Bethiel Araia
Senior Thesis | 2026
BethielAraia
Ms.Waring
SeniorThesis
March6,2026
SocioeconomicStatusandDemographicsofHIVVaccineStudy
Participants
Introduction
Inscientificresearch,representationinhealthcareisa highlydebatedsubject.Mostpeopleunderstandthetopicwiththe genericapproachof “everyone deserves to be included”,butfailto recognizethedepthbehinditsessentiality.Thescientificneedfor representationinmedicinecanbeexplainedbyregardingthetwo factorsof(1)EthicalResponsibilityand(2)BiologicalNecessity. Thesetwomajorcomponentscreatetheframeworkforour understandingofascientificneedforrepresentation.We understandBiologicalNecessityasthepurescience,meaningthe baselinescientificprocessesneededforthemedicinetobe successful.Forexample,ifanall-malestudygroupisusedfora vaccinetrial,butthediseasealsoaffectsfemales,theissueof
representationbecomesaBiologicalNecessity.Howmightthe studybeabletoprovetheirmedicinewillbesuccessfulonthe entireafflictedgroupifnotallarereflectedinthetestingpool? Additionally,thisnegligenceshowsafailuretoaccountforthedue diligenceexpectedofaresearcher.Wemustconsiderwhat scientistsowetothoseforwhomtheyarecreatingtreatmentsfor, tothosewhowillentrusttheirhealthandsafetyintheir innovations;thisisthematteroftheEthicalResponsibilityofa scientist.Everyonedeservestofeelthattheyhavebeenaccounted forandacknowledgedduringtheresearchdevelopmentprocess. Whetherthatmeansastudyparticipantwhohasskinastheirs,age liketheirs,orthesameaccesstohealthtreatment—everyone deservestofeelseen.
Researchcompoundsuponitselfandpublishedworksare usedasinspirationforandreferencesincontinuousstudies.When thebaselinedatarestsuponskewedmetrics—suchasnumbers applicabletoonlycertainpopulations—thestudieswhichdevelop fromthisworkservetofurtherexpandthisinequity.Inturn,this processmakesthesubjectofrepresentationinscienceacritical
matter;thelongeritremainsunchecked,willonlymagnifyits effects.
Background
Raceisamajorcontributortoone’sexperiencewithand accesstohealthcaretreatment.Theideaofracebeinga determinantofone’sexperiencesinhealthmanagementmanifests inthePregnancyRelatedMortalityRatios(PRMR)ofwomenin theUnitedStates.ThestatisticstakeninEmilyE.Petersen’sstudy ofpregnancy-linkeddeathsbetweentheyears2011and2015 revealblatantdisparitiesbetweentheMortalityRatiosofwomen oftheUnitedStatesinvaryingracialgroups.Comparedtothe PRMRofwhitewomen(13.0),thoseofBlackpopulationswere 3.3timesashighand2.5timesashighinAmericanIndian/Alaska Nativegroups.Theseastoundingratiosnarratethestoryofthe disconnectwithinthehospitalsystemwhereracialidentity managestoprevailoverthemother’shealthandsafedeliveryof thebaby(Petersen,2019).Blackwomen’sbabiesdieatrates2.5 timeshigherthanthoseofWhitewomen,andtheyare40%more likelytodiefrombreastcancer(Gomez,2019).Thesenumbersare
unacceptableandexposetheinequalitywhichscientistsmuststrive tocorrectfor;thereisnoreasonthatapatient'sracialidentity shouldinfluencetheirtreatmentorhealthoutcome.
Throughouttheprocessforresearchapproval,thereisno stoneleftunturnedwhileexaminingscientificworktomakesure alliscompliantwithregulation.Amongothercheck-ins,clinical labsfaceInstitutionalReviewBoard(IRB)approval,routine laboratoryexaminations,andscientificreviewbeforepublications.
Intheseextensiveexaminations,themainpriorityistoensurethat thelab’sproceduresareinaccordancewithscientificstandardsand therehavebeennomajorviolations.Throughoutthisdiligent process,thereisanextremelackofaccountabilityondiversity throughoutthesecheckpoints(Nephew,2021).Whilelabsare thoroughlyexaminedtoensurethatnodataorprivacyhasbeen compromised,confirmingarangeofparticipantidentitiesisnot heldtothesamestandard.AcrossnewlyapprovedFDAdrugs,itis estimatedthatone-fifthofwhichexhibitdifferencesinresponse whenexposedtodifferentracialorethnicgroups(Nephew,2021). Despitethisshockingstatistic,varietyinracialandethnicidentities
isnotcommonlyvaluedorconsideredtobeanabsoluteessential inresearchtrials.
