Ye Line Humne Ek Baar Kheenchi Thi

2008 mein Congress ne ek aisa law pass kiya jo lagbhag kisi ko yaad nahi. Genetic Information Nondiscrimination Act. GINA. Isne kaha ki koi health insurer aapke genes dekh kar, jo mile uske basis pe aapko coverage se mana nahi kar sakta ya aapka premium nahi badha sakta, aur koi employer ise aapko hire karne ka faisla lene ke liye use nahi kar sakta. Aapka DNA, aur wo un bimariyon ke baare mein jo predict karta hai jo aapko shayad kabhi ho sakti hain, un logon ke liye off-limits kar diya gaya jo care ki keemat lagate hain aur use baantte hain.

Sochiye ki wo law kis baat ko maan kar chal raha tha. Usne maana ki aapki future health ke baare mein prediction aapki aaj ki health se alag cheez hai. Aap beemar nahi hain. Aapke andar ek gene hai jo kehta hai ki aap beemar ho sakte hain. Congress ne tay kiya ki ye gap, jo aap hain aur jo aap ban sakte hain uske beech, itna khatarnaak hai ki ise law se deewar khadi karke alag kiya jaaye. Predisposition ko disease nahi maana jaana tha.

GINA ne line ek khaas jagah kheenchi, aur wo jagah matter karti hai. Ye aapke genotype ko protect karta hai, phenotype ko nahi. Ye aapko tab tak protect karta hai jab tak aap asymptomatic hain. Jis pal koi condition aapke chart mein diagnosis ban kar saamne aati hai, GINA laagu nahi hota, kyunki ab wo bas aapki health hai, aur insurers ko uski keemat lagane ki hamesha ijaazat rahi hai. GINA ne life insurance, disability insurance ya long-term care insurance ko bhi kabhi cover nahi kiya. Un markets mein aapke genes aaj bhi khule maidan mein hain.

Yaani law ne ek tang sa ilaaka protect kiya: future disease ki predictions, khaas taur pe DNA se nikli hui, khaas taur pe health insurance aur employment mein. Un lines ke paar sab kuch khula reh gaya.

Continuous health monitoring seedhe usi khule maidan mein utarti hai.

Trajectory future disease ki prediction hai. Aapke genes se nahi. Aapke data se. Aapka kidney function teen saal se dheere dheere khisak raha hai, abhi bhi normal range ke andar, lekin direction saaf hai aur end point calculate kiya ja sakta hai. Aapko chronic kidney disease nahi hai. Aapke paas ek signal hai jo kehta hai ki hogi. Ye aapka genotype nahi hai. Ye koi manifested condition bhi nahi, kyunki abhi kuch manifest hua hi nahi. Ye bilkul wahi cheez hai jise protect karne ke liye GINA bana tha, ek prediction ki aap kya ban sakte hain, aise tareeke se nikli hui jiski law ne kabhi kalpana nahi ki aur jise wo cover nahi karta.

Aapko lag sakta hai ki ye ek aisi cheez ki fikr hai jo hui hi nahi. Ye ho chuki hai, us kachche roop mein jitna technology ne ijaazat di.

2023 mein ProPublica ne report kiya ki Cigna ne ek system banaya tha jise uske apne doctors PXDX kehte the. Isse company ke physicians patient ki file khole bina claims ko batches mein reject kar sakte the. Do mahine mein Cigna ke doctors ne teen lakh se zyada requests deny kin, har ek pe average 1.2 seconds lagakar. Ek-point-do seconds mein naam padhna mushkil hai, file toh 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 unse kaha.

Usi saal STAT News ne report kiya ki UnitedHealth nH Predict naam ka ek algorithm use kar raha tha, ye tay karne ke liye ki buzurg patients rehabilitation mein kitne din reh sakte hain, aur jab unki care model ki prediction se aage chali jaaye toh payment band karne ke liye. Iske baad ek class action aaya, jismein ilzaam tha ki algorithm ke denials appeal pe nabbe percent se zyada baar palat diye gaye. Company use use karti rahi.

Dekhiye in systems mein kya common hai. Ye claim ka intezaar karte hain, phir wo care dene se mana karte hain jiski patient ko pehle se zaroorat hai. Har ek peeche ki taraf dekhne wala, jo pehle se bigad chuka hai us pe na kehne ki ek machine. Aur ye is idea ka sirf kachcha roop hai. Aur ye abhi se itna tabaah karne wala hai.

