2008 mein Congress ne ek aisa qanoon pass kiya jo taqreeban kisi ko yaad nahi. Genetic Information Nondiscrimination Act. GINA. Is ne kaha ke health insurer aap ke genes dekh kar, jo kuch un mein mile us ki buniyad par na aap ko coverage se inkar kar sakta hai na premium barha sakta hai, aur employer is ki buniyad par ye faisla nahi kar sakta ke aap ko naukri de ya nahi. Aap ka DNA, aur jo woh un bimariyon ke baare mein batata hai jo aap ko shayad kabhi ho jayein, un logon ki pohanch se bahar kar diya gaya jo care ki qeemat lagate aur usay taqseem karte hain.
Sochiye is qanoon ne kya farz kiya tha. Is ne farz kiya ke aap ki aane wali sehat ke baare mein prediction aap ki aaj ki sehat se alag cheez hai. Aap beemar nahi. Aap mein ek gene hai jo kehta hai ke aap beemar ho sakte hain. Congress ne tay kiya ke ye faasla, jo aap hain aur jo aap ban sakte hain us ke darmiyan, itna khatarnak hai ke qanoon ke zariye us ke gird deewar khari ki jaye. Kisi bimari ke rujhan ko bimari nahi samjha jana tha.
GINA ne lakeer ek khaas jagah kheenchi, aur woh jagah ahem hai. Ye aap ke genotype ko protect karta hai, phenotype ko nahi. Ye aap ko tab tak protect karta hai jab tak aap asymptomatic hain. Jis lamhe koi condition aap ke chart mein diagnosis ban kar zahir hoti hai, GINA lagoo nahi rehta, kyun ke ab ye bas aap ki sehat hai, aur insurers ko hamesha se us ki qeemat lagane ki ijazat rahi hai. GINA ne kabhi life insurance, disability insurance ya long-term care insurance ko cover nahi kiya. Un markets mein aap ke genes ab bhi jaiz nishana hain.
To qanoon ne ek tang sa ilaqa mehfooz chhora: aane wali bimari ki predictions, sirf DNA se nikli hui, sirf health insurance aur employment mein. In lakeeron se aage sab kuch khula raha.
Continuous health monitoring seedha isi khuli zameen mein qadam rakhti hai.
Trajectory aane wali bimari ki prediction hai. Aap ke genes se nahi. Aap ke data se. Aap ka kidney function teen saal se khisak raha hai, ab bhi normal range ke andar, lekin simt saaf hai aur anjaam ka hisaab lagaya ja sakta hai. Aap ko chronic kidney disease nahi. Aap ke paas ek signal hai jo kehta hai ke hone wali hai. Ye aap ka genotype nahi. Ye zahir ho chuki condition bhi nahi, kyun ke abhi kuch zahir hua hi nahi. Ye bilkul wahi cheez hai jise bachane ke liye GINA bana tha, is baat ki prediction ke aap kya ban sakte hain, aise tareeqe se nikli hui jis ka qanoon ne kabhi tasawwur nahi kiya aur jise woh cover nahi karta.
Trajectory naya genome hai. Ye wahi mustaqbal predict karti hai, usi faasle mein baithi hai jo aap hain aur jo aap ban sakte hain us ke darmiyan, aur koi isay mamnoo nahi samajhta.
Aap soch sakte hain ke ye aisi cheez ki fikr hai jo abhi hui nahi. Ye ho chuki hai, us bhaddi shakal mein jis ki technology ne ijazat di.
2023 mein ProPublica ne report kiya ke Cigna ne ek aisa system banaya tha jise us ke apne doctors PXDX kehte the. Is ke zariye company ke physicians mareez ki file khole baghair claims ek saath batches mein reject kar sakte the. Do mahine mein Cigna ke doctors ne teen lakh se zyada requests deny kin, har ek par ausatan 1.2 seconds laga kar. 1.2 seconds mein to naam bhi nahi parha ja sakta, file to door ki baat. Ek medical director ne ek hi mahine mein saath hazaar claims deny kiye. "Hum sach mein bas click karte hain aur submit," ek doctor ne unhein bataya.
Usi saal STAT News ne report kiya ke UnitedHealth nH Predict naam ka ek algorithm use kar rahi thi, ye tay karne ke liye ke buzurg mareez rehabilitation mein kitni der reh sakte hain, aur jab un ki care model ki prediction se aage barh jaye to payment band karne ke liye. Is ke baad ek class action hua, jis mein ilzam tha ke algorithm ke denials appeal par nabbe percent se zyada dafa ulat diye gaye. Company phir bhi isay use karti rahi.
Ghaur karein ke in systems mein kya mushtarik hai. Ye claim ka intezar karte hain, phir woh care dene se inkar kar dete hain jis ki mareez ko pehle se zaroorat hai. Sab ke sab peeche dekhne wale, jo kuch pehle hi bigar chuka us ko "nahi" kehne ki mashinein. Aur ye is soch ka sirf bhadda roop hai. Ye abhi se itna tabah kun hai.
