Professional Documents
Culture Documents
individualsfromgeneticdiscriminationinhealthinsuranceandemployment.Genetic
discriminationisthemisuseofgeneticinformation.Thisresourceprovidesanintroductionto
GINAanditsprotectionsinhealthinsuranceandemployment.Itincludesanswerstocommon
questionsandexamplestohelpyoulearn.
ThisonlineresourcewascreatedbyGeneticAlliance,theGeneticsandPublicPolicyCenterat
JohnsHopkinsUniversity,andtheNationalCoalitionforHealthProfessionalEducationin
GeneticsthroughfundingbyThePewCharitableTrusts.May2010.
GeneticInformation
Whatisgeneticinformationandwhyisitimportant?
Thegeneticinformationprotectedbythelawincludesfamilyhealthhistory,theresultsof
genetictests,theuseofgeneticcounselingandothergeneticservices,andparticipationin
geneticresearch.
Whyisgeneticinformationimportanttome?
Geneticinformationhelpsyouknowandunderstandhealthconditionsthatruninyourfamily,
aswellasyourriskfordevelopingcertainhealthconditionsorhavingachildwithcertain
conditions.Thisinformationcanhelpyoumakehealthylifestylechoicesandimportantlifeand
medicaldecisions.Italsohelpsyourdoctorinprovidingyouthebestcarepossible.
HowdoesGINAhelpme?
WithGINAsprotections,youcanfeelcomfortabletalkingaboutfamilyhealthhistorywithyour
familyandhealthcareproviders.Youmaychoosetousegenetictestingandotherservicesto
learnabouthealthriskswithoutfearofgeneticdiscrimination.
http://www.GINAHelp.org June2010
GINA&YourHealthInsurance
GINAmakesitagainstthelawforhealthinsurerstorequest,require,orusegeneticinformation
tomakedecisionsabout:
Youreligibilityforhealthinsurance
Yourhealthinsurancepremium,contributionamounts,orcoverageterms
Thismeansitisagainstthelawforyourhealthinsurertouseagenetictestresultorfamily
healthhistoryasareasontodenyyouhealthinsurance,ordecidehowmuchyoupayforyour
healthinsurance.
Inaddition,GINAmakesitagainstthelawforyourhealthinsurerto:
Considerfamilyhealthhistoryoragenetictestresultasapreexistingcondition
Askorrequirethatyouhaveagenetictest
Useanygeneticinformationtheydohavetodiscriminateagainstyou,eveniftheydid
notmeantocollectit
GINA&MyHealthInsurance(questionsandexamples)
DoesGINAapplytomyhealthinsurer?
GINAsprotectionsapplytomosthealthinsurers.GINAappliestothehealthinsuranceplanyou
receivethroughyouremployer(agroupplan)aswellashealthinsuranceyoupurchaseonyour
own(anindividualplan)foryouandyourfamily.GINAalsoappliestoMedicaresupplemental
policiesforindividualswhohaveinsurancethroughMedicare.
ThehealthinsuranceprotectionsofGINAdonotapplyto
MembersoftheUSmilitarywhoreceivetheircarethroughtheTricaremilitaryhealth
system
VeteranswhoreceivetheircarethroughtheVeteran'sAdministration
TheIndianHealthService
FederalemployeeswhogetcarethroughtheFederalEmployeesHealthBenefitsPlans
ThesegroupshavepoliciesinplacethatprovidediscriminationprotectionssimilartoGINA.
DoesGINAmeanthatahealthinsurercantraisemypremiumsordenymecoverageifIhave
alreadybeendiagnosedwithageneticcondition?
No.GINAdoesnotstophealthinsurersfrombasingtheirdecisionsabouteligibility,coverage,
orpremiumsoncurrentsymptomsordiagnosisofahealthcondition(alsoknownascurrent
healthstatusormanifestdisease).Thisistrueeveniftheconditionisageneticdiseaseor
wasdiagnosedinpartbyagenetictest.
http://www.GINAHelp.org June2010
TheMarch2010HealthReformlawwillhelpindividuals,includingthosediagnosedwith
conditions,getaccesstoinsurancecoverageforhealthcare.
Example:
HuntingtondiseaseprovidesagoodexampleforunderstandinghowGINAappliestothoseat
risktodevelopacondition,butnotthosewhoarediagnosedwithacondition.Huntington
diseaseaffectsthebrainandresultsinuncontrolledmovements,aswellasemotional(mood)
andthinking(cognition)problems.IfapersoninheritsamutationintheHuntingtondisease
gene,theywilldevelopthediseasesometimeintheirlife(usuallybyage30or40).Untilage30
or40,theymayhavenosignsofthedisease.
