6/30/2021 O S D, 150 S D - T N T

://.e.c/2011/09/06/ea/06d.

One Spem Dono, 150 Offping

By Jacqueline Mroz

Se. 5, 2011

CynthiaDailyandherpartnerusedadonortoconceiveababysevenyearsago,andtheyhopedthatonedaytheirson wouldgettoknowsomeofhishalfsiblingsanextendedfamilyofsortsformoderntimes.

SoMs.DailysearchedaWeb-basedregistryforotherchildrenfatheredbythesamedonorandhelpedtocreateanonline grouptotrackthem.Overtheyears,shewatchedthenumberofchildreninhersonsgroupgrow.

Andgrow.

Todaythereare150children,allconceivedwithspermfromonedonor,inthisgroupofhalfsiblings,andmoreareontheway. Itswildwhenweseethemalltogethertheyalllookalike,saidMs.Daily,48,asocialworkerintheWashingtonareawho sometimesvacationswithotherfamiliesinhersonsgroup.

Asmorewomenchoosetohavebabiesontheirown,andthenumberofchildrenbornthroughartificial increases,outsiegroupsofdonorsiblingsarestartingtoappear.WhileMs.Dailysgroupisamongthelargest,manyothers comprising50ormorehalfsiblingsarecroppinguponWebsitesandinchatgroups,wherespermdonorsaretaggedwith uniqueidentifyingnumbers.

Now,thereisgrowingconcernamongparents,donorsandmedicalexpertsaboutpotentialnegativeconsequencesofhaving somanychildrenfatheredbythesamedonors,includingthepossibilitythatgenesforrarediseasescouldbespreadmore widelythroughthepopulation.Someexpertsareevencallingattentiontotheincreasedoddsofaccidentalincestbetweenhalf sistersandhalfbrothers,whooftenliveclosetooneanother.

Mydaughterknowsherdonorsnumberforthisveryreason,saidthemotherofateenagerconceivedviaspermdonationin Californiawhoaskedthathernamebewithheldtoprotectherdaughtersprivacy.Shesbeeninschoolwithnumerouskids whowerebornthroughdonors.Sheshadcrushesonboyswhoaredonorchildren.Itsbecomepartofsexeducationforher.

Criticssaythatclinicsandspermbanksareearninghugeprofitsbyallowingtoomanychildrentobeconceivedwith spermfrompopulardonors,andthatfamiliesshouldbegivenmoreinformationonthehealthofdonorsandthechildren conceivedwiththeirsperm.Theyarealsocallingforlegallimitsonthenumberofchildrenconceivedusingthesamedonors spermandare-examinationoftheanonymitythatcloaksmanydonors.

Wehavemorerulesthatgointoplacewhenyoubuyausedcarthanwhenyoubuysperm,saidDeboraL.Spar,presidentof BarnardCollegeandauthorofTheBabyBusiness:HowMoney,ScienceandPoliticsDrivetheCommerceofConception. Itsveryclearthatthedealercantsellyoualemon,andtheresinformationaboutthehistoryofthecar.Therearenosuch rulesinthefertilityindustryrightnow.

Althoughothercountries,includingBritain,FranceandSweden,limithowmanychildrenaspermdonorcan,thereisno suchlimitintheUnitedStates.ThereareonlyguidelinesissuedbytheAmericanSocietyforReproductiveMedicine,a professionalgroupthatrecommendsrestrictingconceptionsbyindividualdonorsto25birthsperpopulationof800,000.

Nooneknowshowmanychildrenareborninthiscountryeachyearusingspermdonors.Someestimatesputthenumberat 30,000to60,000,perhapsmore.Mothersofdonorchildrenareaskedtoreportasbirthtothespermbankvoluntarily,but just20to40percentofthemdoso,saidWendyKramer,founderoftheDonorSiblingRegistry.

Becauseofthisdearthofrecords,manyfamiliesturntotheregistrysWebsite,donorsiblingregistry.com,forinformation aboutachildshalfbrothersorhalfsisters.

://../2011/09/06//06.?=IAR0OBN5IC1MUCL565N8MLOSPH4 1/3 6/30/2021 O S D, 150 S D - T N T Ms.Kramer,whohadherson,Ryan,throughaspermdonor,startedtheregistryin2000tohelpconnectso-calleddonor families.OntheWebsite,parentscanregisterthebirthofachildandfindhalfsiblingsbylookingupanumberassignedtoa spermdonor.Manyparents,shesaid,areshockedtolearnjusthowmanyhalfsiblingsachildhas.

Theythinktheirdaughtermayhaveafewsiblings,Ms.Kramersaid,butthentheygoonoursiteandfindouttheir daughteractuallyhas18brothersandsisters.Theyrefreakedout.Imamaedthatthesegroupskeepgrowingandgrowing.

