i lile were like startrek,alta charo'sjob might not be sopassed proposition 71 to provide $3...

8

Upload: others

Post on 24-Aug-2020

0 views

Category:

Documents


0 download

TRANSCRIPT

Page 1: I lile were like StarTrek,Alta Charo'sjob might not be sopassed Proposition 71 to provide $3 billion in state taxpayer money for stem cell research. The vote unleashed a competition
Page 2: I lile were like StarTrek,Alta Charo'sjob might not be sopassed Proposition 71 to provide $3 billion in state taxpayer money for stem cell research. The vote unleashed a competition

I lile were like "Star Trek," Alta Charo's job might not be sochallenging. The way Charo sees it, "Star Trek" epitomizes aworld inhabited bv '1echno-optimists," or those, like herself,who think 01 technologv and science as making society more

interesting, more creative, and, most 01 all, a bener place.

Yet in real life there's a fundamental divide,and techno-optimists intermingle with"techno-pessimists" - those who shy awayfrom and are wary of scientific advancement.The constant tension between these twogroups provides the energy that fuels Charo'swork. The resulting conflict is what givesCharo the opportunity to make such animpact and ultimately influence the way thatscience is conducted in today's society.

We're talking about the most controver-sial and high tech science - embryoresearch, cloning, stem cells - and Charothinks, discusses, and writes about theseissues on a daily basis. She is not a white-coated scientist growing cells in a laboratory.Nor is she a patient desperately advocaringfor the continuation of such research in thehopes of benefiting from a cure. Nor is shean elected politician rrying to convince con-stituents of the need to restrict or regulatescientific and medical progress.

Rather, Charo is a world-renownedbioethicist - a role that often puts her atthe epicenter of conflict between vastlydifferent interest groups. She is a facultymember of both the law and medical schoolsat rhe University of Wisconsin, where she isthe Elizabeth S. Wilson-Bascom Professor ofLaw and Bioerhics as well as associate deanfor research and faculty development at thelaw school. Her knowledge base in dual dis-ciplines translates into an impressive grasp ofthe legal and scientific issues that are theessence of today's bioethical dilemmas.

That is why Charo is often called upon todissect and analyze the controversy, and thenadvise national leaders and consult withother international experts in developingworkable guidelines.

Not your average job, bur then again,Charo is far from your average person. Mostpeople who hear her speak about bioethicswalk away impressed. She exudes energy,passion, intelligence, and humor. Most ofall, she moves her listeners to think, consider,and perhaps even react. And that is howCharo best accomplishes her goal.

Carl Gulbrandsen, managing director ofthe Wisconsin Alumni Research Foundation(WARF), said ir best when he inrroducedCharo as rhe keynote speaker at a BioethicsSymposium last spring. "She's a gifted speaker,and she speaks very fast - so you'd betterlisten fast!"

While it can be a challenge to keep upwith Charo, most audience members trytheir hardest. Because wherher or not youagree with her views about issues as loadedas stem cell research, therapeutic cloning,and the government's role in regulatingmorality, you have to agree she makes acompelling argument.

Norman Fost, a professor of pediatricsand the history of medicine at UW-Madison and director of the program inmedical ethics, has been a valued friend andcolleague of Charo's since she joined theUW faculty in 1989. "I remember when Ifirst met her - I had the same reaction as

www.law.wisc.edu/alumni GARGOYLE 29

Page 3: I lile were like StarTrek,Alta Charo'sjob might not be sopassed Proposition 71 to provide $3 billion in state taxpayer money for stem cell research. The vote unleashed a competition

Her knowledge base in dual disciplines translates intoan impressive grasp of the legal and scientific issuesthat are the essence of todav's bioethical dilemmas.

everyone else," he says. "She's just a remarkable person.She combines extraordinary intellect and creativity,humor, wit, and insight that make you want to bearound her. She has this effect on everyone." Quitecomplimentary, especially given that Charo considersFost to be one of the most influential mentors in herown rise to prominence.

from the Beltline to the BeltwaV-And BackA crowning achievement in Charo's long list of

career accomplishments was her participation as amember of the U.S. National Bioethics AdvisoryCommission under the Clinton administration. Shehad been serving on the National Institutes of HealthHuman Embryo Research Panel in the mid-1990s,where she helped develop guidelines for the proper useof discarded embryos for scientific research. Charo'sname rose to the top when in 1996 President Clintondecided to appoint a bioethics commission. Over thecourse of five years the commission ultimately draftedsix different reports on topics that included cloning, stemcell research, research involving human participants, and

international policy tegarding clinical trials in develop-ing countries. Charo recalls that as an overwhelmingphase in her life, marked by constant travel betweenher UW faculty office and the commission's headquartersin Washington.

