*LRB10417552BDA30980b*WEST HB4897VIRGINIA 104THLEGISLATURE GENERALREGULAR ASSEMBLYSESSION StateIntroduced ofHouse IllinoisBill and5110 2026By HB4897Delegate byYoung Rep.[Introduced January 25, 2024;

NabeelaReferred Syedto SYNOPSISthe ASCommittee INTRODUCED:on Health and Human Resources then the Judiciary Intr HB 2024R2281 A BILL to amend the Code of West Virginia, 1931, as amended, by adding thereto a new article, designated §16-67-1, §16-67-2, §16-67-3, and §16-67-4, all relating to creating the Genetic Information Privacy Act;

ILCSand 513/20to Amendsprovide guidelines for the Geneticcollection, Informationstorage, Privacyand Act.protection of privacy with concern to genetic material and information.

RemovesBe languageit exemptingenacted insurersby thatthe areLegislature issuingof aWest long-termVirginia: care policy from specified provisions.

ProvidesARTICLE that,67. with regard to any policy, contract, or plan offered, entered into, issued, amended, or renewed on or after January 1, by a health insurer, life insurer, disability insurer, or long-term care insurer authorized to transact insurance in this State, a health insurer, life insurer, disability insurer, or long-term care insurer may not:

(1)GENETIC cancel,INFORMATION limit,PRIVACY orACT. deny coverage or establish differentials in premium rates based on a person's genetic information;

or§16-67-1. (2) require or solicit an individual's genetic information, use an individual's genetic test results, or consider an individual's decisions or actions relating to genetic information or a genetic test in any manner for any insurance purpose.

ProvidesDefinitions. that the provisions may not be construed as:

(1)(a) preventingThis aarticle lifeshall insurer,be disabilityknown, insurer,and ormay long-termbe carecited, insurer from accessing an individual's medical record as partthe ofGenetic anInformation application;Privacy Act.

or(b) (2)For prohibitingpurposes aof lifethis insurer,article, disability insurer, or long-term care insurer from considering a clinical diagnosis, such as a manifest disease or disorder, included in an individual's medical record for insurance purposes to the extentfollowing otherwisedefinitions allowableapply: by law.

Effective(1) July"Biological 1,sample" 2026.means any material part of the human, discharge therefrom, or derivative thereof, such as tissue, blood, urine, or saliva, known to contain deoxyribonucleic acid (DNA).

LRB104(2) 17552"Consumer" BDAmeans 30980an bindividual Awho BILLis FORa HB4897resident LRB104of 17552this BDAstate. 30980 b AN ACT concerning health.

Be(3) it"Direct-to-consumer enactedgenetic bytesting thecompany" Peopleor of"company" themeans Statean ofentity Illinois,that: represented in the General Assembly:

Section(A) 5.Offers consumer genetic testing products or services directly to a consumer;

Theor Genetic(B) InformationCollects, Privacyuses, Actor isanalyzes amendedgenetic bydata changingthat Sectionresulted 20from asa follows:direct-to-consumer genetic testing product or service and was provided to the company by a consumer.

(410(4) ILCS"Direct-to-consumer 513/20)genetic Sec.testing company" does not include any entity only when they are engaged in collecting, using, or analyzing genetic data or biological samples in the context of research, as defined in 45 C.F.R sec.

20.164.501, conducted in accordance with the Federal Policy for the Protection of Human Subjects, 45 C.F.R.

Usept. of genetic testing information for insurance purposes.

(a)46, Anthe insurerGood mayClinical notPractice seekGuideline informationissued derivedby fromthe geneticInternational testingCouncil for useHarmonisation, inor connectionthe withUnited aStates policyFood and Drug Administration Policy for the Protection of accidentHuman andSubjects healthunder insurance.21 C.F.R.

Exceptpts. as provided in subsection (c), an insurer that receives information derived from genetic testing, regardless of the source of that information, may not use the information for a nontherapeutic purpose as it relates to a policy of accident and health insurance.

(b)50 Anand insurer56; shall not use or disclose protected health information that is genetic information for underwriting purposes.

For(5) purposes"Express ofconsent" thismeans Section,a "underwritingconsumer's purposes"affirmative means,response withto respecta toclear, anmeaningful, insurer:and prominent notice regarding the collection, use, or disclosure of genetic data for a specific purpose.