DATA KEEPERWendyKramer,whohadhersonthroughadonor,startedaregistryto helpfamilieslearnaboutachildshalfsiblings. PatrickAndradeforTheNewYorkTimes

Ms.KramersaidthatsomespermbanksintheUnitedStateshavetreateddonorfamiliesunethicallyandthatitistimeto considernewlegislation.

Justasitshappenedinmanyothercountriesaroundtheworld,Ms.Kramersaid,weneedtopubliclyaskthequestions Whatisinthebestinterestsofthechildtobeborn?andIsitfairtobringachildintotheworldwhowillhavenoaccessto knowingaboutonehalfoftheirgenetics,medicalhistoryandancestry?

Thesespermbanksarekeepingdonorsanonymous,makingwomenbabiesandmakingalotofmoney.Butnowhereinthat formulaisdoingwhatsrightforthedonorfamilies.

ManyofthosequestionsweredebatedinBritainshortlyafterthebirththere,in1978,ofLouiseBrown,thefirstbabyborn usinginvitrofertiliation.In1982,theBritishgovernmentappointedacommittee,ledbyMaryWarnock,awell-known Englishphilosopher,tolookintotheissuessurroundingreproductivehealth.

ThegroundbreakingWarnockReportcontainedalistofrecommendations,includingregulationofthesaleofhumansperm andandstrictlimitsonhowmanychildrenadonorcouldfather(10perdonor).Theregulationshavebecomeamodel forindustrypracticesinothercountries.

Itisquiteunpredictablewhattheultimateeffectonthegenepoolofasocietymightbeifdonorswerepermittedtodonateas manytimesastheychose,BaronessWarnockwroterecentlyinane-mail.

Withoutlimits,thesamedonorcouldtheoreticallyproducehundredsofrelatedchildren.Anditisevenpossiblethatcouldoccuramonghundredsofhalfsiblings,saidNaomiR.Cahn,alawprofessoratGeorgeWashingtonUniversityand theauthorofTestTubeFamilies:WhytheFertilityMarketsNeedLegalRegulation.

Spermdonors,too,arebecomingconcerned.WhenIaskedspecificallyhowmanychildrenmightresult,Iwastoldnobody knowsforsurebutthatfivewouldbeasafeestimate,saidaspermdonorinTexaswhoaskedthathisnamebewithheld becauseofprivacyconcerns.Iwastoldthatitwouldbeveryrareforadonortohavemorethan10children.

://../2011/09/06//06.?=IAR0OBN5IC1MUCL565N8MLOSPH4 2/3 6/30/2021 O S D, 150 S D - T N T HelaterdiscoveredintheDonorSiblingRegistrythatsomedonorshaddoensofchildrenlisted.Itwasallaboutwhatever theycouldgetawaywith,hesaidofthespermbanktowhichhedonated.Itisunfairandreprehensibletothedonorfamilies, donorsanddonorchildren.

Ms.Kramer,theregistrysfounder,saidthatonespermdonoronhersitelearnedthathehad70children.Henowkeepstrack ofthemallonanExcelspreadsheet.Everyonceinawhilehegetsanewkidortwins,shesaid.Itsoverwhelming,andnot whathesignedupfor.Hewaspromisedlownumbersofchildren.

Thefertilityindustryhaslongresistedregulation,buttheexplosionofrelatedhalfsiblingsmaychangethat.Dr.RobertG. Bryski,chairmanoftheAmericanSocietyforReproductiveMedicineethicscommittee,hadbeenskepticalthattherecouldbe donorswithmorethan100children.Butnow,hesaid,itistimetotakeanotherlookatdonorlimits.

Inthepast,whendecisionsweremadeabouthowmanychildrenshouldbeattributedtoadonor,itwasbasedonestimatesof theriskofunintendedbetweenbrothersandsisterswhocouldmeetandmarry,Dr.Bryskisaid.Ithinkthose modelswereverylimitedintheirvisionwhentheywerecreated.NowIthinkthereneedstobeareassessmentofthecriteria andthepoliciesregardingtheappropriatenumberofoffspring.

Becausethereissomuchsecrecysurroundingspermanddonations,Ms.Kramersaid,ithasbeendifficultforfamiliesof childrenbornviaspermdonationtostepforwardwiththeirconcerns.Someheterosexualcouplesnevertellachildthatheor sheistheproductofaspermdonation.

Ms.Daily,theWashingtonsocialworker,saidthatotherparentsinhersonsgrouphadbeensecretivebecauseoffearsthat theirchildrenwouldbestigmatied.Sheandotherdonorparentsarecomingforward,shesaid,becausetheyneedtostart advocatingforsomeregulation.

Expertsarenotcertainwhatitmeanstoachildtodiscoverthatheorsheisbutoneof50childrenorevenmore.Experts donttalkaboutthiswhentheycounselpeopledealingwith,Ms.Kramersaid.Howdoyoumakeconnectionswith somanysiblings?Whatdoesfamilymeantothesechildren?

://../2011/09/06//06.?=IAR0OBN5IC1MUCL565N8MLOSPH4 3/3