HERE ARE some givens when dealing with the ethics of scientific research: 1. Federal funding and regulations can be controversial. Remove the funding and needless oversight and the only thing you will lose are groups that almost always propose government controls of biomedical regulations that reflect their own views and a belief in their own moral superiority. 2. The less government gets involved in creating forums for zealots and allowing them a hand in shaping guidelines for research funding, the better off scientific research will be.
The most recent example of these principles is the debate over the National Institutes of Health’s role in stem cell research. A congressional amendment bans federal funding for any research in which an embryo has been destroyed. Two years ago, a decision was made that as long as the scientists received the cells from voluntary donors and did not destroy embryos themselves or derive embryonic cells, the National Institutes of Health could receive funding. Now President Bush seems on the verge of overturning the ruling.
Both sides of the debate have invoked morality. Pro-life groups insist that embryonic cell research destroys life and should look to adults and fetuses that died a natural death for stem cells. Researchers and patient groups state that such a position is tantamount to condemning millions of people with rare disorders to a life without hope and slowing research for years to come.
But on the issue of funding, limited public funding has in some ways inspired both creativity and forced the private sector (non-profit and for profit) to step up to the plate and support stem cell research the way it has supported genomics. As in genomics, where private sector funding far outstripped the federal investment, researchers in the private sector have set the tone for the debate, a debate that has been fairly civil and largely stripped of the hysterics and politicization.
I disagree with Thomas Cech, president of the Howard Hughes Medical Institute, who said that a decision by the Bush Administration to overturn the stem cell decision “would be a most unfortunate circumstance because it would mean the people doing it openly would have to discontinue their work, whereas the people doing it secretly with no oversight and public discussion would be [allowed] to continue.”
With all due respect, this idea of scientists and companies working in hiding like Dr. Evil or Frankenstein in an era of IPOs and 10-Ks, where the overlap between universities, institutional review boards, venture capitalists, biotech firms, and drug companies is part of the new foundation for medical progress is absurd. On the contrary, people in the private sector would have every incentive to conduct their work in an ethical and collegial fashion – without the downside of having some single cell life form with an axe to grind using a public forum to trash their life’s work for a sound bite.
While stem cell research offers a startling example of what can happen when the government gets involved with science, the issue is also likely to affect genomics research in the years to come. Would the current government support funding for research to develop diagnostic tests for diseases that don’t have a cure? How will the government regulate the use of genomic data by researchers and insurance companies?
Maybe it’s time to take a new look at the federal role in medical research, one that recognizes that the private sector can and should play the leading role in many critical areas of medical progress that were once the government’s domain. For the sake of scientific freedom and continued excellence, it’s my belief that in the future, when it comes to government involvement in medical research, less is likely to be more. More on that next time.
Robert Goldberg is a senior fellow at the National Center for Policy Analysis and a senior research fellow at the Ethics and Public Policy Center. You can e-mail him at [email protected] .
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