Thereisagenetictestthatcantellapersoniftheyinheritedagenemutationthatcauses
Huntingtondisease.Apersoncanhavethistestbeforeheorshehassymptomsofthe
condition,andiftheydo,theirinsurercannotusetheinformationtomakedecisionsabout
theireligibility,coverage,orpremiumsforhealthinsurance.Thegenetictestresultisprotected
byGINA.However,whenapersonbeginstoshowsignsandsymptomsofHuntingtondisease
andisdiagnosedwiththedisease,GINAdoesnotstophealthinsurersfromusingthat
informationtomakedecisionsaboutthepersonseligibilityorratesforhealthinsurance.
Ijusthad(orIamconsidering)agenetictest.Canmyhealthinsurerdenymehealthinsurance
orraisemypremiumsbecauseoftheresults?
No.UnderGINA,healthinsurerscannotusegeneticinformation,includingresultsofpredictive
genetictests,tomakeeligibilityandcoveragedecisions.Predictivegenetictestresultscannot
beconsideredapreexistingcondition.
Example:
Awomanhasafamilyhistoryofbreastandovariancancer.Shetalkswithherdoctorabouta
genetictesttodetermineifshehasagenemutationthatincreasesherriskofbreastand
ovariancancer.ShehastestingandlearnsshehasamutationintheBRCA1gene,confirming
herincreasedrisktodevelopthosecancers.
Herhealthinsurercannotrequest,require,orusehergenetictestresultstomakedecisions
abouthereligibilityforcoverageortheamountshepaysforherhealthinsurance.
Canhealthinsurancecompaniesdiscriminateagainstmeifafamilymemberhasbeen
diagnosedwithahealthcondition?
No.GINAmakesitagainstthelawforhealthinsurerstouseinformationaboutdiagnosed
conditionsinanindividual'sfamilymembers.
GINAdefinesfamilymemberasafirst(child,sibling,parent),second(grandchild,uncleor
aunt,nieceornephew,grandparent),third(cousin,greatgrandparents,greatgrandchildren),
orfourthdegree(secondcousin,greatgreatgrandparents,greatgreatgrandchildren)relative.
http://www.GINAHelp.org June2010
Example:
Yourdoctorasksyouabouthealthconditionsinyourfamily.Yousharethatyourmothers
mother(maternalgrandmother)diedofcoloncancer,yourmotherhasheartdisease,your
fatherandhisfatherhavehighcholesterol,andyourbrotherhashypothyroidism.Yourdoctor
willusethisinformationtohelpunderstandandtalkwithyouaboutwhatconditionsyoumay
beatincreasedrisktodevelop,andwhattodoaboutthoserisks.Thisinformationcannotbe
usedbyyourhealthinsurertodiscriminateagainstyou.
DoesGINAapplytoothertypesofinsurance?
Asofthedatethisresourcewaswritten(May2010),GINAsprotectionsforinsuranceapply
onlytohealthinsurance.Theydonotapplytolife,longtermcare,ordisabilityinsurance.Some
statelawsmayapplytothesetypesofcoverage.Checkwithyourstateinsurance
commissionersofficeformoreinformation.
GINA&MyGeneticServices(questionsandexamples)
DoesGINAmeanthatmyhealthinsurerhastopayformygenetictestorgeneticcounseling?
No.Healthinsurerscanstillmakedecisionsaboutwhetherornottheywillpayforservices
baseduponyourmedicalneedforthoseservices.
Canmyhealthinsurancecompanyaskmetohaveagenetictestorasktoseemygenetictest
results?
Ingeneral,itisagainstthelawforhealthinsurerstoaskfor,require,orobtaingenetic
informationaboutapplicantsortheindividualsthattheycover.Anexceptionisthatyour
healthinsurercanaskforgeneticinformationtomakeadecisionaboutwhetherornotthey
willpayforarequestedtest,treatment,orprocedure,inordertodeterminethemedicalneed
fortheservice.Inthesesituations,GINAonlyallowstheinsurertoaskfortheminimum
amountofinformationtheyneedtomakeadecision.Oncetheyhavetheinformation,GINA
preventsthemfromusingtheinformationtodiscriminateagainstyou.
