Ubumfihlo bebhayoloji: Ukuvikela ukwabelana nge-DNA

• About the Author:
• Igama lomlobi

  I-Quantumrun Foresight
• November 25, 2022

Isifinyezo sokuqonda

Amabhange e-Biobank kanye nezinkampani zokuhlola i-biotech zenze imininingwane yofuzo yatholakala kakhulu. Idatha yebhayoloji isetshenziselwa ukuthola ukwelashwa komdlavuza, izifo zofuzo ezingavamile, nezinye izifo ezihlukahlukene. Kodwa-ke, ubumfihlo be-DNA bungase bunikelwe ngokwandayo egameni locwaningo lwesayensi.

Ingqikithi yobumfihlo bebhayoloji

Ubumfihlo bebhayoloji buyinkinga ebalulekile enkathini yocwaningo lofuzo oluthuthukile nokuhlolwa kwe-DNA okwandile. Lo mqondo ugxile ekuvikeleni ulwazi lomuntu siqu lwabantu abahlinzeka ngamasampula e-DNA, okuhlanganisa nokuphathwa kwemvume yabo mayelana nokusetshenziswa nokugcinwa kwalawa masampuli. Ngokusetshenziswa okwandayo kwesizindalwazi sofuzo, kunesidingo esikhulayo semithetho yobumfihlo ebuyekeziwe ukuze kuvikelwe amalungelo abantu ngabanye. Ukuhluka kolwazi lwezakhi zofuzo kubangela inselele enkulu, njengoba ngokwemvelo luboshelwe kubunikazi bomuntu futhi akukwazi ukuhlukaniswa nokuhlonza izici, okwenza ukususa ukuhlonza kube umsebenzi oyinkimbinkimbi.

E-US, eminye imithetho yenhlangano ikhuluma ngokuphathwa kolwazi lofuzo, kodwa ayikho eqondiswe ngokuqondile ezinhlobonhlobo zobumfihlo bebhayoloji. Isibonelo, iGenetic Information Nondiscrimination Act (GINA), eyasungulwa ngo-2008, ikhuluma kakhulu nokucwaswa okusekelwe kulwazi lofuzo. Iyakwenqabela ukubandlululwa kumshwalense wezempilo kanye nezinqumo zokuqashwa kodwa ayikwendisi isivikelo sayo kumshwalense wempilo, wokukhubazeka, noma wokunakekela wesikhathi eside. 

Omunye umthetho obalulekile wuMthetho Wokuthwala Nokuziphendulela Kwezempilo (i-HIPAA), owachitshiyelwa ngo-2013 ukuze ufake ulwazi lofuzo ngaphansi kwesigaba sawo Solwazi Lwezempilo Oluvikelwe (PHI). Ngaphandle kwalokhu kufakwa, ububanzi be-HIPAA bukhawulelwe kubahlinzeki bokunakekelwa kwezempilo okuyisisekelo, njengezibhedlela nemitholampilo, futhi akunwebeki kumasevisi okuhlola izakhi zofuzo aku-inthanethi njenge-23andMe. Leli gebe emthethweni libonisa ukuthi abasebenzisi balezo zinsizakalo bangase bangabi nalo izinga elifanayo lokuvikelwa kobumfihlo njengeziguli ezisezilungiselelweni zokunakekelwa kwezempilo zendabuko. 

Umthelela ophazamisayo

Ngenxa yale mikhawulo, ezinye izifundazwe zase-US zenze imithetho yobumfihlo eqinile nechazwe kakhulu. Isibonelo, i-California yaphasisa uMthetho Wobumfihlo Bolwazi Lofuzo ngo-2022, okhawulela izinkampani zokuhlola izakhi zofuzo eziqonde ngqo kumthengi (i-D2C) njenge-23andMe kanye ne-Ancestry. Umthetho udinga imvume ecacile yokusebenzisa i-DNA ocwaningweni noma ezivumelwaneni zezinkampani zangaphandle.