TheBadenLab,anInfectiousDiseaselabatBrighamand Women’sHospital,runsclinicaltrialsforvariousstudies— screeningparticipants,administeringdrugs,andgatheringdata.
TheBadenLabrunsmultiplestudiesundertheHIVTrials Network(HVTN),exploringagreaterunderstandingofthedisease inpursuitofavaccineforHIV.Inpastyears,adesiretofurther understandthelab’spatientmakeuparose,fromthatgrowingneed, anintentionalfocusonthesubjectdeveloped.Thelabwasfaced withquestions,centeredaroundunderstandingwho,exactly,are ourparticipants?Wheredotheycomefrom?Howoldarethey? Whataretheirgenderidentitiesandsexualities?Howdotheyfind us,orinversely,howmightwebetterfindthem?Whyarethey here—financialreasons,orpersonalmotivations?Lacking answerstothelistofever-compilingquestions,theBadenLab decidedtodedicatespecificprojectstodevelopingagreater understandingoftheirlabwork.Duringmytimeworkingatthe lab,Ianalyzedthedemographicsandsocioeconomicstatusoftheir HIVVaccineNetworkTrialparticipants.Throughmyresearchand
ournewlygathereddata,wehopetoanswerourongoingquestions ofwhatourparticipantmakeuplookslikeregardingfactorssuchas age,ethnicity,sexuality,recruitment,andfinancialstatus.
Methods
Between2020and2021,aretrospectivestudywasheld, lookingatnumbersofpatientdemographicsof6HIVVaccine Trialsincomparisontothoseof6COVIDvaccinestudiesat BrighamandWomen’sHospital.Beingaretrospectivestudy, researchersweregivenalimitedamountofdata—confinedtothe mereinformationwhichpatientshadprovidedontheirearly consentforms.Intheirdatacollected,acrosstheresearchforboth diseases,studieswereprimarilycomposedofthosewhoareWhite, female,andnotHispanicorLatin,withtheaverageageofCOVID studypatientsrangingolderthanthatoftheHIVtrialpatients (Ramirez).Whilethesefindingsallowedanewcomprehensionof thelab’sparticipantcomposition,therestricteddatameantthatwe werelimitedinthequestionswewereabletoaskandleftuswitha newquestionofhowtheseparticipantshadbeenrecruitedinto theirstudies.
Inpursuitofagreaterunderstandingofourownstudies’ composition,inthesummerof2024,theBadenLabdevelopedan additionalquestionnairefornewrecruitsintotheHIVTrials Networkstudiestocompleteamongtheirinitialscreeningand consentforms.Thisquestionnairespecificallyaddressesthe participants’socialstatusandpotentialhardships,subjectsthatare commonlyoverlookedinscientificresearch.Askingwhetherthey haveaccesstohealthinsurance,iftheyowntheirhome,orifthey haveoneatallisimportantbecauseeachcanimpacttheperson's healthstatusandmotivationforjoiningthestudy.
Additionally,amuchgreaterlevelofanalysiswasplacedonthe economicandfinancialstatusoftheseindividualsthanwhathad beendonepreviouslybecauseofthelimiteddataavailableinthe past.Wetargetedquestionsontheirindividualandnethousehold income,theexpenseoftheirmortgageorrent,andhowexactly theyobtaintheirincome(employment,retirement,welfare,etc.).
However,thefocusofmyworkwasdedicatedtoquestionno.9, askinghowparticipantshadheardaboutthestudy.The effectivenessofaresearchlab’srecruitmenttechniquesformtheir patientdemographicandeconomicmakeupand,dependingonthe communitiesbeingdrawnin,mightimpacttheirresearchfindings (Nephew,2021).Inturn,wewanttoaddressourownrecruitment; weemployawidevarietyofmethods,physicalanddigital,to connectwithaudiences.Arespecificdemographic/socioeconomic variablesassociatedwithatypeofrecruitmentmethod?The makeupofourtrialsshouldalwaysreflectthetruecompositionof thoseafflictedwiththediseaseandwearealwaysthinkingabout outreach—howshouldweimproveourrecruitmentprocessesto includearepresentativepopulation?Finally,ouroverarching
question,isthereaneedtorespondtothenewinformationwhich wehaveobtainedregardingourrecruitmentmethods,andifso, howmightwegoaboutit?
