Transforming Medical Science into Public Policy: An Editorial Writer Describes Her Role in Helping Readers Understand the Issues. (Medical Reporting)
Egbert, Barbara, Nieman Reports
Tension between scientific research and public policy is natural and even desirable. The conflicts enveloping policymaking about stem cell research have resulted, however, in a Gordian knot of red tape. A consequence: reduced support for cutting-edge research and hobbled prospects for the growth of biotechnology in the United States. Dimensions of this costly and counterproductive maze became clearer to me last October when a senior policy adviser at the National Institutes of Health (NIH) guided me and other journalists attending a stem cell research seminar through regulations that governed scientists who received federal funding.
As an editorial writer at the San Jose Mercury News focused on writing about medical and health issues, I was aware that in August 2001 President Bush had placed significant barriers in the path of such research by limiting it to already existing lines of stem cells. Before attending this seminar, however, I hadn't realized to what extent he had, in just a few words, created the need for such a massive structure of rules, documents, timelines, supplements and accounting procedures.
Illuminating Policy Debates
Therein lies, of course, one of the main reasons for attending such a seminar. While science writers have the job of explaining science, my job is to delve into the political decisions that affect what scientists get to do with our tax dollars. Behind the whiz-bang stories of far-reaching discoveries and cosmic breakthroughs are the little-noticed policy debates that shape the future of research in this country. The ways in which politics is allowed to trump science in this country is something that seldom makes the "science and technology" sections, but that I believe readers ought to know. In-depth seminars provide time to delve into these issues. And in the dim recesses of this NIH meeting room, I began to imagine this intertwined mass of requirements growing like an enormous tumor and impeding serious research far into the future. How much better it would be if, like Alexander in Anatolia, someone could seize a sword and slash through the knot.
Earlier in this seminar, sponsored by the Knight Center for Specialized Journalism, Washington Post science writer Rick Weiss had referred to stem cell research as a form of guaranteed employment for journalists. But Bush's directive to the NIH, I concluded, had created a similar guaranteed employment program for a certain breed of federal workers. They'd spend months writing regulations intended to prevent scientists from using a penny of federal funds for examining cells from lines other than those on the NIH human embryonic stem cell registry. They'd provide unique codes for each cell line, assuring that each cell existed before 9 p.m. Eastern Daylight Time on August 9, 2001. They would also devote some of their energies to "parsing facilities and administrative costs for eligible research from ineligible research," in the words of this senior policy adviser, all the while believing they were advancing the cause of science.
Since that seminar, issues involving stem cell research and its new cousin, "therapeutic cloning," have become, if anything, even murkier. Much of the political resistance to such research is based on religious beliefs against the idea of manipulating human life, which supposedly begins at the moment of conception. But is that the moment? Or is it the moment of implantation? Or of cell differentiation? There are differing views that shape different answers to these and other questions. As someone who lives in the San Francisco Bay Area--and tries to reflect and inform public opinion--I am attuned, perhaps more than most Americans, to the wide variety of views on humanity, the individual, and community held by Muslims, Hindus, Buddhists and others. In our readership, the portion of residents who agree with President Bush on this issue is small.
President Bush might have thought he had forged an ideal compromise between science and religion when he announced his policy. …