For peo­ple with exten­sive fam­ily his­to­ries of can­cer, genetic tests can lit­er­ally be a life­saver. More than 1,500 genetic tests are avail­able today, and many can be used to con­firm whether cur­rently healthy peo­ple are car­ri­ers of cer­tain genetic muta­tions that may one day cause can­cer. If a sus­pected gene muta­tion is found, per­son­al­ized screen­ing and can­cer pre­ven­tion rec­om­men­da­tions can be made in effort to pre­vent can­cer from devel­op­ing or catch it early while it’s eas­ier to treat.

But it’s not always that sim­ple. Once genetic infor­ma­tion is dis­cov­ered, it becomes part of a person’s med­ical record. Amer­i­cans had legit­i­mate fears about that infor­ma­tion being used to deny them health insur­ance or employ­ment. So in 2008, the Genetic Infor­ma­tion and Nondis­crim­i­na­tion Act (GINA) was signed into law. In their arti­cle in the June 2011 Clin­i­cal Jour­nal of Oncol­ogy Nurs­ing, Steck and Eggert described the his­tory of genetic leg­is­la­tion lead­ing up to GINA and how the law pro­tects patients.

Back­ground

Genetic dis­crim­i­na­tion is not with­out prece­dent. Employ­ers have used genetic infor­ma­tion to deny employ­ment, dis­charge employ­ees, and deny work­ers’ com­pen­sa­tion ben­e­fits. Health insur­ers have used genetic test results to try to prove that a newly diag­nosed genetic dis­ease was a pre­ex­ist­ing condition.

Although many U.S. states have indi­vid­ual genetic infor­ma­tion pri­vacy laws, 18 have no laws at all. In addi­tion, laws can vary from state to state, which can affect peo­ple who are relo­cat­ing or seek­ing treat­ment in nearby states. A com­plete table of each state’s laws can be found at www​.ncsl​.org/​d​e​f​a​u​l​t​.​a​s​p​x​?​t​abid=14280.

Fed­eral leg­is­la­tors passed the Health Insur­ance Porta­bil­ity and Account­abil­ity Act in 1996. Although that law improved patient pri­vacy, it did not pro­hibit health insur­ers from requir­ing genetic test­ing or from deny­ing cov­er­age based on genetic information.

Then, in 2008, GINA was signed into law, mak­ing it ille­gal for health insur­ers or employ­ers to dis­crim­i­nate against indi­vid­u­als based on their genetic infor­ma­tion. GINA applies to all employ­ers regard­less of the num­ber of employ­ees, unlike the Afford­able Care Act which is only for employ­ers with more than 15 employ­ees. How­ever, it does not pro­tect an indi­vid­ual from dis­crim­i­na­tion based on genetic infor­ma­tion when qual­i­fy­ing for life, dis­abil­ity, and long-​​term care insur­ance. The law took effect in May 2009 for health insur­ers and Novem­ber 2009 for employers.

How Does GINA Pro­tect Patients?

GINA addresses four spe­cific con­cerns: pri­vacy of health records, required pre-​​employment genetic test­ing, denial or dis­con­tin­u­a­tion of insur­ance cov­er­age or employ­ment based on mis­in­ter­pre­ta­tion of genetic infor­ma­tion, and exclu­sion of insur­ance cov­er­age for untested fam­ily mem­bers. Here is what the law does and does not cover.

Health insur­ance eli­gi­bil­ity and pre­mi­ums: GINA pro­hibits health insur­ers from deny­ing cov­er­age or increas­ing pre­mi­ums based on an individual’s or fam­ily member’s genetic infor­ma­tion. It does not affect cov­er­age or pre­mi­ums based on indi­vid­u­als’ cur­rent health status.

Requir­ing genetic tests (insur­ers): GINA pro­hibits health insur­ers from requir­ing or request­ing that patients receive genetic test­ing. It does not pre­vent health­care providers from request­ing genetic tests for their patients.

Requir­ing genetic tests (employ­ers): GINA pro­hibits employ­ers from request­ing or requir­ing genetic test­ing or pur­chas­ing the results of employ­ees’ or fam­ily mem­bers’ genetic tests. It does not pre­vent employ­ers from col­lect­ing genetic infor­ma­tion for toxic-​​monitoring pro­grams, well­ness pro­grams, or state and fam­ily med­ical leave. It also does not pro­tect against genetic dis­crim­i­na­tion for dis­abil­ity or long-​​term care insurance.

Use of genetic infor­ma­tion in employ­ment: GINA pro­hibits employ­ers from using a person’s genetic infor­ma­tion to influ­ence hir­ing, fir­ing, assign­ment, and pro­mo­tion deci­sions. How­ever, as pre­vi­ously stated, employ­ers can col­lect genetic infor­ma­tion for employee well­ness programs.

Also of note, GINA is not applic­a­ble to mem­bers of the U.S. mil­i­tary, vet­er­ans receiv­ing ser­vices through the U.S. Depart­ment of Vet­er­ans Affairs, or indi­vid­u­als receiv­ing care through the Indian Health Ser­vice. These groups have their own inter­nal poli­cies that pro­tect against genetic discrimination.

For exam­ples of tests that are pro­tected or not pro­tected under GINA, see Fig­ure 1.

The Future of Genet­ics in Health Insurance

Although GINA pre­vents insur­ers from using genetic infor­ma­tion as grounds for estab­lish­ing a pre­ex­ist­ing con­di­tion, it does not pro­tect against denial of ini­tial cov­er­age when patients cur­rently have a genetic dis­ease like can­cer. How­ever, this is being addressed in the Afford­able Care Act, which was signed into law in March 2010. Although its var­i­ous pro­vi­sions are still being rolled out across a five-​​year time­frame, one of the first to be addressed was the estab­lish­ment of a Pre­ex­ist­ing Con­di­tion Insur­ance Plan in July 2010. The plan serves as a stop-​​gap mea­sure until more com­pre­hen­sive pro­vi­sions are enacted in 2014. For more infor­ma­tion on the 2014 pro­vi­sions, refer to the Capi­tol Con­nec­tion col­umn on p. 18.

For more infor­ma­tion on genetic dis­crim­i­na­tion and genetic infor­ma­tion pri­vacy, refer to the full arti­cle by Steck and Eggert (2011).

• Steck, M.B., & Eggert, J.A. (2011). The need to be aware and beware of the Genetic Infor­ma­tion Nondis­crim­i­na­tion Act. Clin­i­cal Jour­nal of Oncol­ogy Nurs­ing, 15, E34–E41. doi: 10.1188/11.CJON.E34-E41