Trajectory woh roop mumkin banati hai jise rokne ke liye GINA asal mein likha gaya tha. Aap ka file kiya hua claim deny karna nahi. Balke aap ko kuch bhi file karne se pehle flag kar dena, beemar hone se pehle, is se pehle ke aap ko zara sa bhi andaza ho ke kuch ghalat hai, aur ek aise mustaqbal ki qeemat laga dena jise qanoon ne genes mein likha ho to deewar ke peeche kar diya aur data mein likha ho to poori tarah khula chhor diya. Aur ye aisi prediction se hota hai jo aksar aap ke genes se behtar hoti hai, isi liye ke woh dikhati hai ke aap ka jism asal mein kaise badal raha hai, na ke woh paida kaisa hua tha.
Ab imandari wala aitraaz. Genes tay shuda hain aur trajectory nahi. Trajectory ko aage parhne ka poora maqsad hi ye hai ke koi us par amal kar ke anjaam badal sake. Khisakti hui kidney jaldi pakri jaye to bachai ja sakti hai. Ye trajectories parhne ki wajah hai, un se darne ki nahi. Un ke gird deewar khari karein to woh zindagiyan kho denge jo early detection bachata hai.
Ye sach hai, aur yahi wajah hai ke ye mushkil hai. Genetic information ko protect karna aasan tha kyun ke woh mareez ke liye zyada tar be-faida thi aur ghalat haathon mein khatarnak. Trajectory mareez ke liye behad faidemand hai aur ghalat haathon mein khatarnak. Aap is par pabandi nahi laga sakte. Aisa karna early medicine par pabandi lagana hoga.
Is ka matlab ye hai ke sawal kabhi ye tha hi nahi ke trajectory parhi jaye ya nahi. Sawal ye hai ke kis ko parhne ki ijazat hai, aur kis ki taraf se. Wahi sawal jis ka jawab GINA ne genes ke liye diya, bas ab daao zyada hai, kyun ke data par pabandi laga kar isay tay nahi kiya ja sakta. Data ko parhna hi hoga. Sirf ye faisla baqi hai ke kaun parhta hai, aur woh kis ke aage jawabdeh hai.
Lakeerein dobara kheenchi ja rahi hain, ahista ahista. 2024 mein California ne SB 1120 pass kiya, jo kehta hai ke health insurer care deny karne ke liye algorithm ko akeli buniyad nahi bana sakta. Faisla ek licensed clinician ko karna hoga. Ye asal qanoon hai, aur acha qanoon hai. Lekin is ka nishana reactive masla hai, pehle se file hua claim, nH Predict wali surat-e-haal. Ye prospective masle ke baare mein kuch nahi kehta. Ye is ko chhoota tak nahi ke aap ke beemar hone se bhi pehle aap ki trajectory parhne ka haq kis ko hai.
Humne 2008 mein GINA ek aisi technology ke liye likha, genetic testing, jo hamare dar se kam predict karti nikli. Jo technology zyada predict karti hai, us ke liye humne abhi kuch nahi likha.
Aur ye bhi wazeh nahi ke woh qanoon kahega kya. Yahi woh hissa hai jo kisi saaf suthre anjaam mein fit nahi hota. Trajectory ke gird waise deewar nahi khari ki ja sakti jaise gene ke gird ki gayi, kyun ke parhna hi woh cheez hai jo mareez ko bachati hai. Jo qaida itna mazboot ho ke prediction ko insurer se door rakhe, woh itna mazboot bhi hoga ke usay doctor se door rakhe. Logon ko forecast se bachayein to aap unhein ilaaj se bhi bacha dete hain. Kisi ne abhi tak woh shakal draft nahi ki jo is mushkil ko sulajha sake, aur mumkin hai koi kar hi na sake.
Humne Chroneme trajectories parhne ke liye banaya, is liye hum ye dikhawa nahi kar sakte ke ye sawal kisi aur ka hai. Hamara jawab ye hai ke trajectory clinician aur mareez ki hai, ke har reading ke peeche ki reasoning aisi cheez hai jise doctor khol kar check kar sake, aur ke aap ki sehat kis taraf ja rahi hai, is ki prediction aap ke aage jawabdeh honi chahiye, aap ke peeche khare kisi aur ke aage nahi. Ye ek faisla hai jo humne kiya, technology ki koi khoobi nahi. Jo bhi ye bana raha hai woh yahi faisla karta hai, chahe maane ya na maane.
Genome ko qanoon mil gaya. Trajectory ko nahi mila. Ye wahi mustaqbal predict karti hai, usi faasle mein baithi hai, aur is waqt ye tay karne wali wahid cheez ke ye kis ki khidmat kare, woh hai jo bhi ye chunta hai ke signal kahan jaye.
Sources: Genetic Information Nondiscrimination Act of 2008 (genome.gov; Cornell Legal Information Institute), jis mein is ka genotype/phenotype scope aur life, disability aur long-term-care insurance ka is se bahar hona shamil hai. Cigna PXDX: ProPublica, March 2023. UnitedHealth nH Predict: STAT News, November 2023, aur us ke baad Minnesota ka class action. California SB 1120, Physicians Make Decisions Act, 2024 mein sign hua, January 2025 se nafiz.
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