DataAnalysis
Inordertoanalyzehowthelab’sdemographicmakeuphas developedovertime,wecomparedthefindingsofthepast retrospectivestudytothenewquestionnairedata.Inlookingat previousdata,weareabletosetabaselineofhowourcomposition hasshiftedoverrecentyearsandunderstandtheevolutionofour participantmakeup.Inturn,weareabletoidentifypatternsinour dataandrecognizewhencertainfactorsremainconsistent.
Image 2: ComparisonofRetrospectiveData(LeftColumn)to
QuestionnaireData(RightColumn)
Betweenthepastretrospectivestudyandthenewquestionnaire data,weweresurprisedtoseethelevelofconsistencyamongstthe data.Betweenthepatientslookedatintheretrospectivestudyand thoseregardedinthequestionnaire,theprimarycompositionofthe groupshasremainedconsistent.Inbothrounds,wehaveseenthe makeuptobeprimarilycomposedofthosewhoareWhite,Female, Straight/Heterosexual,nonHispanicorLatin,carryingthe educationlevelofanUndergraduatecollegedegree.Whilethese numbersmightindicateastrongretentionofonepool,itis importanttonotbecomestationaryinrecruitment. Overthe4-5 yearsbetweenthesestudies,weshouldexpectanevenmoderate shiftinourcomposition.Theconsistencyinitselftellsanarrative aboutthecertaingenreofpeopleourstudiesconsistentlydrawin. Havingthispopulationisnottheproblem,ratheritisthe proportionofdominancewhichthisgroupholdsthatraises concern.Outofthequestionnaire’s74responses,ashocking56of theparticipantswereWhite—75%oftheentiretyofthegroup. Thisleavesamere18spotsthatareheldbythosewhoare
Black/AfricanAmerican,Asian,orMultiracialandcompletely zerocomingfromAmericanIndianorAlaskaNativepopulations.
Whenwecriticisethefindings,it’snotthatthereisanissuewith thepopulationswedohave,butanissuewithignoringoursevere lackinthosewedonot.Asweoutlinedinthesecondfactorofthe scientificneedforrepresentation,BiologicalNecessity,ifwefail toaccountforallofourpopulationintheresearchprocess,thenwe cannotbesureourproductwillremaineffectivewhenappliedto allafflictedcommunities.Undertheestimatethatone-fifthofFDA approveddrugsexhibitdifferencesinresponsewhenusedby differentracialorethnicgroups,thendisparitieslikethe0 AmericanIndianorAlaskaNativepopulationsincomparisonto the56Whitepatientsbecomesasevereoversight(Nephew,2021).
Thisdatademonstratesthatthevastmajorityofthelabparticipants carryneartotalaccesstohealthinsurance.70ofthe74 questionnaireresponsesconfirmedtheiraccesstohealthinsurance, anoverallpercentageof95%.
Streams of Income
Table 4: NumberTablebyIncomeStreams
Whetheritisthroughoneormoreoccupations,themajority ofthelab’sHVTNparticipantscarryastreamofconsistent income.Veryfewoftherespondentsreportedthattheyrequired publicassistance,meaningsomegovernmentassistance,or declaredthemselvestobecurrentlyunemployed.
Table 5: NumberTablebyHVTNHealthInsurance
Table5indicatesthatparticipantsmostcommonlyearnayearly incomethatrangesbetween$50,000and$74,999.Outsideofthis range,mostofthequestionnaireparticipantshaveanincomethat fallsbelowthehighlightedbracket,with21oftherespondents makingayearlysalarygreaterthanand32respondentsmakingan annualincomelessthan$50,000-$74,999.
Demographic&SocioeconomicFactorDiscussion
Healthinsuranceisimportantbecauseitcancarryveryreal implicationsonaperson’saccesstoroutinemedicaltreatment, theircomfortwithdoctorsandhospitals,andwillingnesstofollow theirprescribedroutines.Withouthealthinsurance,peoplecarry
fearthatanytreatmentcanincurextremefinancialburdensandare likelytodelayvisitswhichwouldprovidepreventativecarefor futurediseases(LegalClarity,2025).Additionally,insurance heightensaperson’sawarenessoftheirownhealthneedswhile motivatingthemtoexplorenewresourcescoveredbytheircare plans(HealthCare.gov,2018)(AmericanHospitalAssociation, 2019).Becauseofthisunfortunatereality,itmakesitsignificantly moreimportantthatthesteepmajorityofparticipantsinourlab haveaccesstohealthinsurance.