The pressure reached a frenzy level in early 1997when the news broke that Scottish scientist IanWilmut had created a sheep named Dolly throughthe process of cloning. Within days of the officialannouncement, President Clinton instituted a ban onfederal funding related to attempts to clone humanbeings using this new technique. He then asked therecently appointed commission to address the ethicaland legal issues that surrounded the subject of cloninghuman beings. Their deadline? Ninety days.

Kathi Hanna, a science and health policy consultantin the Washington area who served as the commission'sresearch director and principal writer, remembers thestress they all felt. She frankly describes that time asbeing "pretty hellish," yet she cannot say enough aboutthe role that Charo played in drafting that particularreport. "Alta was extremely helpful. She ended updoing a lot of the writing and editing, and she workedwith me at all times - over weekends and late at

night, or when-ever I called onher to help."

Beyond thetime commit-ment, her intel-lectual contribu-tion was notable."The clarity ofher thinking isamazing," saysHanna. ''Andshe's also veryinnovative -she thinks ofthings in a waythat no one elsedoes, and she'snot afraid to bewrong. Alta isvery courageousin terms ofthrowing thingsout there, and

Charo's name rose to the top when in 1996 President Clinton decided to appoint a U.S.National Bioethics Advisory Commission.

30 GARGOYLE Summer 2005

Page 4: I lile were like StarTrek,Alta Charo'sjob might not be sopassed Proposition 71 to provide $3 billion in state taxpayer money for stem cell research. The vote unleashed a competition

The pressure reached a Irenzv level in earlv 1997 whenthe news broke that Sconish scientist Ian Wilmut had

created a sheep named Dollv through the process01cloning.

Doing a presentation on new reproductive technologies with Vice President AI Gore.

we've alwaysappreciatedthat."

In the end,the panel votedfor a three-yearmoratorium onany effort to usecloning to con-ceive a child -or reproductivecloning. WhileCharo makes itclear that shehas never votedto ban or evenplace a moratori-um on basicscience researchthat usescloning, in thiscase the issuewas about repro-ductive cloning,and she firmly believed that at that time the scienceand technology was manifestly unsafe for humans.

Despite the rigorous demands and the controversyassociated with that particular report, Charo says ifgiven the chance to do it again, she would - "in aheartbeat." That is no surprise considering how these areprecisely the challenges that energize and exhilarate her.Not to mention the reward of knowing that what shehelped to create had a critical and favorable impact onscientists, legislators, and the future of cloning tesearch.

"The vast majority of government committeesproduce nothing but reports that sit on shelves collect-ing dust. But every once in a while your work will riseagainst the general noise level and help crystallize apublic debate," says Charo. "Our cloning report is anexample of that. At the time, this topic [cloning] wasall over the news - there were calls for immediatecriminal penalties and bills introduced into legislaturewithin weeks of the announcement.

"We produced a report that was calming, sobering,and returned public discussion to facts rather than fan-tasy," she continues. "It served to slow down and stoplots of energy on Capitol Hill for draconian criminalmeasures. It gave the president room to submit a bill

to Congress that would ask for a moratorium, not aban, on any effort to do human cloning research untilthe science was better understood. Yet it providedprotection for scientific research, and although thebill didn't pass, we helped enormously to stop whatappeared to be an unstoppable train."

Enter Stem CellsWhile issues surrounding embryo research and

human cloning were keeping bioethicists busy, thingsonly got hotter when it was announced in 1998 thatembryonic stem cells had for the first time been grownin a laboratory. The promise of stem cell technologyprovided more fuel for politicians butting heads,pro-lifers and pro-choice supporters, and especiallyadvocates for what until then had remained the mostelusive medical cures. The world was crying out forrational and informed minds to sort through the mess.

How fortuitous that the OW-Madison laboratoryof James Thomson - the place where it all began -is only a short walk across campus from Charos facultyoffice. Thomson, a OW professor of anatomy, was the

www.law.wisc.edu/alumni GARGOYLE 31

Page 5: I lile were like StarTrek,Alta Charo'sjob might not be sopassed Proposition 71 to provide $3 billion in state taxpayer money for stem cell research. The vote unleashed a competition

Iwas extremelv fortunate that Alta Charo happened to beon this campus when I decided to attempt to derive

human embrvonic stem cells, savs pioneeringresearcher James Thomson.

first to successfully coax these cells to grow in a petridish, and in doing so opened the door to using stemcells as powerful tools in the development of treat-ments for a wide variety of devastating diseases.

