|Take Back America 2006|
Presentation at Take Back America conference, Washington, DC
My remarks today are about progressive values and the politics of stem cell research, and I have some things to tell you that you may not expect.
We all know that the Bush limits on federal funding of embryonic stem cell research are another case of pandering to the religious right, and we look forward to those restrictions being lifted in a Senate vote soon. And we all hope that stem cell research results in new scientific understandings and new medical treatments.
But if our analysis and understanding were to stop there, we’d be overlooking a number of very important progressive values that we urgently need to bring to the politics of stem cell research. If we continue to let the Right frame stem cell research as simply a question about the moral status of embryos, if we buy into the black-and-white polarized politics that has too often characterized the stem cell debate, we’ll be selling ourselves and our values short, and missing important political opportunities.
My organization, the Center for Genetics and Society, is working to put progressive principles into the politics of stem cells and other human biotechnologies. I’d like to share with you what we’ve learned from our experience with the $3-billion California stem cell program that was set up in 2004, working with a growing network of women’s health groups, social justice, consumer protection, and good government groups, and with Democratic state legislators.
The bottom line is that we need to craft a pro-research stand that also highlights the need for consistent and enforceable regulation, the need for hope without hype, and the need to develop stem cell technologies according to principles of social justice. And we need to build these progressive values in to stem cell research from the very start.
In the next several minutes, I’m going to talk about four values that we should be putting front and center as scientists move forward with stem cell research. I invite you to join us in applying these values to the stem cell debate, and in shaping the next stage of stem cell and biotechnology politics.
Let me name these four values first, as a road map to where I’m going. I’ll be talking about developing a new approach to stem cell politics that emphasizes 1st) ensuring health equity; 2nd) safeguarding research subjects, starting with the women who will be asked to provide eggs for research; 3rd) establishing responsible and enforceable regulation at the federal level, and 4th) promoting biotechnologies for the public good, rather than for corporate interest.
Unfortunately, we’ve seen serious shortcomings in all these areas in the California stem cell program. And many of the shortcomings are being replicated in other parts of the country.
Let’s look at the first value, health equity. As progressives, we want any successfully developed stem cell treatments to be affordable and accessible to everyone. This goal needs to be included in specific provisions of stem cell research programs, especially those funded with public money.
We also want the research itself to be directed at treatments that are likely to be widely affordable. This is a point where some devils lurk in some technical details. Currently, embryonic stem cell lines are derived from embryos that were created but not used for fertility purposes. There are thousands of these in fertility clinics around the country.
Theoretically another way to derive stem cell lines – it hasn’t yet been done – is with the cloning technique known as somatic cell nuclear transfer or SCNT. Some people have promoted the cloning approach to stem cell research as the basis of individually tailored treatments – this is the claim about “personal repair kits” that you’ve probably heard.
Now SCNT may turn out to be useful as a research tool. But it’s important to recognize that the “personal repair kit” scenario is at best very remote, and will likely always be unrealistic.
That’s because medical treatments based on SCNT would be extraordinarily expensive. An article in the Proceedings of the National Academy of Sciences, for example, estimates a cost of $100,000 to $200,000 just for the preliminary costs of deriving a cell line for a single patient this way. So SCNT-based treatments, even if they turn out to be technically feasible, would almost certainly be a kind of “designer medicine,” out of reach except for the very wealthy. If they are developed, they would only exacerbate our already shameful health disparities.
So cloning research needs to be reframed as an investigative tool, not as a miracle cure. And we need to attend to other concerns that cloning research raises.
Safeguarding research subjects
That brings me to the second value: the importance of safeguarding research subjects. Cloning research requires large numbers of human eggs. But procuring eggs is an invasive and time-consuming process that puts women at risk of adverse reactions, some of which can be very serious.
Women who provide eggs for research will be the first guinea pigs of stem cell investigations, and they’ll be asked to take these risks long before there are any concrete prospects for treatments. In addition, unless we’re careful, the increased demand for eggs could create a market that disproportionately exploits economically vulnerable women.
Recently there’s been some real progress in developing guidelines that at least will minimize the risks to women who provide eggs for research. We’ve been working with key women’s health groups in California to develop these guidelines, and to have them enacted as state law. We need enforceable rules on eggs for research in other states too, and at the national level.
Establishing responsible and consistent regulation
That brings me to the third value that progressives need to promote as part of stem cell politics: responsible and enforceable regulation.
Right now we don’t have it. In the United States, there are only voluntary guidelines on stem cell research. Responsible and enforceable regulation is the only way we’re going to get health equity, the only way we’re going to safeguard research subjects and women who provide eggs. It’s also the only way to avoid damaging the research itself with disasters like the cloning scandal that erupted in Korea a few months ago.
In addition, we need regulation to prevent stem cell and cloning techniques from being used by rogue scientists who want to try their hand at creating cloned and genetically “enhanced” children. These “brave new world” scenarios are too close for comfort, and need to be taken seriously. But because of the political polarization that’s developed around human biotechnology, the United States hasn’t even managed to pass a law against reproductive human cloning, though the overwhelming majority of the public, scientists, and lawmakers want one.
The rest of the world is doing things very differently. Every country with a significant stem cell research effort has put in place laws against reproductive cloning and enforceable regulations on stem cell and SCNT research. More and more, countries are moving to the kind of comprehensive policies that are needed to ensure that human biotechnologies are developed in the public interest.
Promoting biotechnology in the public interest
The last principle to keep in mind: promoting biotechnology in the public interest. A huge challenge we face is that biomedical science is increasingly being developed in an intensely commercial environment.
Fifty years ago, Jonas Salk became famous for developing the polio vaccine that put an end to a horrible disease that caused enormous suffering. When news broke that the field trials of the vaccine had been successful, Salk was interviewed by Edward R. Murrow on “See It Now.” "Who owns the patent on this vaccine?" Murrow asked. Salk replied: "Well, the people, I would say. There is no patent. Could you patent the sun?"
That was then. But even 15 or 20 years ago, scientists were far less likely than they are today to be involved with private industry as consultants, stakeholders, founders. We’re now seeing the first generation of biomedical science that’s being developed by a cadre of researchers with anything like this level of direct interest in profit-making and corporate gain.
Most scientists remain ethical, responsible, and devoted to expanding knowledge and developing tools to benefit humanity. But in an age of corporate biotechnology, we need to confront conflicts of interest forthrightly, and develop ways to protect the public interest.
We can do all this. With a thoughtful and nuanced approach to stem cell politics, we can ensure health equity; we can safeguard research subjects and women who provide eggs for research; we can establish responsible regulation; and promote biotechnology in the public interest.
We can craft a new politics of human biotechnology, one that’s aligned with our core values and commitments, that will win broad support from Americans, and that will establish crucial precedents for socially responsible science in the 21st century.