Will Washington Enforce the Genetic Non-Discrimination Act?

Lewis Maltby

First-ever case tests 2008 law ban­ning employ­ers from dis­crim­i­nat­ing based on work­ers’ genet­ic profiles

Pamela Find didn’t want to make his­to­ry; she just didn’t want to die of can­cer. But when her employ­er fired her because she car­ried a gene linked to breast can­cer, Fink became the first Amer­i­can work­er to file an offi­cial fed­er­al com­plaint under the Genet­ic Infor­ma­tion Non-Dis­crim­i­na­tion Act (GINA), which Con­gress passed in 2008.

The leg­is­la­tion, enact­ed after decades of pres­sure from the Nation­al Workrights Insti­tute (the orga­ni­za­tion I lead) and oth­er pub­lic inter­est orga­ni­za­tions, pro­hibits employ­ment dis­crim­i­na­tion based on genet­ics, and bans employ­er access to employ­ees’ (or prospec­tive employ­ees’) genet­ic information.

Of course, as sci­en­tists con­tin­ue to iden­ti­fy spe­cif­ic genes linked to breast can­cer, Alzheimer’s and Huntington’s dis­ease, that genet­ic infor­ma­tion may ulti­mate­ly be the first step to find­ing a cure for dead­ly ill­ness­es. Imag­ine a world in which no one has to watch a par­ent suc­cumb to Alzheimer’s.

But the imme­di­ate effect of new genet­ic knowl­edge could be employ­ee dis­crim­i­na­tion on an unprece­dent­ed scale.

When the cost of test­ing gets low enough, employ­ers might begin test­ing every appli­cant and refuse to hire those car­ry­ing genes linked to dead­ly (read: cost­ly) dis­eases. In an era when employ­ers are doing every­thing pos­si­ble to cut health­care costs, many employ­ers may avoid hir­ing some­one they con­sid­er a finan­cial time bomb.

So Con­gress act­ed. But GINA didn’t stop Fink’s employ­er, MXen­er­gy, from fir­ing her. After one of her two sis­ters was diag­nosed with breast can­cer, Fink took a genet­ic test to see if she too was at risk. The test came back pos­i­tive. When her oth­er sis­ter con­tract­ed breast can­cer, in Octo­ber 2009 Fink made the most painful deci­sion of her life — to have a pre­ven­tive dou­ble mastectomy.

She explained to her employ­er, a nat­ur­al gas retail­er based in Stam­ford, Conn., that she would be out of work for med­ical treat­ment and explained the rea­son. Fink returned to work in Novem­ber, and the next month MXen­er­gy demot­ed her — despite glow­ing per­for­mance reviews pri­or to her surgery.

Then in Jan­u­ary 2010, she took two weeks off for a fol­low-up pro­ce­dure, return­ing to work in Feb­ru­ary. Just over one month after that, MXen­er­gy fired her.

Fink made the com­mon mis­take of believ­ing that because she had a good rela­tion­ship with her boss and had been a val­ued employ­ee for years, the com­pa­ny would treat her fair­ly. It’s an easy mis­take to make. Employ­ers talk a great deal about employ­ees being part­ners” or asso­ciates” and train man­agers in peo­ple skills to increase productivity.

But the bot­tom line is that every company’s ulti­mate goal is to make mon­ey. The fact that your boss likes you is no pro­tec­tion when the com­pa­ny can save mon­ey by fir­ing you.

Fink respond­ed to her fir­ing in April by fil­ing a com­plaint with the fed­er­al Equal Employ­ment Oppor­tu­ni­ty Cen­ter (EEOC). But that action doesn’t ensure jus­tice — MXen­er­gy has hired a pow­er­house cor­po­rate law firm to fight the case, and the EEOC takes less than 1 per­cent of the com­plaints it receives to court. Instead, it often nego­ti­ates a set­tle­ment with employ­ers to resolve cases.

Crit­ics charge that the agency is often more inter­est­ed in get­ting the employ­ee to accept what­ev­er the employ­er offers than get­ting the employ­er to make a fair offer. In oth­er instances, the EEOC will deter­mine that the employ­ee was tru­ly a vic­tim of dis­crim­i­na­tion but decline to take the case to court, instead gives the employ­ee a right to sue let­ter” allow­ing her to lit­i­gate at her own expense.

Since Fisk’s case is the first of its kind, the man­ner in which the EEOC han­dles it will send a strong mes­sage to employ­ers about how seri­ous the agency is about enforc­ing GINA.

Any­one who cares about genet­ic dis­crim­i­na­tion — and work­ers’ rights in gen­er­al — should send an e‑mail to EEOC Com­mis­sion­er Jacque­line Berrien (Jacqueline.​Berrien@​EEOC.​gov) urg­ing her to take the case to court. Or — even bet­ter — go to the fol­low­ing link and send an e‑mail to all four com­mis­sion­ers, which are avail­able here.

The EEOC wants to do the right thing. Receiv­ing e‑mail from the pub­lic could ensure the com­mis­sion takes Fink’s case — and set a clear exam­ple for oth­er employ­ers think­ing about fir­ing some­one sim­ply because of their genes.

Lew Malt­by, the author of Can They Do That?: Retak­ing Our Fun­da­men­tal Rights in the Work­place, is pres­i­dent and founder of the Nation­al Workrights Insti­tute.

Lewis Malt­by is pres­i­dent and founder of the Nation­al Workrights Insti­tute and for­mer Direc­tor of Employ­ment Rights for the ACLU. He has tes­ti­fied before Con­gress many times on employ­ment issues and appeared on 60 Min­utes, Lar­ry King Live, and Oprah. He lives in Prince­ton, N.J., and is the author of Can They Do That?: Retak­ing Our Fun­da­men­tal Rights in the Workplace.
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