policies appear likely to oppose these practices.
This record is encouraging, but it's important to note that the majority of countries world-wide have not yet adopted any policies on these technologies. This policy deficit is an open invitation to rogue scientists and delusional demagogues. If the emerging policy consensus is to be meaningful, all countries will need to be part of it in one manner or another. And we will need treaties, conventions and other agreements to seal this deal.
In my submitted testimony I note proposals modeled on the 1997 Landmine Treaty, Jamie Metzl's proposal for a "Genetic Heritage Safeguard Treaty," the 2002 proposal by noted legal scholars for a "Convention on the Preservation of the Human Species," and other proposals. A productive next step might be to commission a high-level task force, representing the full range of concerned constituencies, to undertake a comprehensive assessment of these and other options for global oversight.
Development and enforcement of such global agreements will not be easy. The boundaries between acceptable and unacceptable uses are often unclear, and people are understandably reluctant to forego prospective benefits without good reason. In a world still afflicted with racial, cultural and nationalist conflict, some will want to use these technologies for aggressive purposes. These challenges are serious, but if we can mobilize the needed social and political will there is no reason they cannot be met.
In my remaining minutes I want to mention what I believe may be the single greatest obstacle to mobilizing the social and political will we need.
In many countries the debate over policies addressing human genetic technology has become enmeshed in the politics of the culture wars. In the United States the result has been a stalemate and a policy vacuum at the federal level and hastily conceived programs at the state level. At the international level the result has been stalemate and avoidance.
Opinion surveys, however, show broad support for a principled middle-ground position concerning these technologies. The majority of people - in America and in much of the rest of the world - do not necessarily oppose medical research involving human embryos, but they strongly reject reproductive cloning and the engineering or selecting of the social traits of future generations.
The issues raised by the new human genetic technologies transcend conventional ideological divides. Many women's health advocates oppose such technologies that put women's health at risk and commodify reproduction. Human and civil rights leaders are wary of a new free-market eugenics that could stoke the fires of racial and ethnic hatred. Disability rights activists charge that a society obsessed with genetic perfection could come to regard the disabled as "mistakes" whose existence should have been prevented. Many environmentalists see human genetic modification as another hubristic technology being promoted with little regard for long-range consequences.
Similarly, it is misleading to try to categorize countries as either "liberal" or "conservative" based on their positions on human genetic technology. Western European countries widely regarded as bastions of secular liberalism have adopted some of the strictest regulations over human genetic technology in the world. This derives from their generally social democratic political culture, and from their first-hand experience in the 20th century with eugenics, euthanasia and the Holocaust. Europeans know all too well what can happen when ideologies and policies that valorize the creation of "genetically superior" human beings come to the fore. For different but related reasons, developing countries such as South Africa, Vietnam, India, and Brazil have likewise adopted strong policies of social oversight and control.
Despite many statements to the contrary, the genie is not out of the bottle. I sincerely believe we have the time and the capability to get ahead of the curve and do the right thing. But it will require enlightened, committed, bipartisan leadership at the national and international levels, and soon. Thank you.