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Page 1: In Search of a Wide-Angle Lens

May-June 2011 HASTINGS CENTER REPORT 19

adeliberativeprocessthatmanydisciplinescanuse;weneedtopromoteethicseducationnotastheactofinstillingvalues,butastheactofdevelopingdeliberativeskills.

If we cannot engage in deliberative discussion with thepublicwhowillbeboundbypolicydecisions,thenwewillnotbeabletoshapepolicyrecommendationsthatreflectun-derlyingsocialvalues.Ethicalanalysisofthepolicyissuesofthefuturewillnecessitaterealdeliberationthatcanonlyhap-penwhentrustandrespectbetweencitizensandgovernmentsissecure.Whilethisideaisnotnew,ithasyettobeachieved.Howdoweengagethepublicinthoughtfuldeliberationwithsomanyvaluesystemscoexisting?Howdowegrowrespectforopposition?Pluralism is a strengthofmodern societies,butonethatcompelschangeinthewayweengageeachother.Inapluralisticsociety,ourobligationtopromotejusticecallsuponourobligationstoeachother:tochallengeeachother,todefendourbeliefs,tofostermutualrespect,andtocoexistin theabsenceofconsensuswithoutnotionsof superiority.Theworkofethicsinthenextfortyyearsistocultivatetherespectandwillingnesstodeliberate.Whiletheissueswewillconfrontwillpresentchallengesintheirownright,wemustnotoverlooktheimportanceofourprocess,lestweleavethepublicbehindandourmissionwiththem.

Amy Paul is currently a Ph.D. student in the bioethics and health policy track at Johns Hopkins Bloomberg School of Public Health. She is a graduate of the University of Washington’s Insti-tute for Public Health Genetics. Her research interests are broad and include issues of social justice and women’s health policy, public engagement, and accountability in global health initia-tives and resource allocation.

1.S.Holm,“Policy-MakinginPluralisticSocieties,”inThe Oxford Handbook of Bioethics,ed.B.Steinbock(NewYork:OxfordUniversityPress,Inc.,2007),153-74.

2.A.GutmannandD.Thompson,“DeliberatingaboutBioethics,”Hastings Center Report 27,no.3(1997):38-41;Holm,“Policy-MakinginPluralisticSocieties.”

3. See J. Bovard, “Deliberative Democracy Dementia,” The Free-man 57 no. 5 (2007), http://www.thefreemanonline.org/featured/quotdeliberative-democracyquot-dementia/.

4.GeneticsandPublicPolicyCenter,“PublicEngagementandPar-ticipation,” 2010, http://www.dnapolicy.org/policy.engage.html;K.C.O’Doherty and M.M. Burgess, “Engaging the Public on Biobanks:OutcomesoftheB.C.BiobankDeliberation,”Public Health Genomics 12,no.4(2009):203-215.

5.SeeD.G.Jones,M.R.King,andM.I.Whitaker,“WhoGetsBorn?HowDidNewZealand’sBioethicsCouncilArriveatItsRecommenda-tions?”New Zealand Medical Journal 122,no.1294(2009):84-91.

6.A.C.Regenberg,“TweetingScienceandEthics:SocialMediaasaToolforConstructivePublicEngagement,”American Journal of Bioeth-ics 10,no.5(May2010):30-31.

What issues should bioethics be looking at in thenextfortyyears?Ratherthantakeonnewissues,Ibelievebioethicistsshouldrethinkourapproach

tobioethicaltopicsmoregenerally.Doingsowillrequirere-fashioningthefielditself,butsuchareinventionistheonlywaywecanhelpbioethicsliveuptoitsinitialidealsandberelevanttooursociety.

Is Bioethics Necessary?

Thinkingaboutthefutureofbioethicsshouldbeginwithafundamentalquestion:Isbioethicsevennecessary?Most

bioethicists would certainly think so, and they might findconfirmation inhistoriesof thefield likeDavidRothman’sStrangers at the Bedside,inwhichbioethicswasaresponsetothecollapseofdoctor-patientrelations inthemidtwentiethcentury United States.1 Here, the field emerged to protectvulnerablepopulationsfromexploitativedoctorsandscien-tists.Assuch,itwasalliedwiththecivilrightsandfeministmovements.Whatcouldbemorenecessarythanthat?

But this rosy view of the field’s development has beenhighly questioned. Roger Cooter has argued that bioeth-ics appeared to allow doctors to maintain control over theprovisionofhealthcare;ratherthanaprogressivemovementalignedwithcivil rightsand feminism, itwasa reaction to

InSearchofaWide-AngleLens

BY HAROLD BRASwELL

HaroldBraswell,“InSearchofaWide-AngleLens,”Hastings Center Report41,no.3(2011):19-21.