Trajectory us roop ko mumkin banati hai jise rokne ke liye GINA asal mein likha gaya tha. Aapke file kiye claim ko deny karna nahi. Aapke kuch bhi file karne se pehle, aapke beemar hone se pehle, aapko kuch bhi gadbad ka andaaza hone se pehle, aapko flag kar dena. Ek aise future ki keemat lagana jise law ne deewar ke peeche rakha jab wo aapke genes mein likha tha, aur khula chhod diya jab wo aapke data mein likha hai. Aur ye ek aisi prediction se jo aksar aapke genes se behtar hoti hai, theek isliye kyunki wo dikhati hai ki aapki body asal mein kaise badal rahi hai, na ki wo kaisi paida hui thi.

Ab ek imaandaar objection ye hai. Genes fixed hain aur trajectory nahi. Trajectory ko aage ki taraf padhne ka poora matlab hi ye hai ki koi us pe act kare aur ending badal de. Jaldi pakdi gayi khisakti kidney bachai ja sakti hai. Ye trajectories padhne ki wajah hai, unse darne ki nahi. Unhe deewar ke peeche rakh do, toh wo zindagiyaan kho doge jo early detection bachata hai.

Ye sach hai, aur yahi wajah hai ki ye mushkil hai. Genetic information ko protect karna aasaan tha kyunki wo patient ke liye zyadatar bekaar thi aur galat haathon mein khatarnaak. Trajectory patient ke liye bahut kaam ki hai aur galat haathon mein khatarnaak. Aap ise ban nahi kar sakte. Aisa karna early medicine ko ban karna hoga.

Matlab sawaal kabhi ye tha hi nahi ki trajectory padhi jaaye ya nahi. Sawaal ye hai ki ise kaun padh sakta hai, aur kiski taraf se. Wahi sawaal jiska jawaab GINA ne genes ke liye diya, bas ab daav bade hain, kyunki ise data pe rok lagakar suljhaya nahi ja sakta. Data padha hi jaana chahiye. Bas ek faisla bacha hai: ise kaun padhta hai, aur wo kisko jawaabdeh hai.

Lines dheere dheere dobara kheenchi ja rahi hain. 2024 mein California ne SB 1120 pass kiya, jo kehta hai ki health insurer care deny karne ke liye algorithm ko akela basis nahi bana sakta. Faisla ek licensed clinician ko lena hoga. Ye ek asli law hai aur achha law hai. Lekin iska nishaana reactive problem hai, pehle se file hua claim, nH Predict wala scenario. Prospective problem ke baare mein ye kuch nahi kehta. Ye is baat ko chhoota tak nahi ki aapke beemar hone se pehle aapki trajectory kaun padh sakta hai.

Humne 2008 mein GINA ek technology ke liye likha, genetic testing, jo hamare darr se kam predict karne wali nikli. Jo technology zyada predict karti hai, uske liye humne kuch nahi likha.

Aur ye bhi saaf nahi ki wo law kahega kya. Yahi wo hissa hai jo ek saaf-suthre ant mein fit nahi hota. Trajectory ko aap waise deewar ke peeche nahi rakh sakte jaise gene ko rakha, kyunki padhna hi wo cheez hai jo patient ko bachati hai. Jo rule itna strong ho ki prediction ko insurer se door rakhe, wo itna strong hoga ki use doctor se bhi door rakhe. Logon ko forecast se bachao, toh unhe ilaaj se bhi bacha doge. Kisi ne ab tak wo version draft nahi kiya jo is sooi mein dhaaga piro sake, aur ho sakta hai koi kar hi na sake.

Humne Chroneme trajectories padhne ke liye banaya, isliye hum ye dikhava nahi kar sakte ki ye sawaal kisi aur ka hai. Hamara jawaab ye hai ki trajectory clinician aur patient ki hai, ki har reading ke peeche ki reasoning aisi cheez hai jise doctor khol kar check kar sake, aur ki aapki health kis taraf ja rahi hai iski prediction aapko jawaabdeh honi chahiye, aapke peeche khade kisi aur ko nahi. Ye ek choice hai jo humne ki, technology ki koi property nahi. Jo bhi ye bana raha hai, wo yahi choice karta hai, chahe maane ya na maane.

Genome ko ek law mila. Trajectory ko nahi. Ye wahi future predict karti hai, usi gap mein baithti hai, aur abhi ye kiski seva karegi, ye sirf wo tay kar raha hai jo chunta hai ki signal kahan jaaye.