summer-2003-Part 2-live - Nieman Foundation - Harvard University

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Medical Reportinggrowing like an enormous tumorand impeding serious research farinto the future. How much better itwould be if, like Alexander inAnatolia, someone could seize asword and slash through the knot.Earlier in this seminar, sponsoredby the Knight Center for SpecializedJournalism, WashingtonPost science writer Rick Weiss hadreferred to stem cell research as aform of guaranteed employmentfor journalists. But Bush’s directiveto the NIH, I concluded, had createda similar guaranteed employmentprogram for a certain breedof federal workers. They’d spendmonths writing regulations intendedto prevent scientists fromusing a penny of federal funds forexamining cells from lines otherthan those on the NIH human embryonicstem cell registry. They’dprovide unique codes for each cellline, assuring that each cell existedbefore 9 p.m. Eastern Daylight Timeon August 9, 2001. They would alsodevote some of their energies to“parsing facilities and administrativecosts for eligible research fromineligible research,” in the wordsof this senior policy adviser, all thewhile believing they were advancingthe cause of science.Since that seminar, issues involvingstem cell research and its new cousin,“therapeutic cloning,” have become, ifanything, even murkier. Much of thepolitical resistance to such research isbased on religious beliefs against theidea of manipulating human life, whichsupposedly begins at the moment ofconception. But is that the moment?Or is it the moment of implantation? Orof cell differentiation? There are differingviews that shape different answersto these and other questions. As someonewho lives in the San Francisco BayArea—and tries to reflect and informpublic opinion—I am attuned, perhapsmore than most Americans, to the widevariety of views on humanity, the individual,and community held by Muslims,Hindus, Buddhists and others. Inour readership, the portion of residentswho agree with President Bushon this issue is small.An eight-cell embryo is shown three days afterinsemination. Photo by Eastern Virginia MedicalSchool/The Associated Press.President Bush might have thoughthe had forged an ideal compromisebetween science and religion when heannounced his policy. But this compromiseturned out to be more likewhat King Solomon suggested to thetwo women squabbling about an infant:Cut the baby in half and each getsan equal part. In this case, the metaphoricalsword is more like Solomon’sthan Alexander’s.This seminar provided many “aha”moments similar to these and, sinceI’ve returned to my job, I’ve struggledto keep up with—and explain to readers—implicationsof the most currentresearch, policy initiatives, and internationalcompetition in biotechnology.For someone who majored in English,as I did, simply keeping up with scientificnews about stem cell research andcloning has proved challenging. WhenI took biology courses in high schooland college, mitochondria’s role wassteeped in mystery, and the first hearttransplant had just occurred. Geneticcauses of many diseases weren’teven suspected, much less explored.Now, to write editorials, Iam trying to understand how cellsfrom a blastocyst could be coaxedinto producing insulin and how anucleus could be teased out of onecell and introduced into a humanegg, creating potential life—withoutconception.Because I am a journalist fromCalifornia, at this seminar I fieldedmany questions from colleagueson my state’s encouragement ofstem cell research. Weeks earlier,I’d written an editorial applaudingCalifornia’s forward-looking legislatureand governor for approvinga bill endorsing research on stemcells and allowing so-called therapeuticcloning, which many proponentsprefer to call somatic cellnuclear transfer. (California, alongwith nearly everyone except theRaelian cultists, opposes reproductivecloning of humans.) AnotherCalifornian, Senator DianneFeinstein, is a leader among thosecalling for federal legislation allowingresearch involving stem cellsand nuclear transfer, while banningreproductive cloning. I explainedto the other journalists that California’smove was purely symbolic—a point Ihad made in my editorial, since futurefederal legislation would trump statelaw and the lack of federal fundingwould cripple research that called forcreation of new stem lines.I was wrong to portray California’spolicy as being so modest. Symbolismturned out to be stronger than I thoughtit was. Since September 2002, severalstates have followed California’s lead.Of course, several other states havegone the opposite direction by banningall cloning. In the states calling forthe freedom to pursue research, theproponents have made it clear thatcongressional action to ban stem cellresearch—as called for in a bill thattwice passed the House but not theSenate—wouldn’t reflect the opinionof most Americans.As for the crippling effect of Bush’sdecision, I was a bit off the mark there,too. What I had not considered strongly28 Nieman Reports / Summer 2003
