10/22/2015

SecondOpinionUseofaWomansCellsRaisesEthicalQuestionsNYTimes.com

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SECONDOPINION

ALastingGifttoMedicineThatWasntReallyaGift
ByDENISEGRADY
Published:February1,2010

October22,2015,2:51PM

LivingWithCancer:DecidingAboutDying
TWITTER

FiftyyearsafterHenriettaLacksdiedofcervicalcancerinthe
coloredwardatJohnsHopkinsHospital,herdaughterfinallygota
chancetoseethelegacyshehadunknowinglylefttoscience.A
researcherinalabatHopkinsswungopenafreezerdoorand
showedthedaughter,DeborahLacksPullum,thousandsofvials,
eachholdingmillionsofcellsdescendedfromabitoftissuethat
doctorshadsnippedfromhermotherscervix.
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Ms.LacksPullumgasped.OhGod,
shesaid.Icantbelieveallthatsmy
mother.
Whentheresearcherhandedheroneofthefrozenvials,
Ms.LacksPulluminstinctivelysaid,Shescold,andblew
onthetubetowarmit.Yourefamous,shewhisperedto
thecells.

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Minuteslater,peeringthroughamicroscope,she
pronouncedthembeautiful.Butwhensheaskedthe
researcherwhichwerehermothersnormalcellsand
whichthecancercells,hisanswerrevealedthather
preciousrelicwasnotquitewhatitseemed.Thecells,he
replied,werealljustcancer.

ETHICSHenriettaandDavidLacks
around1945.Doctorsgaveasample
ofthecancerthatkilledhertoa
researcherwithouttellingthefamily.

Related
Excerpt:TheImmortalLifeof
HenriettaLacks(March3,2010)
MoreSecondOpinionColumns
TheSundayBookReviewonThe
ImmortalLifeofHenriettaLacks
(February7,2010)
DwightGarnersReviewofThe
ImmortalLifeofHenriettaLacks
(February3,2010)

Thevignettecomesfromagrippingnewbook,The
ImmortalLifeofHenriettaLacks(CrownPublishers),by
thejournalistRebeccaSkloot.ThestoryofMrs.Lacksand
hercells,andtheauthorsownadventureswithMrs.
Lackssgrownchildren(onefriesheraporkchop,and
anotherslamsheragainstawall)isbyturns
heartbreaking,funnyandunsettling.Thebookraises
troublingquestionsaboutthewayMrs.Lacksandher
familyweretreatedbyresearchersandaboutwhether
patientsshouldcontrolorhavefinancialclaimsontissue
removedfromtheirbodies.

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ThestorybeganinJanuary1951,whenMrs.Lackswas
foundtohavecervicalcancer.Shewastreatedwith
radiumatJohnsHopkins,thestandardofcareinthatday,
buttherewasnostoppingthecancer.Herdoctorhad
neverseenanythinglikeit.Withinmonths,herbodywas
fulloftumors,andshediedinexcruciatingpainthat
October.Shewas31andleftfivechildren,theyoungest
justayearold.Shehadbeenadevotedmother,andthe
childrensufferedterriblywithouther.

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SecondOpinionUseofaWomansCellsRaisesEthicalQuestionsNYTimes.com