InthestateofMassachusetts,theminimumwageformost workersis$15.00dollarsformostemployeeswiththeexceptionof $6.75forserviceworkers(Mass.gov,2025).Underminimum wage,Massachusettsworkers'incomesamasstoanaveragesalary around$30,000(MinimumWage.org,2021).Mostcommonly,our HVTNparticipantshaveayearlyincomebetween$50,000and $74,999,withthesecondmostpopularincomerangeyielding between$35,000and$49,999.
Itiscriticaltoanalyzetheparticipants’incomestreams becauseaperson’sfinancescanlargelyinfluencetheirreasonsfor joiningthelabandwantingtoparticipateinresearch.Inpaid
researchstudies,incomestreamsmustberegardedbecause involvingmoneymightinfluencetheparticipantsdesireto participateinthetrials.Infact,bothpayingparticipantstoomuch andtoolittlefortheirinvolvementishighlydebated,sparking conversationsabouteithercompromisinginformedconsentor takingadvantageoftheirparticipation(Resnik,2019).Inourlab, nearlyeveryquestionnairerespondenthasatleastonestreamof income,indicatingalesslikelihoodoftheirinvolvementforpurely financialreasons.
RecruitmentMethods+Analysis
TheBadenLabemploysawidevarietyofrecruitment methodstodrawnewparticipantsintosupportinginnovative researchstudiesbyparticipatingassubjects.Whetherusing physicalpamphlets,onlineresources,orface-to-faceoutreach,the labisdedicatedtotappingintoasmanycommunitiesaspossible. Whetheritisthroughsocialmedia,rally,oranonlinewebsite,an overalllargemajorityoftheparticipantsfindourstudiesthrough somekindofonlineresource.Additionally,doctorsandresearch assistantstravelaroundtheNewEnglandregionattendingpride
eventstoshareinformationabouttheworkbeingdoneandstudies thateventgoersmightbeabletoparticipateinthemselves.This outreacheffortmakesjoiningactivestudiesfarmoreapproachable foraverageaudiences,asmosthavenoavenuestobeinformed aboutwhereandwhenstudiesareheld,orhowtheymightindicate interest.Unfortunately,notalllabsareabletoputinthislevelof effortintotheirrecruiting,limitedbytimeandbudget constraints.
Table 6: NumberTablebyRecruitmentMethods
Amongthe74HVTNpatientsonthequestionnaire,Rally wasthemosteffectiverecruitmentsource,withaboutaquarterof thegroupcomingintothelabthroughthewebsite.Rallyisan onlinedatabasewhereBrighamandWomen’slabsareabletopost theirclinicalresearchtrialsthatareacceptingnewparticipantsand effectivelyadvertiseonalarge-scaleplatform.There,prospective participantsareabletoeasilyfilterthroughthefactorswhich currentstudiesaresearchingfor.Forexample,websitegoersare abletofilterbystudiesregardingsubjectsofinterest,suchas researchfocusingonmentalhealth,COVID-19,asthma,andcystic fibrosis.Theopportunitytoaccessresearchandparticipatein studiesshouldnotbealuxury onlyreservedforthosewith expensive,highqualityhealthcare.DatabaseslikeRallymakeit easyandaccommodatingforpeoplewhomightnothaveaccessto aprimarycareprovider,orareonlyabletoseeonewhoisnot knowledgeableaboutopportunitiessuchasthese,tofind informationforthemselvesaboutstudiesorregisterforameeting. Dependingonthestudies’diseaseoffocus,aspotinoneofthese clinicaltrialscanbehighlycovetedandprovidepotentially life-savingtreatment.Togowithoutknowledgeaboutcurrenttrials
beingrunmightmeantomissoutonopportunitieswhich,butto neverevenhavethechancetoapply.Recruitmentisimportant becauseitiswhererepresentationbeginsinresearch.Openingup informationtoawidepopulationspreadsknowledgeaboutthe studiesandincreasesthepool,makingiteasierforlabstoforma morediversemakeupbecauseofthegreaterrangetoselectfrom. Rallylevelstheplayingfield;aparticipantdoesnotneedmoneyor theprivilegeofanesteemeddoctortoknowaboutandbeinvolved inclinicalresearchtrials.