It is also fortunate that Thomson was as sensitiveto the intellectual issues tied to his research as he wasto the biological needs of these magnificent cells."Jamie understood the explosiveness of this discoveryand all the ethical issues, and he spoke with Alta andmyselflong before beginning the research and submit-ting his protocol to the IRB [Institutional RegulatoryBoard]," says Norm Fost. "He completely predictedthe issues that would arise."

Charo and Fost, working with the UW BioethicsAdvisory Committee, participated in the rathermomentous decision of whether to let the groundbreak-ing research move ahead and under what conditions."The UW was way ahead of the pack in developing theguidelines, and Alta was essential to all this," says Fost."As part of Clinton's committee on embryo research,she had a deep understanding of the issues; she hadbeen through these discussions, so she was that muchmore valuable."

Thomson couldn't agree more. "I was extremelyfortunate that Alta Charo happened to be on this campuswhen I decided to attempt to derive human embryonicstem cells,"he says. "Alta made herself available early inthe process when I was just considering this line of

research, and it certainly increased my comfort level thatI was not doing this in an ethical vacuum."

Once the code behind the science of growingand manipulating stem cells was cracked, the ensuingcontroversy - now highly emotional and political -stole the limelight. The 2004 presidential election wasmarked by the stem cell debate as a hot-button topic.In state elections in California that same day, voterspassed Proposition 71 to provide $3 billion in statetaxpayer money for stem cell research. The voteunleashed a competition among states to support andretain stem cell research.

Charo acknowledges that California's Proposition71 represents a challenge for the state of Wisconsin."In a field characterized by an absence of federalfunding and the presence of political controversy,California provides a nearly unique combination ofpolitical and state government funding," she says. Yetshe is encouraged by a new initiative announced byWisconsin Governor Jim Doyle last November, justtwo weeks after California passed its groundbreakinglegislation.

State and private dollars will be used to build a$375 million research facility on the UW campus -the Wisconsin Institute for Discovery - specificallyfor the purpose of centralizing stem cell and otherresearch aimed at curing diseases such as Alzheimer's,Parkinson's, and diabetes. Construction of the institute

is slated to beginthis year andwill proceed inthree phases overthe course ofa decade."GovernorDoyle's initiativegoes a long waytoward keepingWisconsin com-petitive," saysCharo, "butthere's no doubtthat California isnow a force tobe respected."

But compet-ing forces onlyinspire Charo.

Meet the colleagues: The UW's bioethics team is made up of (standing from left) DirectorNorman Fost, Alan Weisbard, Pilar Ossorio, and Dan Hausman. Sitting from left: Charo,Linda Hogle, and Rob Streiffer.

32 GARGOYLE Summer 2005

Page 6: I lile were like StarTrek,Alta Charo'sjob might not be sopassed Proposition 71 to provide $3 billion in state taxpayer money for stem cell research. The vote unleashed a competition

While doing volunteer work with the Sierra Club inBoston, Charo witnessed how a law degree couldbe more valuable than a degree in biologV if she

pursued a career in environmental activism.

Talking head: Charo's wide-ranging expertise and ability to explain scienceto a general audience make her a media favorite.

With every opportunity to enlightenthe public, provide her expertise onbioethics panels, and champion thepositive potential of stem cells, shesends a passionate message. Sheviews stem cell research as the trueticket to developing therapies for awide range of debilitating illnessesthat include Parkinson's disease,juvenile diabetes, spinal cord injury,and heart disease. She is deeplytroubled about the prevailing politi-cal attitudes and legislative obstaclesthat may stand in the way ofadvancing science, and ultimatelymedical cures. The "criminalization"of state-by-state legislation that nowmakes it illegal to conduct stem cellresearch is an issue about which shelectures frequently.

It is not only stem cell research,but also the combination of stemcell and cloning technologies that Charo advocates ifeffective medical therapies are ever to be developed. Toillustrate this, Charo uses breast cancer, or more specif-ically, the way in which scientists can elucidate howbreast cancer often develops from a single gene muta-tion called BRCA 1. First, scientists must utilize thetechnique called therapeutic cloning to clone embryosthat carry this particular genetic mutation. A singlecell taken from a breast cancer patient carrying theBRCA 1 mutation is inserted into an egg whose nucle-us has been removed. The egg will begin to developinto an embryo whose cells all contain that exact sameDNA and thus carry the mutation of interest,

Once the embryo has divided to about 100 cellsin size, scientists remove the stem cells and use stemcell technology to manipulate them into becomingbreast tissue. With a uniform supply of breast cells -all containing the BRCA 1 mutation - researcherscan carefully observe how, when, and why these cellsderail from the normal process of breast cell develop-ment and instead turn cancerous. With the power toinvestigate breast cancer genetics in this fashion scien-tists hope to eventually figute out the best way to haltthe process.