NeitherMrs.Lacksnoranyofherrelativesknewthat
doctorshadgivenasampleofhertumortoDr.George
Gey,aHopkinsresearcherwhowastryingtofindcellsthat
wouldliveindefinitelyinculturesoresearcherscould
experimentonthem.Beforeshecamealong,hisefforts
hadfailed.Hercellschangedeverything:theymultiplied
likecrazyandneverdied.
AcelllinecalledHeLa(forHenriettaLacks)wasborn.
Thoseimmortalcellssoonbecametheworkhorseof
laboratorieseverywhere.HeLacellswereusedtodevelop
thefirstpoliovaccine,theywerelaunchedintospacefor
experimentsinzerogravityandtheyhelpedproducedrugs
fornumerousdiseases,includingParkinsons,leukemia
andtheflu.Bynow,literallytonsofthemhavebeen
produced.
Dr.Geydidnotmakemoneyfromthecells,buttheywerecommercialized.Nowtheyare
boughtandsoldeverydaytheworldover,andtheyhavegeneratedmillionsinprofits.
TheLacksfamilynevergotadime.Theywerepoor,withlittleeducationandnohealth
insurance,andsomehadseriousphysicalormentalailments.Buttheydidntevenknow
thattissuehadbeentakenorthatHeLacellsevenexisteduntilmorethan20yearsafter
Mrs.Lackssdeath.Andtheyfoundoutonlybyaccident,whenherdaughterinlawmet
someonefromtheNationalCancerInstitutewhorecognizedhersurnameandsaidhe
wasworkingwithcellsfromawomannamedHenriettaLacks.
ThedaughterinlawrushedhomeandtoldMrs.Lackssson,Lawrence,Partofyour
mother,itsalive!
Whentheylearnedthattheirmotherscellshadsavedlives,thefamilyfeltproud.But
theyalsofeltconfused,abitfrightened,usedandabused.Ithadneveroccurredto
anyonetoaskpermissiontotaketheirmotherstissue,tellthemthathercellshad
changedscientifichistoryoreventosaythankyou.Andcertainlynoonehadever
suggestedthattheydeservedashareoftheprofits.
SomeoftheLackseslatergavebloodtoHopkinsresearchers,thinkingtheywerebeing
testedforcancer,whenreallythescientistswantedtheirgeneticinformationtohelp
determinewhetherHeLacellswerecontaminatingothercultures.WhenMs.Lacks
Pullumaskedarenownedgeneticistatthehospital,VictorMcKusick,abouthermothers
illnessandtheuseofhercells,hegaveheranautographedcopyofanimpenetrable
textbookhehadedited,and,Ms.Sklootwrites,beneathhissignature,hewroteaphone
numberforDeborahtouseformakingappointmentstogivemoreblood.
Theboundsoffairness,respectandsimplecourtesyallseemtohavebeenbreachedin
thecaseoftheLacksfamily.Thegulfbetweenthemandthescientistsrace,class,
educationwasenormousandmadecommunicationdifficult.
AlesscharitableviewisthatitmighthavemadetheLackseseasiertoignore.Whenthe
familysstorybecameknownintheblackcommunityinBaltimore,Ms.Sklootwrites,it
wasseenasthecaseofablackwomanwhosebodyhadbeenexploitedbywhite
scientists.
Ideasaboutinformedconsenthavechangedinthelast60years,andtheformsnow
giventopeoplehavingsurgeryorbiopsiesusuallyspelloutthattissueremovedfrom
themmaybeusedforresearch.ButMs.Sklootpointsoutthatpatientstodaydontreally
haveanymorecontroloverremovedbodypartsthanMrs.Lacksdid.Mostpeoplejust
obedientlysigntheforms.
Whichisasitshouldbe,manyscientistssay,arguingthatMrs.Lackssimmortalcells
wereanaccidentofbiology,notsomethingshecreatedorinvented,andwereusedto
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SecondOpinionUseofaWomansCellsRaisesEthicalQuestionsNYTimes.com

benefitcountlessothers.Mostofwhatisremovedfrompeopleisofnovalueanyway,and
researcherssayitwouldbetoocomplicatedandwouldhinderprogressifownershipof
suchthingswereassignedtopatientsandroyaltieshadtobepaid.
Butinanageinwhichpeoplecanbuysongswiththeclickofamouse,thatargument
maybecomehardertodefend.
Sofar,thecourtshavesidedwithscientists,eveninacaseinthe1980sinwhicha
leukemiapatientsspleenandothertissuesturnedouttobeabiomedicalgoldminefor
hisdoctor.Thepatient,JohnMoore,suedhisdoctorafterdiscoveringthatthedoctorhad
filedforapatentonhiscellsandcertainproteinstheymade,andhadcreatedacellline
calledMowithamarketvalueestimatedat$3billion.Mr.Mooreultimatelylostbefore
theCaliforniaSupremeCourt.
AsMs.Sklootwritesinherlastchapter,thisissueisnotgoingaway.Ifanything,itmay
becomeincreasinglyimportant,becausethescaleoftissueresearchisgrowing,and
peoplearebecomingsavvieraboutthemoneytobemadeandalsothepotentialforabuse
iftissuesamplesareusedtoferretoutgeneticinformation.
Thenotionoftissuerightshasinspiredanewcategoryofactivists.Thequestionthat
comesuprepeatedlyis,ifscientistsorcompaniescancommercializeapatientscellsor
tissues,doesntthatpatient,asprovideroftherawmaterial,deserveasayaboutitand
maybeashareofanyprofitsthatresult?Fewerpeoplethesedaysmaybewillingtotake
noforananswer.
Thisarticlehasbeenrevisedtoreflectthefollowingcorrection:
Correction:February4,2010
TheSecondOpinioncolumnonTuesday,aboutHenriettaLacks,whounknowingly
contributedcancercellstomedicalresearchersbeforeherdeathin1951,misstatedthe
surnameofoneofherchildrenatonepoint.Asnotedelsewhereinthecolumn,sheis
DeborahLacksPullum,notPullumLacks.
AversionofthisarticleappearedinprintonFebruary2,2010,onpage
D5oftheNewYorkedition.

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