The Genetic Information Nondiscrimination Act, or GINA, was a unicorn in the divided climate of US politics. GINA made it illegal for employers and other groups to discriminate against people based on their genetics, and to require or even ask for genetic tests, or to hand over the results of previous tests in many contexts. Signed into law by George W. Bush in 2008, it passed with a near-unanimous vote of 414-1 in Congress. Now, Republicans in Congress are pushing a new bill that would gut some of GINA's strongest protections for workers, leading experts to worry that employees may be put in situations where they will have to show their boss their entire genome—or else.
One can imagine a future scenario where an employer might not want to hire someone to be an actuary because they show a genetic predisposition to developing Alzheimer's. But as any geneticist will tell you, DNA is not destiny.The bill, called the Preserving Employee Wellness Programs Act, says that if a workplace wellness program is in compliance with the Public Health Service Act, then it should automatically be considered to be in compliance with GINA. In practice, this clever provision would mean that protections for employees under GINA when it comes to workplace wellness programs would no longer apply. The bill passed a House committee this week with all Republicans supporting and all Democrats opposing.Read More: Canada's New Genetic Discrimination Law Will Prevent a 'Gattaca' FutureFor workplace wellness programs, GINA requires prior consent from employees that genetic information be anonymous, and that only the employee and a medical professional actually get to see the test results. Also under GINA, genetic tests for wellness programs must be totally voluntary. But if GINA no longer applies to such programs, thanks to the Preserving Employee Wellness Programs Act, then these protections would no longer exist."They're completely undermining any protections," said Derek Scholes, director of science policy for the American Society of Human Genetics, which opposes the bill. "If you call it a workplace wellness program, you can ask what you like."
There's also the non-trivial risk that rolling pack protections for people when it comes to genetic testing would have a chilling effect on real science, Scholes said. For example, former President Barack Obama's Precision Medicine Initiative to combat cancer will ask more than one million participants to submit genetic information."It will be difficult to enroll people into this initiative while Congress is removing protections that GINA provided to them at the same time," said Schols. "One of the reasons for GINA was that you could participate in research without the fear that the results from that research could be used against you."This bill would allow employers to mandate through a wellness program that employees divulge results from such research, or pay a penalty," he continued.Since it's just passed a committee, the Preserving Employee Wellness Programs Act has a long way to go before it has a real chance of becoming law. But, if approved, it would put the US behind its international peers when it comes to genetic protections.Until this week, when it passed a genetic non-discrimination law similar to GINA, Canada was the only G7 country without strong protections for DNA.Soon, the US could have that dubious honour.Subscribe to pluspluspodcast, Motherboard's new show about the people and machines that are building our future.
Sheria ya Usimamizi wa Habari za Kizazi (GINA) ilitolewa mnamo Juni mwaka jana na ilikuwa na athari kubwa kwa jamii ya watu wa asili nchini Marekani. GINA ilifanya iwe kinyume cha sheria kwa waajiri na vikundi vingine kutofautisha watu kulingana na maumbile yao, na kudai au hata kuomba vipimo vya maumbile, au kutoa matokeo ya vipimo vya awali katika muktadha mwingi. Mkataba huo uliidhinishwa na Rais George W. Bush mwaka 2008 na ilipitishwa kwa kura ya umoja ya wapiga kura 414-1 katika Bunge la Marekani. Wa-Republican katika Bunge la Marekani wamependekeza sheria mpya ambayo itapunguza ulinzi wa GINA kwa wafanyakazi, na wataalamu wana wasiwasi kwamba wafanyakazi wanaweza kuwekwa katika hali ambapo watalazimika kuonyesha bosi wao genome yao yote au vinginevyo. Kwa mfano, unaweza kufikiria hali ya baadaye ambapo mwajiri anaweza kutotaka kuajiri mtu kuwa mtaalamu wa akuta kwa sababu anaonyesha mwelekeo wa maumbile wa kuendeleza ugonjwa wa Alzheimer. "Kama mtaalamu yeyote wa maumbile atakavyokuambia, DNA si hatima. ""Sheria ya Uhifadhi wa Programu za Afya ya Wafanyakazi inasema kwamba ikiwa programu ya afya ya mahali pa kazi inapatana na Sheria ya Huduma ya Afya ya Umma, basi inapaswa kuonwa kuwa inapatana na GINA." Kwa mfano, sheria hii ya GINA inamaanisha kwamba ulinzi kwa wafanyikazi chini ya GINA wakati wa programu za afya za mahali pa kazi haitatumika tena. "Kama ilivyoelezwa katika taarifa ya Kamati ya Bunge, sheria hiyo ilichaguliwa na chama cha Republican na chama cha Democrat, na ilisema: ""Kama sheria mpya ya ubaguzi wa maumbile ya Canada itazuia Gattaca, GINA inahitaji idhini ya awali kutoka kwa wafanyikazi kwamba habari ya maumbile ni ya kutokujulikana, na kwamba tu mfanyakazi na mtaalamu wa matibabu wanaweza kuona matokeo ya mtihani.""" Pia chini ya GINA, vipimo vya maumbile kwa ajili ya programu za afya lazima iwe ya hiari kabisa. "Lakini ikiwa GINA haitatumika tena kwa programu kama hizo, shukrani kwa Sheria ya Kuhifadhi Programu za Afya ya Wafanyakazi, basi ulinzi huu hautakuwapo tena. """ "Wanaidhinisha kabisa ulinzi wowote,"" alisema Derek Scholes, mkurugenzi wa sera za sayansi kwa Shirika la Marekani la Genetics ya Binadamu, ambalo linapinga muswada huo. "Ikiwa unaiita programu ya afya kazini, unaweza kuuliza unachotaka". "Kuna pia hatari isiyo ya kawaida kwamba ulinzi wa pakiti ya rolling kwa watu linapokuja majaribio ya maumbile itakuwa na athari ya baridi kwenye sayansi halisi, ""Alisema Scholes." Kwa mfano, mpango wa Rais Barack Obama wa kupambana na saratani unaoitwa Precision Medicine Initiative, utawaomba washiriki zaidi ya milioni moja kutoa habari za maumbile yao. "Itaonekana kuwa vigumu kuandikisha watu katika mpango huu wakati Bunge linapoondoa ulinzi ambao GINA iliwapa wakati huo huo, ""alisema Scholes." "Mmoja wa sababu za GINA ilikuwa kwamba unaweza kushiriki katika utafiti bila hofu kwamba matokeo kutoka kwa utafiti huo yanaweza kutumika dhidi yako. """ "Sheria hii itawawezesha waajiri kuamuru kupitia programu ya ustawi kwamba wafanyikazi wafunue matokeo ya utafiti kama huo, au kulipa adhabu, ""aliendelea, ""Kwa kuwa imepitishwa tu na kamati, Sheria ya Kuhifadhi Programu za Ustawi wa Wafanyakazi ina njia ndefu ya kwenda kabla ya kuwa na nafasi halisi ya kuwa sheria." "Hata hivyo, ikiwa itaidhinishwa, itaweka Marekani nyuma ya wenzao wa kimataifa linapokuja ulinzi wa maumbile. ""Hata wiki hii, wakati ilipitisha sheria ya kutobaguzi ya maumbile kama GINA, Canada ilikuwa nchi pekee ya G7 bila ulinzi mkubwa wa DNA, hivi karibuni, Marekani inaweza kuwa na heshima hiyo ya kutiliwa shaka. "" - Bill Gates"