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theanxietythesemovementsgenerated inphysicians.2HisreadingwouldseemtobesubstantiatedbySusanLederer’saccount of the generation of the Helsinki Declaration, inwhichtheoppositionofU.S.doctorstothedeclaration’spro-hibitionsonexperimentationonchildrenandprisonerswasconnectedtothepharmaceutical industry’sdesiretomaxi-mizeprofit.3Morerecently,variousauthorshaveillustratedhowfoundationalbioethicalconceptslike“autonomy”and“informedconsent”areusedinwaysthatexploitvulnerablepopulations,suchasthepooranddisabled.4

Thesesourcesshowthatwebioethicists,ratherthanlook-ing fornew issues,woulddobetter to look at ourselves.The problem is the way wehave framed our approachesto the field’s key topics. Wehavebeenobsessedwithques-tionsofabortion,euthanasia,stem cell research, and thelike. But the very framingof these issues in bioethi-caldiscoursecanobscure theunderlying forces that createthe problems to begin with,whether these forces be theeconomicorganizationofso-ciety,internalizeddiscrimina-tionagainst thedisabled, theepistemologyofmedicine,or(andmost likely) somecom-binationofallthree.Weneedto find ways to understandthe larger problems that cre-ate the “old” issues—prob-lemsinwhichwecanproductivelyintervene.

A New Model for Bioethics Education

Here we encounter a significant institutional problem:U.S. bioethics education remains tethered to a nar-

rowlydefinedtrainingregimenthatisinadequatetoexploretheunderlyingcausesofthefield’sproblems.Assuch,itfre-quentlydoesnotpreparestudentstounderstandtheissuesthey are supposed to resolve. Consequently, our primaryconcern should be reformulating bioethics education in awaythatgivesstudentsthetoolstounderstandandinvesti-gatethefield’sconcerns.

Bioethics institutes, rather than being oriented aroundthetransmissionofrule-basedknowledge,shouldprovidearobust, interdisciplinarycurriculumthatproducesthinkerscapableofexploringthecomplexcontextofbioethicalissuesandproposingmechanismstoresolvepresentconflicts.Thegoalofthiscurriculumwouldnotbetopreparethinkersto“takesides”oncurrentbioethicaldebates,butinsteadtoex-plorehowtheframingofthesedebatescanmystifytherealissuesatplay.Exploringthedynamicsofproblem constitution

wouldbethefirststeptowardproblemsolving.5Thiswouldmakeitpossibletoproductivelyinterveneindebateswhosetermshavebecomestagnant.

Students emerging from such programs would be pre-paredtocommentonhowthedichotomybetweenthesecu-lar“pro-choice”andthereligious“pro-life”perspectivesthatframesourdiscussionsofabortionandeuthanasiaobscureshow the economic ideologies of both sides in the debatemightencouragepeopletoabortandengageineuthanasia,evenastheynegatewhatever“freedom”mightexistinthatchoice.Theissuewouldbediscussedinmorethanjusteco-

nomicterms:Onecouldtalkabouthow cultural discrimi-nation against the disabledcan be reflected both in thelegal conception of libertyas negative freedom as wellas in the biological reactionsof individuals to particulardiseases. The point wouldnot be to privilege one areaof exploration over another,but to understand that inbioethical issues, as in anyissueinoursociety,ourdivi-sionofknowledge intoneat,seemingly ahistorical disci-plines imperils our ability tointerveneintheproblemsweconfront.

Is “Subcontracting” a Bioethical Issue?

Iwant to recount an anecdote that illustrates how an in-terdisciplinary approach can redefine our conception of

“bioethical”issues.ForoneofthefinalclassesofthecourseIteachatEmoryUniversity,“BioethicsinanInterdisciplin-aryPerspective,”Iorganizedthediscussionaroundarecentcontroversythere:Overtheprecedingmonths,foodserviceworkershadcomplainedabouttheir treatmentbySodexo,the university’s food service provider. They claimed thatSodexo had engaged in abusive labor practices and unionbusting. While such conduct was clearly against Emory’sown labor policy, the university administration refused tointervene because Sodexo employees were subcontracted,and thusnotunderEmory’s jurisdiction.The resultwasatwo-tieredsystemofaccountabilitybetweencontractedandsubcontractedemployeesthatallowedforabusestohappen.

Theissue,becauseofitsproximityandpertinence,seemedtomeagoodcasestudyforexaminingoneofthekeyargu-mentsofthecourse:thatframingsomeissuesas“bioethical”and others as unrelated hinders our ability to understandbioethical issues themselves. I assembled a packet that in-cluded:(1)relevantarticlesfromtheEmorynewspaper,in-cludingstatementsbyworkers,students,Sodexomanagers,

In bioethical issues, as in any issue in our society, our

division of knowledge into neat, seemingly ahistorical

disciplines imperils our ability to intervene in the

problems we confront.

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and the university administration; (2) perspectives on thebenefitsanddrawbacksofunionizationforworkers,employ-ers,andsocietymoregenerally;and(3)generalliteratureonthe legal and ethical dilemmas raised by subcontracting inIraq.Atthetopofthepacket,Iincludedalistofquestions,thefirstofwhichwas:“What,ifany,‘bioethical’issuesdoestheSodexocontroversyraise?”

