Ukuqashelwa kofuzo: Abantu manje babonakala kalula ngezakhi zabo zofuzo

• About the Author:
• Igama lomlobi

  I-Quantumrun Foresight
• November 30, 2022

Isifinyezo sokuqonda

Nakuba ukuhlola i-DNA yomthengi kungase kube indlela ejabulisayo yokufunda okwengeziwe ngefa lomuntu, futhi kunethuba lokuvumela abanye ukuthi babone abantu ngabanye ngaphandle kwemvume yabo noma ulwazi. Kunesidingo esiphuthumayo sokubhekana nokuthi ukuqashelwa kofuzo kanye nokugcinwa kolwazi kufanele kulawulwe kanjani ukuze kwakhiwe ibhalansi phakathi kocwaningo lomphakathi kanye nobumfihlo bomuntu siqu. Imithelela yesikhathi eside yokuqashelwa kofuzo ingabandakanya ukuphoqelelwa komthetho ukungena kusizindalwazi sofuzo kanye ne-Big Pharma isebenzisana nabahlinzeki bokuhlola izakhi zofuzo.

Umongo wokuqashelwa kofuzo

Izakhamizi zaseMelika ezidabuka e-Europe manje zinethuba elingamaphesenti angu-60 lokutholwa futhi ziqashelwe ngokuhlolwa kwe-DNA, ngisho noma zingakaze zithumele isampula ezinkampanini ezifana ne-23andMe noma i-AncestryDNA, ngokombiko wephephabhuku leSayensi. Isizathu siwukuthi idatha ye-biometric engacutshungulwanga ingadluliselwa kumawebhusayithi avulekele umphakathi, njenge-GEDmatch. Le ngosi ivumela abasebenzisi ukuthi bafune izihlobo ngokubheka imininingwane ye-DNA kwezinye izinkundla. Ukwengeza, abacwaningi bezobunhloli bangafinyelela le webhusayithi futhi basebenzise idatha ehlanganiswe nolwazi olwengeziwe olutholakala ku-Facebook noma kumarekhodi kahulumeni.

Isizindalwazi sofuzo somuntu esikhula njalo se-23andMe sesingesinye, uma kungesona esikhulu kunazo zonke, futhi esibaluleke kakhulu. Kusukela ngo-2022, abantu abayizigidi eziyi-12 bakhokha ukulandelanisa i-DNA yabo nenkampani, futhi amaphesenti angama-30 akhetha ukwabelana ngaleyo mibiko nabasebenzi bezempilo, ngokusho kwe-23andMe. Nakuba abantu abaningi bekulungele ukuhlolwa kofuzo ngezinjongo zokunakekelwa kwezempilo, indawo yomuntu nayo idlala indima ekukhuleni kwesifo. 

Ukwengeza, ngenxa yokuthi izifo zabantu zivame ukuvela ngenxa yokukhubazeka okuningi kwezakhi zofuzo, ukuqoqa idatha enkulu ye-DNA kubalulekile ocwaningweni lwesayensi. Ngokuphambene nokunikeza ulwazi lokuxilonga mayelana nomuntu oyedwa, amasethi edatha amakhulu ngokuvamile anikeza inani elikhulu lapho ufunda imininingwane engaziwa mayelana ne-genome. Noma kunjalo, kokubili ukuhlolwa kofuzo lomthengi kubalulekile ngekusasa lokunakekelwa kwezempilo, futhi inselele manje ukuthi ukuvikela kanjani ukuzazi komuntu ngenkathi unikela ocwaningweni.

Umthelela ophazamisayo

Ukuhlolwa kofuzo kwe-Direct-to-consumer (DTC) kuvumela abantu ngabanye ukuthi bafunde ngofuzo lwabo bentofontofo yamakhaya abo esikhundleni sokungena elebhu. Nokho, lokhu kuye kwaphumela ezinkingeni ezithile. Isibonelo, kumawebhusayithi wofuzo njenge-23andMe noma i-AncestryDNA, ubudlelwano obumayelana nokutholwa kwangasese buye kwavezwa ngedatha yabo yofuzo. Ngaphezu kwalokho, ukucatshangelwa kwezimiso zokuziphatha okuzungeze izakhi zofuzo kushintshile ekubeni kakhulukazi engxoxweni yokuthi yini engcono kakhulu emphakathini kuya ekukhathazekeni ngokuvikela amalungelo obumfihlo ngabanye. 