"That's why we want to do cloning," says Charo."Not to make babies, but to make tissue, and touncover the secrets of genetic disease."

UPfrom FlatbushCharo's rise to prominence in her field is only

enhanced by the story behind her family's humble startin this country. As liberal, nonreligious Jews with aninherent appreciation of political and religious freedom,Charo's immigrant parents instilled in their daughtera spark to make a difference.

Her father was from a Polish town near theRussian border. Her mother's family fled Russia nearthe border of Finland. "My parents came here becauseit was infinitely better than where they came from,"Charo says. "Something about their experiences gave methe impression that my job was to keep improving thisplace and to do something that is bigger than yourself."

While they may have been new to America,Charo describes her parents as being very progressiveand "science-oriented." Charo also was influenced bythe era in which she was growing up, the l%Os and1970s, which she calls the "age of science andprogress." Yet she also recalls a childhood that was farfrom easy. She, her parents, and her two older brothersshared a cramped three-room apartment in theFlatbush section of Brooklyn. During times when herfather's TV repair business was struggling, Charo'smother supported the entire family on her salary as amiddle and high school math teacher in the public

www.law.wisc.edu/alumni GARGOYLE 33

Page 7: I lile were like StarTrek,Alta Charo'sjob might not be sopassed Proposition 71 to provide $3 billion in state taxpayer money for stem cell research. The vote unleashed a competition

Charo touts the universitv culture-specificallv thehighlV interdisciplinarv nature of the UW law andmedical schools-as helping her keep UP with the

ever-changing medical technologv and ethicalviews regarding scientific advancement.

Above top: Charo earned her bach-elor's degree in biology at HarvardUniversity. Above bottom: Charotook every course available thatcombined law and science atColumbia University School of Law.

schools. Charoremembers goingthrough a rebel-lious stage, andher insatiablein tellectualcuriosity movedher to tryoutvarious religioussects the waymost teens dur-ing that timewere exploringthe effects of cer-tain mind-alter-ing chemicals.

Charo wasbrilliant. Herexcellent gradesand insuppress-ible intelligencelanded her a fullscholarship toHarvardUniversity.There sheearned her bach-elor's degree inbiology with anemphasis onbehavioral ecolo-gy and evolu-tionary theory.She planned to

apply to graduate school to continue these studies aftergraduating from Harvard in 1979 but then questionedher decision as friends urged her to consider lawschool. They thought law school might better fit herpersonality, and they knew she hoped to pursue acareer in environmental activism. Moreover, whiledoing volunteer work with the Sierra Club in Boston,Charo witnessed how a law degree could be more valu-able than a degree in biology if she pursued that field.

In the end, she took entry tests for both law andgraduate school; her test results provided the answershe was looking for. "My GRE score in biology was

34 GARGOYLE Summer 2005

respectable but not stellar; my LSAT score was nearlyoff the charts," she recalls. "I guess that told me some-thing about my strengths and weaknesses, so I chose toapply to law school."

Interestingly, all three Charo siblings rose to theirfull potential (there's something to be said about goodgenes), and applied their early respect and passion forscience toward impressive careers. One brother iscurrently a medical researcher at the University ofCalifornia at San Francisco, while her other brother isan engineer and works on satellite-surveillance projectsfor the National Academy of Sciences.

While earning her law degree from the ColumbiaUniversity School of Law, Charo took every courseavailable that combined law and science. After gradu-ating in 1982, she was hired as a legal analyst for thenow defunct Office of Technology Assessment, a feder-al agency responsible for reporting to Congress onissues of science and technology. This was followedby a short stint with the Agency for InternationalDevelopment, further whetting her appetite for thegrowing field of bioethics. Charo then began searchingfor a job in academia, and says she was surprisedwhen the University of Wisconsin offered her a jointappointment in the law and medical schools. Finally,she was on a path that seemed more likely to provideher the opportunity to do something bigger and better."The bioethics field is not just about the single conflictover whether you tell someone about your patient'sgenetic illness," she says. "Rather, it's about trying tofigure out a way to manage scientific and medicaladvances in a fashion that improves the world."