Formanybioethicists,theanswertothisquestionwouldbe“none.”MystudentsandIcametoadifferentconclusion.Inclass,wediscussed thecaseofoneof theworkers,who,thoughpregnant,wasdeniedbreaktimeandwho,alongwiththeotherworkersdemandingunionization,waspresumablystrugglingtopayherlivingexpenses,includinghealthcare.“Whatifshedecidedtogetanabortion?”Iasked.“Wouldherlaborsituationberelevanttoherdecisiontoabort?”Theanswertothisquestionwasclear,butthestudentswentevenfurther,pointingoutthatlaborstatuswasrelevantnotonlytoabortionbutalsotopracticallyallofthebioethicaltopicswehaddiscussed,includingeuthanasia,organdonation,andeugenics.Atthesametime,ourexaminationofsubcontract-inginIraqshowedthat,whileEmory’sdecisiontoabandontheemployeeswascertainlyamoralfailure,itwasalsopartofasystemicshifttowardsubcontractingpracticesthathadcreatedethicalandlegalconundrumsthroughouttheworld.Thatbioethicistshadwrittenhundredsofthousandsofpageson“autonomy”withoutwritingonearticleaboutitsrelationtosubcontractingseemed,bytheendofclass,anindicationthatthefieldhadmisunderstooditsownpremises.

Thegoalofbioethicsinthenextfortyyearsshouldbetoguaranteethatsuchfundamentalmisunderstandingsdonotoccur.Thiswillhappenbystoppingthesearchfornewtop-icsandinsteadbecomingmorereflectiveaboutourmethodsandmoreproactiveinbuildinginstitutionsthatcanproducethinkerswiththesensitivityandanalyticalskillstorealizethefield’s founding ideals.Doingsowill require redefining thecontoursofnotonlythefield,butalsoourownidentityasprofessionals.Itwillnotbeeasy,butifwewanttoliveuptoourroleasmoralarbitersofsomeofoursociety’s thorniestproblems,itisworkthatwewillbegladtoundertake.

Harold Braswell is a student in the interdisciplinary Ph.D. program at Emory University’s Graduate Institute of the Liberal Arts. His research and teaching combine methods from cultural studies, law, philosophy, and the social sciences to analyze pressing bioethical dilemmas. He applies this interdisciplinary methodol-ogy in his dissertation, which examines the relationship of hospice care to end-of-life autonomy.

1.D.Rothman,Strangers at the Bedside: A History of How Law and Bioethics Transformed Medical Decision Making (NewBrunswick,N.J.:AldineTransaction,2008).

2.R.Cooter,“TheResistibleRiseofMedicalEthics,”Social History of Medicine 8,no.2(1995):257-70.

3.S.E.Lederer,“ChildrenasGuineaPigs:HistoricalPerspectives,”Accountability in Research 10,no.1(2003):1-16.

4.See,forexample,O.Corrigan,“EmptyEthics:TheProblemwithInformedConsent,”Sociology of Health and Illness 25,no.7 (2003):

768-92;P.FarmerandN.G.Campos,“RethinkingMedicalEthics:AViewfromBelow,”Developing World Bioethics 4,no.1(2004):17-41;and C. Gill, “The False Autonomy of Forced Choice: RationalizingSuicideforPersonswithDisabilities,” inContemporary Perspectives on Rational Suicide,ed.J.L.Werth(Philadelpia,Penn.:Routledge,1998),171-80.

5.Formoreontheinvestigationof“problemconstitution”inphilo-sophicallyorientedsocialscienceresearch,seeS.K.White,“TheVeryIdeaofaCriticalSocialScience:APragmatistTurn,”inThe Cambridge Companion to Critical Theory, ed. F. Rush (Cambridge, U.K.: Cam-bridgeUniversityPress,2008),310-35.

Onewintermorning, the twoofus—bothpostdoc-toralfellowsinmedicalhumanitiesandbioethics—gathered with a handful of reproductive science

graduate students in the lab to watch a demonstration onmaking alginate beads.Due to their three-dimensional na-ture,thebeadsarecapableofholdingovarianfollicles—thebeadsactasthoughtheywereasmallovary.Thescientistsinthelabhavemanagedtomaturethefolliclesmaintainedinthebeadsintoeggs,fertilizetheseeggs,andproducethebirthoflivemice.Thisresearchwasbeguninanefforttodevelopameansofgatheringovarianfolliclesfromyounghumancan-cerpatientsbeforetheycommencecancertreatmentthatmayresultintheirinfertility,thuspreservingpartsoftheirovariesforlateruseininvitrofertilization.

But the point of this paper is what else happened thatdayinthelab.Thegraduatestudentsandthefellowsbegan

TwoChicksinaLabwithEggs

BY L ISA CAMPO -ENGELSTEIN AND SARAH B. RODRIGuEz

Lisa Campo-Engelstein and Sarah B. Rodriguez, “Two Chicks in a Lab withEggs,”Hastings Center Report41,no.3(2011):21-23.


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