RecruitmentandDemographicFactorsComparison
Inordertoanswerthequestionsregardingtheeffectiveness ofourcurrentrecruitmenttechniques,Icreateddatatablescrossing eachmethodwiththedemographicfactorscollectedbythe questionnaireinordertoseethedistribution.Forexample,when crossingrecruitmentwiththedemographicvariableofgender identity,weareabletoevaluatethedivisionofgenderidentity acrossourmethodsandidentifypatternsbetweenthedemographic andparticularrecruitmenttechniques.
Recruitment and Gender Identity
Table 7: ComparisonofRecruitmentSources(LeftColumn)to
DemographicVariableofGenderIdentity
Consistentwiththegenderdistributionfindingsinimage3, thelab’srecruitmentisfemaledominatedthroughoutmostallof thesources.Fromourquestionnairefindings,weknowthatthelab leansprimarilyfemale,with66.2%oftheparticipantsidentifying asfemaleatbirth—anumberthathasgrownfromthe58%ofthe retrospectivestudy’sfindings.
Table 8: ComparisonofRecruitmentSources(LeftColumn)to
DemographicVariableofRace(RightColumn)
Noticethatinallbutoneoftherecruitmentsources,White isconsistentlytheracialgroupwhichbringsinthegreatestnumber ofpeople.BecauseoftheoverallproportionofWhiteparticipants comparedtothoseofotherraces,somesortofrecruitmentpattern wastobeexpected,butthenearcompletedominanceofevery methodisunforeseen.Analternativesituationcouldhavebeenif thereissomeassociationbetweenaparticularracialgroupand specificrecruitmentmethods,thenwecoulddedicateadditional
resourcestoexpandingeffortsandmaximizingtheircapabilities.
FromImage5,wecanunderstandthatWhiteparticipantstruly carryanoverarchingholdoverthelab’srecruitment,andevenin Rally,ourgreatestrecruitmentsource,15ofthe18participantsare White.
Recruitment and Sexual Orientation
Table 9: ComparisonofRecruitmentSources(LeftColumn)to DemographicVariableofSexualOrientation(RightColumn)
Althoughheterosexual/straightisthemostcommon sexualityfoundamongthequestionnaireparticipants,Image6 showsthatthenumberofparticipantswhoidentifyasheterosexual
doesnotcompletelyoverpowerthoseofothersexualitygroups.As seeninthewomangenderidentityandWhiterace,dominanceofa tokendemographicgroupoverthelabmakeupisanunfortunate patternseenintheanalysisofotherdemographicfactors.However, 28ofthe74questionnaireparticipants,37.8%overall,identified themselvestobestraight—afarmoreregulatedproportionin regardstoothersexualidentities.
Recruitment and Education Level
Table 10: ComparisonofRecruitmentSources(LeftColumn)to DemographicVariableofHighestCompletedLevelofEducation (RightColumn)
Thistableshowsanoverallevendistributionofeducation levelacrossrecruitmentsources,indicatingthatthereislittletono associationbetweenspecificsourcesandparticularlyeducatedor uneducatedcommunities.Thisdatashowsthatourrecruitment sourcesareeffectiveinreachingallpopulationsandnoparticular sourceislimitedtocertaincommunities.
RecruitmentDiscussion
Nowthatwehavecollectedandanalyzedthequestionnaire data,weneedtoreturntotheoriginalquestionsaboutrecruitment. Wehadquestionedwhatpatternswouldbecomeapparentinour recruitmentdataandhowtheymightbeexplained.Fromanalyzing recruitmentanddemographicfactorsinthenumbertableanalysis, wenowareabletorecognizethesheerextentofdisparityinterms ofracedistributionamongstourparticipants.Astaggering75%of the74HVTNstudyparticipantswhocompletedthequestionnaire areWhite—apercentagethathasonlyrisensincetheprevious 72%Whitethatwasreportedinthe2020/2021retrospectivestudy. Nowthatwehavecollectedthenecessarydataanddedicated ourselvestounderstandingthelab’srecruitmentsuccessesand
shortcomings,weneedtoproceed.Wemustnotsettlewithmere recognitionoftheproblemswefacethenturnablindeye; disparitiesmustbeaddressedandcorrectedfor.Weunderstandthe scientificneedforrepresentationthroughthelensesofEthical ResponsibilityandBiologicalNecessity,butfromthesefindings, weappeartobelackingonbothfronts.Inadreamworld,areallife patienttakingaparticularmedicineshouldbeabletolookatthe researchparticipants’informationandseetheiridentityreflectedin thepool.IfanAmericanIndianorAlaskanNativewastolookat thisdataandseethatofthe74HVTNparticipants,notoneofthem sharedtheirracialidentity,oraBlack/AfricanAmericansawthey madeup9%ofthelab’spopulationincomparisontothe75%of Whitegroups,theyareunlikelytofeelthatway.