ASvmbiotic RelationshipWi th 15 years of teaching behind her, Charo is

still going strong. Her involvement with variousnational commissions and international advisory pan-els means that jet lag is a constant challenge. One ofher most important commitments is serving on theNational Academy of Sciences' Board of Life Sciences,where she is working to develop national voluntaryguidelines for stem cell research. Then there are all theresponsibilities Charo tackles as a member of the UWfaculty. She has been a member of the UW Hospital

Page 8: I lile were like StarTrek,Alta Charo'sjob might not be sopassed Proposition 71 to provide $3 billion in state taxpayer money for stem cell research. The vote unleashed a competition

clinical ethics committee, the university's InstitutionalReview Board for the protection of human subjects inmedical research, and the university's BioethicsAdvisory Committee. Charo currently serves on theadvisory boards of the Wisconsin Stem Cell ResearchProgram and the WiCell Research Institute - a pri-vate organization created to provide human embryonicstem cells to academic scientists for research purposes.Her appointment in 2002 as the law school's associatedean for research and faculty development requiresmore administrative duties than she would prefer, yetshe continues ro teach, learn, listen, and think aboutthe most cutting edge bioethical issues.

"She has an enormous energy level, like theEnergizer Bunny. She just never seems to say no toanything," says Fost. "She's in the upper one percentileof UW members involved in everything - outreach,public policy, federal policy - where she brings heracademic work to both the community and policy-making."

Despite the demands, Charo continues ro be adynamic teacher and lecturer, Fost notes. "This isbecause she combines a very deep understanding ofbiological issues - she understands the science, yetshe combines that with the nuances and understandingof the law, ethics, and politics to better illuminatethese complex issues."

Charo's commitment to the UW is balanced bythe less tangible benefits she gains by being part of theUW faculty community. When asked how she success-fully assimilates and keeps up to speed with the ever-changing medical technology and ethical moods andviews regarding scientific advancement, Charo toutsthe university culture - specifically the highly inter-disciplinary nature of the UW law and medicalschools.

"People here don't exist in a silo," she says. "I hearfrom others and spend much of my time attending sci-entific talks, working on committees, and collaborat-ing on papers with medical and science colleagues. Theresult is that I'm constantly exposed to the substantivecontent of science - I get to read, listen, and speak topeople about stuff not even published yet - so I'macutely aware of what's really happening.

"One half of my life is spent with people keepingme immersed in the truthseeking and the modesty thatis science - and I listen to them and keep in mindthe realistic time frame of scientific discovery," shecontinues. "Then I go back to the law school and hearabout the economics, the policymaking, and this givesme a much better ability to estimate what is reallygoing to be happening next. Also, there is a greatemphasis on service here, and this further exposes meto the politics of what's really happening. So, it all

comes together: science, law, economics, and politics- and I see myself collecting all of this."

It also helps that Charo is an avid collector ofnews, which she picks up every day, usually first thingin the morning, from the Internet, the vehicle ofchoice that feeds her insatiable need for information.She runs an informal bioethics news service for herselfand colleagues and scans every bioethics story that hasany connection to what she studies. This includesreading all the major international English newspapers,as well as a smattering of French and Spanish journals.

"I provide a clipping service to others, but I haveto read it all anyway," she says. "It's what keeps me upto speed, and it just makes it that much easier to beable to see a little further down the road."

Pairing her gift of teaching bioethics and herundisputed obsession with "Star Trek," Charo makesno secret of her dream to create what she says couldone day be this country's most oversubscribed under-graduate course in bioethics. She calls it "BioethicsTrek" and describes it as an exploration of current andfuture bioethics topics through the narrative lens ofillustrative "Star Trek" episodes. These topics includenotions of personal identity, illness and health, repro-duction, medical research, resource allocation, deathand dying, overpopulation, bioterrorisrn, and immor-tality.

"Some of these issues and questions are incrediblydifficult to discuss and teach," she says, "but by usingthese "Star Trek" episodes as a way to broach thesesubjects, it can be very liberating."

Charo has figured out a way to apply her techno-optimist view of the world to her method of teaching.While it may help her students to more freely debatethe thorny issues intrinsic to the study of bioethics,Charo shouldn't strive to make her field any moreblack-and-white. For then, the intellectual challengewouldn't be quite so great, and Charo might not havethe chance to shine quite so brightly.

Nicole Resnick has a Ph.D. in molecular biology andwas a researcherfOr many years. She is now a journalistspecializing in articles about science, health, and medicalresearch. Like Charo, she was born in Brooklyn-andalso like Charo, she has learned to love life in theMidwest.

www.law.wisc.edu/alumni GARGOYLE 35