Amanye amazwe, njengeNgilandi (kanye neWales), anqume ukuvikela ngokusobala ubumfihlo bofuzo, ikakhulukazi uma kuthinta izihlobo zomuntu. Ngo-2020, iNkantolo Ephakeme yabona ukuthi odokotela akumele bacabangele nje izithakazelo zeziguli zabo lapho benquma ukuthi bazoludalula yini ulwazi noma cha. Ngamanye amazwi, umuntu akuvamile ukuba kube nguyena kuphela umuntu onentshisekelo yofuzo, umbono wesimilo owasungulwa kudala. Kusazobonakala ukuthi amanye amazwe azolandela yini.

Enye indawo eshintshwa ukuqashelwa kofuzo ukunikela ngesidoda namaqanda. Ukuhlolwa kofuzo kwezentengiso kwenze kwaba nokwenzeka ukulandelela umlando womndeni ngokuqhathanisa isampula yamathe kusizindalwazi sokulandelana kwe-DNA. Lesi sici siphakamisa ukukhathazeka ngoba abanikela ngesidoda namaqanda kungenzeka bangasakwazi ukungaziwa. 

Ngokusho kwephrojekthi yocwaningo lwase-UK i-ConnectedDNA, abantu abazi ukuthi bakhuliswe ngabanikezeli basebenzisa ukuhlolwa kofuzo kwabathengi ukuze baqoqe ulwazi olumayelana nabazali babo babazala, izingane zakubo, kanye nezinye ezingase zibe izihlobo. Baphinde bafune ulwazi olwengeziwe mayelana namagugu abo, okuhlanganisa ubuzwe kanye nobungozi bezempilo obungaba khona esikhathini esizayo.

Imithelela yokuqashelwa kofuzo

Imithelela ebanzi yokuqashelwa kofuzo ingabandakanya: 

• Imininingo egciniwe yofuzo isetshenziswa ukubikezela kusengaphambili amathuba okuthi umuntu athole izifo ezinjengomdlavuza, okuholela ekuxilongweni kusenesikhathi kanye nezindlela zokuvimbela.
• Izikhungo zomthetho ezisebenzisana nezinkampani zesizindalwazi sofuzo ukulandelela abasolwa ngolwazi lwabo lofuzo. Kodwa-ke, kuzoba nokududuzwa kwezinhlangano ezilwela amalungelo abantu.
• Amafemu emithi akhuthaza izinkampani zokuhlola izakhi zofuzo ukwabelana ngemininingwane yazo yofuzo ukuze kuthuthukiswe izidakamizwa. Lokhu kubambisana kube nabakugxekayo abacabanga ukuthi kuwumkhuba ongekho emthethweni.
• Khetha ohulumeni abasebenzisa i-biometrics ukuze baxhumanise ukutholakala kwezinsizakalo zikahulumeni ku-ID yomuntu wekhadi elizogcina lifake idatha yabo eyingqayizivele yofuzo neye-biometric. Izinsiza eziningi zezezimali zingase zilandele umkhondo ofanayo wokusebenzisa idatha yofuzo ehlukile yezinqubo zokuqinisekisa umsebenzi emashumini eminyaka azayo. 
• Abantu abaningi abafuna obala ukuthi ucwaningo lwezakhi zofuzo lwenziwa kanjani nokuthi ulwazi lwabo lugcinwa kanjani.
• Amazwe abelana ngemininingwane yofuzo ukuze akhuthaze ucwaningo lokunakekelwa kwezempilo nokudala imithi elinganayo kanye nokwelapha.

Imibuzo okufanele icatshangelwe

• Iyiphi enye indlela ukuqashelwa kofuzo kungabangela ukukhathazeka ngemithetho yobumfihlo?
• Yiziphi ezinye izinzuzo ezingaba khona nezinselele zokuqashelwa kofuzo?