Example:
Ifyoudecidetohaveagenetictestbecauseyouhaveafamilyhistoryofcoloncancer,your
healthinsurermayneedtoknowthatyourfamilyhistorymeetscertaincriteriainordertopay
foryourtest.
Ifyouhavethetestandarefoundtohaveamutationthatincreasesyourrisk,andyouneeda
treatmentorprocedurebasedonthetestresult,yourinsurermayaskforinformationabout
whyyouneedthetreatment.
Intheseexamples,accordingtoGINA,theinsurermayaskforonlytheminimumamountof
informationrequiredtodetermineifthetestortreatmentaremedicallynecessary.
http://www.GINAHelp.org June2010
GINA&YourJob
GINAmakesitagainstthelawforemployerstouseyourgeneticinformationinthefollowing
ways:
Tomakedecisionsabouthiring,firing,promotion,pay,privilegesorterms
Tolimit,segregate,classify,orotherwisemistreatanemployee
Thismeansitisagainstthelawforyouremployertousefamilyhealthhistoryandgenetic
testresultsinmakingdecisionsaboutyouremployment.
Itisalsoagainstthelawforanemployertorequest,require,orpurchasethegenetic
informationofapotentialorcurrentemployee,orhisorherfamilymembers.Thereareafew
exceptionstowhenanemployercanlegallyhaveyourgeneticinformation.Ifanemployerdoes
havethegeneticinformationofanemployee,theemployermustkeepitconfidentialandina
separatemedicalfile.
CommonQuestionsAboutGINAandEmployment
DoesmyemployerhavetocomplywithGINA?
GINAappliestoallemployerswith15ormoreemployees,regardlessifitisanotforprofit
organizationoracorporation.
GINAsprotectionsinemploymentdonotextendtotheUSmilitaryoremployeesofthefederal
government.In2000,PresidentBillClintonsignedExecutiveOrder13145intolaw,which
protectsfederalemployeesfromgeneticdiscriminationinemployment.TheUSmilitaryhasits
ownpoliciesinplacethatmayprotectmembersofthemilitaryfromgeneticdiscrimination.
Whenisitlegalformyemployertoknowmygeneticinformation?
TherearesomeexceptionstoGINAthatdeterminewhenanemployercanlegallyhaveyour
geneticinformation.Someofthemorecommonsituationsmayinclude:
Inadvertentknowledge:Insomecasesanemployermaylearnaboutanemployees
geneticinformationaccidentally.Ifheorsheoverhearsaconversationaboutan
employeessickparent,forexample,theemployerhasnotviolatedGINA.
Publiclyavailableinformation:Anemployermaylearnthegeneticinformationofan
employeeortheemployeesfamilymembersifitisavailableinthenewspaperorother
publiclyavailableinformationsources.Iftheemployerlearnsofanemployeesgenetic
informationthisway,theemployerhasnotviolatedGINA.
Voluntaryhealthservices:Someemployersoffervoluntaryhealthorgeneticservices,
includingemployeewellnessprograms.Ifspecificrequirementsaremetand
participationintheserviceisvoluntary,thenforms,questionnaires,orhealthcare
http://www.GINAHelp.org June2010
professionalstreatingemployeesaspartoftheservicemayrequestfamilyhealth
historyorothergeneticinformation.
FamilyandMedicalLeaveAct(FMLA):Formsthatemployeesmustfilloutaspartof
askingfortimeofffromworktocareforasickfamilymembermayincludequestions
aboutgeneticinformation.Employeesmayneedtoprovidethisinformationfor
extendedleavetobeapproved.
Inalltheaboveinstances,itisagainstthelawforemployerstousethegeneticinformation
collectedtodiscriminateagainstemployees.
Ifmyemployerfindsorcollectsmygeneticinformationlegally,whatmeasuresmustshetake
toensuremyinformationiskeptprivate?
UnderGINAandtheHealthInsurancePortabilityandAccountabilityAct(HIPAA),allmedical
informationcollectedbyanemployer,includinggeneticinformation,mustbekeptina
confidential,separatemedicalrecord.
http://www.GINAHelp.org June2010
HowGINAWorks
GINAwassignedintolawonMay21,2008byPresidentGeorgeW.Bush.Itisnowineffect.At
thetimethisresourcewaswritten(April2010),thefederalagenciesresponsibleforenforcing
thelawarefinalizingtheregulationsthatspecifyhowthelawwillbeenforced.
HowwillGINAbeenforced?