Ngaphezu kwalokho, imikhuba ekhohlisayo yokukhohlisa noma ukwesabisa abantu ukuze banikeze imvume ayivunyelwe. Amakhasimende angaphinda acele ukuthi idatha yawo isuswe nanoma imaphi amasampula acekelwe phansi ngalo mthetho. Khonamanjalo, iMaryland kanye neMontana baphasise imithetho yozalo lwezobunhloli edinga ukuthi izikhulu zomthetho zithole incwadi egunyaza ukusesha ngaphambi kokubuka imininingwane yolwazi lweDNA ukuze kuphenywe ngobugebengu. 

Nokho, kusenezinselelo ezithile ekuvikeleni ubumfihlo bebhayoloji. Kunokukhathazeka mayelana nobumfihlo bezempilo. Isibonelo, lapho abantu kudingeka bavumele ukufinyelela kumarekhodi abo ezempilo ngokusekelwe ekugunyazweni okubanzi nokuvame ukungadingeki. Izibonelo yizimo lapho umuntu kufanele aqale asayine ukukhululwa kolwazi lwezokwelapha ngaphambi kokuba akwazi ukufaka isicelo sezinzuzo zikahulumeni noma athole umshwalense wempilo.

Omunye umkhuba lapho ubumfihlo bebhayoloji buphenduka indawo empunga wukuhlolwa okusanda kuzalwa. Imithetho yezwe idinga ukuthi zonke izingane ezisanda kuzalwa zihlolelwe okungenani iziyaluyalu ezingama-21 ukuze zisheshe zilekelele. Abanye ochwepheshe bakhathazeka ngokuthi leli gunya lizohlanganisa izimo ezingabonakali kuze kube yilapho umuntu esekhulile noma ezingenakho ukwelashwa okwaziwayo.

Imithelela yobumfihlo bebhayoloji

Imithelela ebanzi yobumfihlo bebhayoloji ingase ihlanganise: 

• Izinhlangano zocwaningo nezinkampani ze-biotech ezidinga imvume ecacile evela kubanikeli ngocwaningo olusekelwe ku-DNA nokuqoqwa kwedatha.
• Amaqembu alwela amalungelo abantu afuna ukuqoqwa kwe-DNA eqhutshwa uhulumeni ukuthi kube sobala futhi kube nesimilo.
• Izifundazwe ezigunyaziwe ezifana ne-Russia kanye ne-China zenza amaphrofayili wofuzo kusuka kumadrayivu azo amakhulu e-DNA ukuze zibone kangcono ukuthi yibaphi abantu abayifanelekela kahle imisebenzi ethile yomphakathi, njengamasosha.
• Izifundazwe eziningi zase-US zisebenzisa imithetho yobumfihlo yedatha yofuzo ngayinye; nokho, njengoba lezi zingalingani, zingase zibe nokugxila okuhlukile noma izinqubomgomo eziphikisanayo.
• Ukufinyelela kwezinhlangano zokuqinisa umthetho kusizindalwazi se-DNA kukhawulelwe ukuze kuvinjelwe ukusebenza kwamaphoyisa ngokweqile noma ukubikezela kwamaphoyisa aphinde aphoqelele ukucwasa.
• Ubuchwepheshe obusafufusa kuzakhi zofuzo obukhuthaza amamodeli ebhizinisi amasha kumshwalense nokunakekelwa kwezempilo, lapho izinkampani zingase zinikeze izinhlelo eziqondene nawe ezisuselwe kumaphrofayili wofuzo angawodwana.
• Amaqembu amelela abathengi akhulisa ingcindezi yokulebula okucacile nezivumelwano zokuvuma emikhiqizweni esebenzisa idatha yofuzo, okuholela ekuhleleni obala emakethe ye-biotechnology.
• Ohulumeni emhlabeni wonke bacubungula imihlahlandlela yokuziphatha kanye nezinhlaka zokulawula zokugada izakhi zofuzo ukuze kuvinjelwe ukusetshenziswa kabi kwedatha yofuzo nokuvikela inkululeko yomuntu ngamunye.

Imibuzo okufanele icatshangelwe

• Uma unikele ngamasampula e-DNA noma uqedele ukuhlolwa kofuzo ku-inthanethi, beziyini izinqubomgomo zobumfihlo?
• Ohulumeni bangabuvikela kanjani futhi ubumfihlo bezakhamuzi zebhayoloji?