Medical Reportingenough was the possibility that privatefunders would step in to finance suchresearch. Several weeks after the seminar,Stanford University announced ananonymous grant of $12 million inprivate seed money that would help toestablish a new Institute for Cancer/Stem Cell Biology and Medicine. Andhigh-tech leader Andy Grove pledgedfive million dollars to help launch anew embryonic stem cell program atthe University of California-San Francisco.Those amounts are far less thanthe billions of dollars that are availableto the NIH. But, along with privatefirms such as Geron, they will help tokeep Northern California in the forefrontof research. And they give researcherseven more ability and reasonto resist federal restrictions.Getting Past the Media HypeThe history of stem cell research isshort. The future could hold tremendouspromise. Or stem cells could becomethe biological equivalent of coldfusion. So far, the media hype aboutthem has far outrun their reality interms of current applications. Whathas been most prominent to most readers,listeners and viewers in these debatesabout stem cells and cloning isthe turmoil of false hopes and celebrityexploitation, as famous people likeMichael J. Fox and Christopher Reevearrive on Capitol Hill to testify. Religiousferment combined with the antiintellectualistfuror and political manipulationhave also served to obscurewhat’s really happening in the lab.In trying to inform public debateabout these issues, it doesn’t help thatso few people who aren’t scientists ordoctors understand the complex scienceinvolved or even know the differencebetween embryonic stem cellsand cloned cells. On the other hand,many of the Mercury News’s readersunderstand the science perfectly wellbecause they are the scientists and technicianswho are doing it. Luckily, myeditorials focus on policy and fundingdecisions—and while those decisionsmay be obscure, they reflect humannature, which anyone can understand.Struggling to explain the science,the policy issues, and the ethical concernsis, indeed, as Rick Weiss remindedus, a sort of guaranteed employmentfor journalists. ■Barbara Egbert is an editorial writerat the San Jose Mercury News. Agraduate of San Francisco StateUniversity, she has also worked forthe Nevada Appeal (in Carson City),Reno Gazette-Journal, and Alameda(Calif.) Newspaper Group. Herinterest in health care and medicinewas sparked by a year working as avolunteer at People’s CommunityHealth Center in Baltimore, Maryland.begbert@mercurynews.comCovering Ethical Debates About Medical IssuesJournalists in Nebraska played a role in informing people about the complexities ofthe science and ethics of medical research.By Kathleen RutledgeNebraskans know what to expectfrom the arrival of spring:sandhill cranes returning to thePlatte River, forsythia bursting into yellowbloom, the Cornhusker footballteam rolling onto the practice field.But three years ago, spring broughtwith it news of something so new—and some would say so contrary to therhythms of nature—that it stirred atroubled debate.The revelation: Researchers at thestate’s medical center in Omaha hadbeen using tissue from aborted fetusesto seek cures for diseases such asParkinson’s. Pro-life, pro-choice andother forces soon were fully engagedin strident discourse. State senatorsalso began a contentious debate aboutwhether to forbid the research. In thespan of a few weeks, ordinary Nebraskanswent from not even knowing thatsuch experiments were possible to thediscomfort of grappling with the ethicsof what was happening.It was during that troubled Nebraskaspring that the idea for a reportingproject called “Medical Ethics: ToughChoices” was born.Journalists Inform the PublicThe editorial board of the Lincoln JournalStar had asked for a briefing on thefetal tissue research from people whoworked at the University of NebraskaMedical Center in Omaha. In the closingmoments of that meeting, a medicalcenter official predicted this wasjust the beginning of ethical debatesover state-sponsored medical research.This year debate focused on the use offetal tissue. In future years, geneticprofiling or animal organ transplantsmight be medical issues that spark discussionand debate.Wouldn’t it be better, I mused, ifNebraskans weren’t startled by the nextmedical revelation? Wouldn’t it be betterif they had an opportunity to learnnow about medical research at theirstate-financed medical center that someday might place before them issuesthat involve difficult ethical questions?Nieman Reports / Summer 2003 29
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