Onemajorsuccessinthelab’srecruitmentisthe distributionineducationlevelacrossrecruitmentsources.The highestlevelofeducationwhichapersonachievescanhavevery realimplicationsintheirlifeoutcomes,impactingtheiroverall healthandlifeexpectations(Zajacova,2018).Thecomparisonof recruitmentandeducationalattainmentisimportantbecauseyour educationcanalsolimityourknowledgeoforaccesstoresources
forresearchstudieslikeours. Despitethewidearrayofmethods, thereisnoparticularsourceinwhichsolelythosewhoareeither extremelyhighlyeducatedorpeoplewhohavelesseducational achievementareclustered.Becauseofthisrange,throughoutall therecruitmentmethods,thereisarelativelyhighdiversityof educationlevel.Fromprideevents,werecruitboththosewhoare HighSchoolgraduatesandwhocarryaBachelor'sdegree.This phenomenoncanbeseeninRally,whereparticipantscomefrom fivedifferenteducationalbackgrounds,butalsoinface-to-faceand printadvertising,wheretheycarryfourvaryinglevelsof education.ThisoverarchingdiversityshowsthatdespiteRally beingestablishedasthesourcewiththelargestoverallnumberof recruits,ourothersourcesshouldnotbeoverlooked.
Limitations
While74participantsisastrongnumberwhencompleting ourlarge-scaleoverallanalyses,oncewebegintoanalyzethe specificsandcrossanalyzebetweendemographicfactorsand recruitmentsources,asdoneintheDataAnalysissection,the collecteddataisgreatlyimpactedbythelimitedpoolsize.For
example,eventhoughtheonlyparticipantwhoreported discoveringthelabthroughsomeGoogleplatformhasan educationlevelofaMaster’sdegree,itdoesnotnecessarilymean thatwouldremainthetruetrendwithanexpandeddataset. Additionally,becauseofthedominanceofWhitepatientsinthe lab,thecollecteddatawhenwecompareracetorecruitment methodisgreatlyimpactedbythelargeproportionofWhitesin comparisontothosewhoreportotherraces.Whitecametobethe mostcommonraceinthirteenofthefourteenrecruitmentmethods whichthetablesfeature.Whileourdatareportsthatallfourofthe participantsrecruitedthroughInstagramareWhite,thisdoesnot leadtotheconclusionthatthoseofotherracesneverusethatsame platform,andmuchratherreflectstheeffectsofthenumerical differencesbetweenracesratherthananysubstantialrecruitment trends.ThesheersizeoftheHVTNpoolwhohavecompletedthe questionnaireinthepastyearsetsanumericallimitationonthe rangeofdataandaffectsthereasonableconclusionswhichcanbe madeuponitsfindings.
Intermsofcontinuingandexpandingthisresearch,a greatercollectionofdatawouldbehighlybeneficialin contextualizingthemagnitudeofthefindings.Withalargersetof patientinformation,wewouldbeabletoanalyzethedatamore effectivelyaswecouldestablishmoreconcreteresolutionsfrom thefindings.AsdiscussedinourLimitations,becauseofthe relativelysmallcompilationofpatientdatacurrentlyavailable,we struggletoidentifydefinitiveconclusions.Anotheranglewhich couldbeacuriousdevelopmentofthisstudymightbetoanalyze theparticipantdemographicandsocioeconomicmakeupfrom otherHVTNstudiesacrossAmericatoseeifthetrendswehave identifiedarereoccurringorgeographicallyinfluencedbythe regionalpopulations.