TheDepartmentofLabor,theDepartmentoftheTreasury,andtheDepartmentofHealthand
HumanServicesallhavespecificresponsibilitiesinenforcingthehealthinsuranceprotectionsof
GINA.TheEqualEmploymentOpportunityCommission(EEOC)isresponsibleforenforcingthe
employmentprotectionsofGINA.
Remediesforindividualswhofeeltheyhavebeendiscriminatedagainstineitherhealth
insuranceoremploymentincludecorrectiveactionandmonetarypenalties.UnderTitleIIof
GINA,individualsmayalsohavetherighttopursueprivatelitigation.
HowdoesGINAinteractwithstatelaw?
GINAprovidesafloororminimumlevelofprotectionagainstgeneticdiscrimination.Ifa
statehasalawagainstdiscriminationthatisstrongerthanGINA,thestatelawapplies.For
example,somestatesdontallowhealthinsurerstomakedecisionsaboutwhetherornota
personqualifiesforhealthinsuranceorhowmuchtheyshouldpayforhealthinsurancebased
uponcurrenthealthstatus.Checkwithyourstatehealthinsurancecommissionertolearn
aboutyourstatesprotectionsagainsthealthinsurancediscrimination.
GINArequiresthatstatehealthinsuranceregulationsmatchGINAsprotectionsasofMay21,
2009.IfstatesdonotofferGINAslevelofprotections,thefederalgovernmentcanstepinand
enforceGINA.
WhatifIgotagenetictestbeforeGINAwassignedintolaw,orbeforeitwentintoeffect?Is
thatgeneticinformationprotectedbyGINA?
GINAprotectsyoufromgeneticdiscriminationinemploymentandhealthinsuranceregardless
ofwhenyouhadagenetictestdone,whenyoureceivedtheresults,orwhenyouusedgenetic
counselingorothergeneticservices.
However,GINAisnotretroactive.ThismeansthatGINAdoesnotapplytoactsofdiscrimination
thatoccurredbeforeGINAwentintoeffect.
Example:
Awomanhadagenetictestthatdeterminedshehasamutationincreasingherriskforbreast
andovariancancer.Regardlessofwhenshehadthetest,ifshewerediscriminatedagainstby
herhealthinsureroremployerbeforeGINAwentintoeffect,GINAsprotectionswouldnot
http://www.GINAHelp.org June2010
apply.Howeverifthediscriminationoccurredafterthelawwasineffect,theprotections
wouldapply.
WhoshouldIcontactifIfeelIhavebeendiscriminatedagainst?
Healthinsurancediscrimination:Startwithyourstateinsurancecommissionersoffice.GINA
requiresthatstatehealthinsuranceregulationsmatchGINAsprotectionsasofMay21,2009
andthattheyenforcethelawthemselves.IfstatesfailtoprovideGINAlevelprotections,the
federalgovernmentwillenforcetheseprotectionsandfinethehealthinsurer.
Employmentdiscrimination:IndividualsfirstmustfileaclaimwiththeEqualEmployment
OpportunityCommission(EEOC)inordertolaterfileaclaiminstateorfederalcourt.TheEEOC
willassignaninvestigatortoyourcase,contactyouremployer,andattempttoresolvethe
situationthroughmediation.IftheEEOCfindsreasonablecausefordiscrimination,itwill
attempttoresolvethematterthroughinformalconciliation.Ifattheendoftheprocessa
meritoriousclaimisfoundtoexist,theEEOCwillgiveyouanoticeofRighttoSueormay
actuallyfileacivilsuitonyourbehalf.Visiteeoc.govformoreinformation.
http://www.GINAHelp.org June2010
GINATermsandDefinitions
FamilyMember
GINAdefinesfamilymemberasafirst(child,sibling,parent),second(grandchild,uncleor
aunt,nieceornephew,grandparent),third(cousin,greatgrandparents,greatgrandchildren),
orfourthdegree(secondcousin,greatgreatgrandparents,greatgreatgrandchildren)relative.
GeneticInformation
GINAdefinesgeneticinformationasincludingthefollowing:
Anindividual'sgenetictestsorthegenetictestsoftheindividual'sfamilymembers,and
themanifestationofadiseaseordisorderintheindividual'sfamilymembers
Geneticinformationalsoincludestherequestorreceiptofgeneticservicesor
participationinclinicalresearchthatincludesgeneticservices,forboththeindividual
andtheindividual'sfamilymembers
Informationregardinganindividual'ssexorageisNOTprotectedgeneticinformationunder
GINA
GeneticServices
GINAdefinesgeneticservicesasreceiptofgenetictesting,geneticcounseling,genetic
education,orparticipationinaresearchstudy.