(1)1 rulesIntr for,HB or2024R2281 determination(6) of,"Genetic eligibilitydata" (includingmeans enrollmentany anddata, continuedregardless eligibility)of for,its orformat, determinationthat of,concerns benefits under the plan, coverage, or HB4897 - 2 - LRB104 17552 BDA 30980 b policy (including changes in deductibles or other cost-sharing mechanisms in return for activities such as completing a healthconsumer's riskgenetic assessmentcharacteristics. or participating in a wellness program);

(2)(A) the"Genetic computationdata" ofincludes, premiumbut oris contributionnot amountslimited underto: the plan, coverage, or policy (including discounts, rebates, payments in kind, or other premium differential mechanisms in return for activities, such as completing a health risk assessment or participating in a wellness program);

(3)(i) theRaw applicationsequence ofdata anythat pre-existingresult conditionfrom exclusionsequencing underof thea plan,consumer's coverage,complete extracted or policy;a portion of the extracted DNA;

and(ii) (4)Genotypic otherand activitiesphenotypic relatedinformation tothat theresults creation,from renewal,analyzing orthe replacementraw ofsequence adata; contract of health insurance or health benefits.

"Underwritingand purposes"(iii) doesSelf-reported nothealth includeinformation determinationsthat ofa medicalconsumer appropriatenesssubmits whereto ana individualcompany seeksregarding athe benefitconsumer's underhealth theconditions plan,and coverage,that is used for scientific research or policy.product development and analyzed in connection with the consumer's raw sequence data.

This(B) subsection"Genetic (b)data" does not applyinclude todeidentified insurersdata. that are issuing a long-term care policy, excluding a nursing home fixed indemnity plan.

(c)For Anpurposes insurerof maythis considersubsection, the"deidentified resultsdata" ofmeans geneticdata testingthat incannot connectionreasonably withbe aused policyto ofinfer accidentinformation andabout, healthor insuranceotherwise ifbe thelinked individualto, voluntarilyan submitsidentifiable theconsumer, results and thethat resultsis aresubject favorableto: to the individual.

(d)(i) AnAdministrative insurerand thattechnical possessesmeasures informationto derivedensure fromthat HB4897the -data 3cannot -be LRB104associated 17552with BDA 30980 b genetic testing may not release the information to a thirdparticular party,consumer; except as specified in this Act.

(e)(ii) APublic companycommitment providingby direct-to-consumerthe commercialcompany geneticto testingmaintain isand prohibiteduse fromdata sharingin anydeidentified geneticform testand informationnot orattempt otherto personallyreidentify identifiabledata; information about a consumer with any health or life insurance company without written consent from the consumer.

(f)and A(iii) healthLegally insurer,enforceable lifecontractual insurer,obligations disabilitythat insurer,prohibit orany long-termrecipients careof insurerthe authorizeddata tofrom transactattempting insuranceto inreidentify thisthe Statedata. may not:

(1)(7) cancel,"Genetic limit,testing" ormeans denyany coveragelaboratory ortest establishof differentialsa inconsumer's premiumcomplete ratesDNA, basedregions onof geneticDNA, informationchromosomes, collected,genes, used, or storedgene forproducts healthto caredetermine treatment;the presence of genetic characteristics of a consumer.

or(8) (2)"Person" requiremeans or solicit an individual'sindividual, geneticpartnership, information,corporation, useassociation, anbusiness, individual'sbusiness genetictrust, testor results,legal orrepresentative considerof an individual'sorganization. decisions or actions relating to genetic information or a genetic test in any manner for any insurance purpose.

This§16-67-2. subsection applies to any policy, contract, or plan that is offered, entered into, issued, amended, or renewed on or after January 1, 2027 by a health insurer, life insurer, disability insurer, or long-term care insurer authorized to transact insurance in this State.

(g)Collection Nothingand inUse thisof SectionGenetic mayData. be construed as:

(1)(a) preventingTo asafeguard lifethe insurer,privacy, disabilityconfidentiality, insurer,security, orand HB4897integrity -of 4a -consumer's LRB104genetic 175522 BDAIntr 30980HB b2024R2281 long-termdata, carea insurerdirect-to-consumer fromgenetic accessingtesting ancompany individual'sshall: medical record as part of an application;

or(1) (2)Provide prohibitingclear aand lifecomplete insurer,information disabilityregarding insurer,the orcompany's long-termpolicies careand insurerprocedures fromfor consideringcollection, ause, clinical diagnosis, such as a manifest disease or disorder,disclosure includedof ingenetic andata individual'sby medicalmaking recordavailable for insurance purposes to thea extentconsumer: otherwise allowable by law.

(Source:(A) A high-level privacy policy overview that includes basic, essential information about the company's collection, use, or disclosure of genetic data;

P.A.and (B) A prominent, publicly available privacy notice that includes, at a minimum, information about the company's data collection, consent, use, access, disclosure, transfer, security, and retention and deletion practices;