TheGeneticInformationNondiscriminationActof2008(GINA)isafederallawthatprotects

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.

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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.

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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.

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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.

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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

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professionalstreatingemployeesaspartoftheservicemayrequestfamilyhealth
historyorothergeneticinformation.
FamilyandMedicalLeaveAct(FMLA):Formsthatemployeesmustfilloutaspartof
askingfortimeofffromworktocareforasickfamilymembermayincludequestions
aboutgeneticinformation.Employeesmayneedtoprovidethisinformationfor
extendedleavetobeapproved.

Inalltheaboveinstances,itisagainstthelawforemployerstousethegeneticinformation
collectedtodiscriminateagainstemployees.

Ifmyemployerfindsorcollectsmygeneticinformationlegally,whatmeasuresmustshetake
toensuremyinformationiskeptprivate?
UnderGINAandtheHealthInsurancePortabilityandAccountabilityAct(HIPAA),allmedical
informationcollectedbyanemployer,includinggeneticinformation,mustbekeptina
confidential,separatemedicalrecord.

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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

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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.

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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

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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

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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