Conclusion
Thisquestionnairedataanalysisisnotintendedto demonstrateanutmostexampleofwhatotherresearchstudies shouldaimtoreplicate,buttoshowourintentionalityin(making up)wherewecurrentlylack.Advancementbeginswithaccepting
whatissuccessfulandwelcomingwhatneedscorrection.Negative datadoesnotsignifyanoverallfailure,itindicatesroomfor improvementandhighlightswherewecouldreviseourcurrent techniques.Whilethelabneedstoimproveontheracialand genderdistributionacrossrecruitment,thedatademonstrates extremesuccesswhenevaluatingtheparticipants’educationlevel andsexualorientation.Whenresearchstudieslackconsiderationof socioeconomicstatusanddemographicsoftheirparticipants,they becomecomplacentwiththecurrentandareunwillingtopushin ordertoachievewhatcouldbe.Asresearchers,thereisa BiologicalNecessityandEthicalResponsibilitytobemindfulof thedemographiccompositionofthelab.Wemustnotforgetour obligationtothereal-worldpatients,everyonedeservestofeelthat theyhavebeenaccountedforduringtheresearchdevelopment process.Theremaybealackofsystematicaccountabilityfor diversity,butwhenpushingscientificinnovation,wemusthold ourselvesaccountable.
Acknowledgements
IwouldliketothankDr.LindsayBaden,Dr.Amy Sherman,andeveryoneoftheBrighamandWomen’sBadenLab fortheirsupportandguidancethroughoutmycompletionofthis project.
References
Gomez,L.E.,&Bernet,P.(2019).DiversityImproves PerformanceandOutcomes. Journal of the National Medical Association, 111(4),383–392. https://doi.org/10.1016/j.jnma.2019.01.006 HealthCare.gov.(2018).SeeHowHealthInsuranceCoverage ProtectsYou.RetrievedfromHealthCare.govwebsite: https://www.healthcare.gov/why-coverage-is-important/cov erage-protects-you/
LezoRamirez,D.,Koleske,E.,Ometoruwa,O.,ParkChang,J.B., Kanwal,U.,Morreale,N.,…Walsh,S.R.(2024).
EvaluatingenrollmentandrepresentationinCOVID-19and HIVvaccineclinicaltrials. Frontiers in Public Health, 12. https://doi.org/10.3389/fpubh.2024.1411970
Massachusettslawaboutminimumwage.(2025,January5).
RetrievedfromMass.govwebsite:
https://www.mass.gov/info-details/massachusetts-law-about -minimum-wage MassachusettsMinimumWage2021-Minimum-Wage.org.(n.d.).
Retrievedfromwww.minimum-wage.orgwebsite:
https://www.minimum-wage.org/massachusetts
Nephew,L.D.(2021).Accountabilityinclinicaltrialdiversity:
Thebuckstopswhere? EClinicalMedicine, 36,100906.
https://doi.org/10.1016/j.eclinm.2021.100906
Petersen,E.E.,Davis,N.L.,Goodman,D.,Cox,S.,Mayes,N.,
Johnston,E.,…Barfield,W.(2019).VitalSigns: Pregnancy-RelatedDeaths,UnitedStates,2011–2015,and StrategiesforPrevention,13States,2013–2017. MMWR.
Morbidity and Mortality Weekly Report, 68(18).
https://doi.org/10.15585/mmwr.mm6818e1
Resnik,D.B.(2019).ArePaymentstoHumanResearchSubjects
EthicallySuspect? Journal of Clinical Research Best Practices, 15(6),2374.Retrievedfrom
https://pmc.ncbi.nlm.nih.gov/articles/PMC7059779/
TheImportanceofHealthCoverage.(2019,October).Retrieved fromAmericanHospitalAssociationwebsite:
https://www.aha.org/system/files/media/file/2019/10/report -importance-of-health-coverage_1.pdf
WhyDoWeNeedHealthInsurance?KeyReasonsandBenefits
Explained.(2025,March15).RetrievedfromLegalClarity website: https://legalclarity.org/why-do-we-need-health-insurance-k ey-reasons-and-benefits-explained/ Zajacova,A.,&Lawrence,E.M.(2018).TheRelationship betweenEducationandHealth:ReducingDisparities
throughaContextualApproach. Annual Review of Public Health, 39(1),273–289.NCBI.
https://doi.org/10.1146/annurev-publhealth-031816-044628