GeneticTest
GINAdefinesagenetictestastheanalysisofhumanDNA,RNA,chromosomes,proteins,or
metabolitesthatdetectsgenotypes,mutations,orchromosomalchanges.
UnderGINA,agenetictestdoesnotincludetheanalysisofproteinsormetabolitesdirectly
relatedtothemanifestationofadiseasethatcouldreasonablybedetectedbyahealthcare
professionalwithappropriatetrainingandexpertiseinthefieldofmedicineinvolved.
ExamplesoftestscoveredbyGINA:
TestsforBRCA1/BRCA2(breastcancer)orHNPCC(coloncancer)mutations;testsfor
Huntington'sdiseasemutations,carrierscreeningforconditionssuchascysticfibrosis
andfragileXsyndrome,andclassificationsofgeneticpropertiesofanexistingtumorto
helpdeterminetreatment.Newbornscreeningtestsforgeneticconditionsarecovered
byGINA,howeverthediagnosisofthegeneticconditionfollowingconfirmatorytesting
isnotcoveredbyGINA.
ExamplesoftestsNOTcoveredbyGINA:
Routinetestssuchasroutinebloodcounts,cholesteroltests,andliverfunctiontests
http://www.GINAHelp.org June2010
ManifestDisease
InGINA,thetermmanifestdiseasemeansthatanindividualhasbeenorcouldreasonablybe
diagnosedwithadisease,disorder,orpathologicalconditionbyahealthcareprofessionalnot
basedmainlyongeneticinformation(forexample,theresultsofadiagnostictest).More
specifically,adiseaseismanifestwhenanindividualisexperiencingsignsorsymptomsofthe
condition.
AdditionalResources
AboutGINA
GINA&YouInformationSheetdevelopedbyGeneticAlliance,NationalCoalitionforHealth
ProfessionalEducationinGenetics,andTheGeneticsandPublicPolicyCenteratJohnsHopkins
University,PDFavailableonwww.GINAHelp.orgatbottomofthehomepage
AGuidetotheGeneticInformationNondiscriminationAct
http://www.geneticfairness.org/ginaresource.html
GeneticsandPublicPolicyCenterGINAResources
http://www.dnapolicy.org/gina/
EqualEmploymentOpportunityCommission(EEOC)GINAFactSheet
http://www.eeoc.gov/laws/types/genetic.cfm
NationalHumanGenomeResearchInstitute(NHGRI)GeneticDiscriminationFactSheet
http://www.genome.gov/10002328
GINAResourcesforHealthcareProviders
http://www.nchpeg.org/index.php?option=com_content&view=article&id=97&Itemid=120
StateResources
NationalConferenceofStateLegislatures(NCSL)
http://www.ncsl.org/
NationalAssociationofInsuranceCommissioners
http://www.naic.org/state_web_map.htm
http://www.GINAHelp.org June2010
TheGINALegislationandRegulations
TheGeneticInformationNondiscriminationActof2008
http://www.gpo.gov/fdsys/pkg/PLAW110publ233/pdf/PLAW110publ233.pdf
TitleI:DocumentforFederalRegulationsRegardingInsurance
http://edocket.access.gpo.gov/2009/pdf/E922504.pdf
TheDepartmentsofHealthandHumanServices,Labor,andtheTreasuryhavepublishedinthe
FederalRegisteritsproposedregulationsforTitleIoftheGeneticInformationNon
DiscriminationAct(GINA).
TitleII:DocumentforFederalRegulationsRegardingEmployment
http://edocket.access.gpo.gov/2009/pdf/E94221.pdf
TheEqualEmploymentOpportunityCommission(EEOC)haspublishedintheFederalRegister
itsproposedregulationsforTitleIIoftheGeneticInformationNonDiscriminationAct(GINA).
AboutThisResource
ThisonlineresourcewascreatedbyGeneticAlliance,theGeneticsandPublicPolicyCenterat
JohnsHopkinsUniversity,andtheNationalCoalitionforHealthProfessionalEducationin
GeneticsthroughfundingbyThePewCharitableTrusts.May2010.
OrganizationalWebsites:
GeneticAlliance
http://www.geneticalliance.org
GeneticsandPublicPolicyCenter
http://www.dnapolicy.org
NationalCoalitionforHealthProfessionalEducationinGenetics
http://www.nchpeg.org
http://www.GINAHelp.org June2010