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McElroy 1 Austin McElroy Dr. Schnee & Dr. Idziak HV Cluster 12/2/16 Prenatal Testing of Beta Thalassemia in China Beta Thalassemia is a disorder that affects red blood cells. The defect occurs most frequently in Mediterranean countries, North Africa, the Middle East, India, Central Asia, and Southeast Asia. China has had a rough time determining how to deal with the beta thalassemia. In China th
  McElroy 1Austin McElroyDr. Schnee & Dr. Idziak HV Cluster 12/2/1!renatal estin# o$ %eta halasseia in China%eta halasseia is a disorder that a$$ects red 'lood cells. he de$ect occurs ost$re(uently in Mediterranean countries) *orth A$rica) the Middle East) India) Central Asia) andSoutheast Asia. China has had a rou#h tie deterinin# ho+ to deal +ith the 'eta thalasseia.In China there has 'een any studies lookin# at the e$$ects o$ ,renatal #enetic testin# $or thedisease. he ethical (uestion o$ this ,a,er is should there 'e andatory ,renatal testin# $or 'etathalasseia in China and should a'ortion ha,,en i$ the test is ,ositi-e. his ,a,er +ill use ,rinci,lis as the ethical theory that the ar#uents +ill 'e 'ased one) usin# the ,rinci,les o$  'ene$icence) nonale$icence) and autonoy to deterine to ethics o$ undertakin# ,renatal tests. his is 'ecause o$ their needs to 'e 'ene$icent to+ards the children that ha-e this disease. irst itis i,ortant to understand the thalasseia and kno+ 'oth the 'ene$its and costs o$ ha-in# it.%eta thalasseia is a #enetic disorder that reduces the ,roduction o$ an ironcontainin# ,rotein called Heo#lo'in. Heo#lo'in carries iron throu#h the 'lood strea. his is due toutations in the heo#lo'in su'unit 'eta 0H%% #ene) a #ene +hich includes the instructions $or creatin# 'eta#lo'in. hree 'eta#ol'in are e$$ected 'y the disease. +o o$ the 'eta #ol'in aredeleted +ith the third 'ein# utated 0enetics Hoe 3e$erence. he lack o$ these cells leads to$e+er red 'lood cells) +hich causes aneia and iron o-erdoses. he treatent o$ the disease can-ary 'ased o$$ its e4,ression o$ the #enes. or the ild -ersion o$ the disease the treatent isoccasional 'lood trans$usions or oral edication. here also are si,le solutions that can hel, tokee, the disease to a iniu) such as re#ular e4ercise and a diet that contains little iron. Morese-ere cases need re#ular 'lood trans$usions and ,ossi'ly 'one arro+ trans$usion. 5ithout  McElroy 2these treatents carriers o$ the disease can e4,erience iron o-erload) +hich causes trou'le heart)li-er) and endocrine syste) and 'e at #reater risk $or in$ection. he se-ere cases ha-e e-en ore ,ro'les. hose include enlar#ed 'ones and s,leen) slo+ed #ro+th rate) a'noral heart rhythsand con#esti-e heart $ailure 0Mayo Clinic. Ho+e-er it has 'een sho+n that the disease can 'eana#ea'le in all $ors and there is a decreased ortality rate i$ dia#nosed early. A lot o$ thesesy,tos and solutions coe $ro $irst +orld edical institutions 06al) oldrich) Haines)2711. Each year 87777 in$ants are 'orn +ith 'eta thalasseia and 287 illion ,eo,le arecarriers o$ #enes 0E Cousens) *icole E.) Clara 6. a$$) Syl-ia A. Metcal$e) & !eter Har,er)2717. !o,ulations in de-elo,in# areas) such as rural China) has seen any cases o$ 'etathalasseia.%eta halasseia 'een dia#nosed ,riarily in rural and de-elo,in# ,arts o$ south eastChina. 3esearchers in 2719 $ound that ,atients +ith 'eta thalasseia in uan#4i :huan# ,ro-ince o$ China had 8;.< o$ the deletional $or o$ the disease and 2=.=< had thenondeletional $or o$ the disease 0an#) Chen) :en#) ian) >ian#) 6i) Chen) Du and Chen) 2719. he 8;.< o$ those +ith 'eta thalasseia +ere dealin# +ith the ,ro'les o$ aneia and irono-erdoses. Most in China do deal +ith these issues +ith re#ular 'lood trans$usions 0Chan#an#6) Chunu 6) ?i 6) Min# 6. 2778. 3esearchers Chan#an# 6) Chunu 6) ?i 6) and Min# 6.02778 ha-e 'een studyin# 'eta thalasseia in south China and ho+ ,eo,le in those re#ions deal+ith the disease. here is also a $ocus o$ traditional Chinese her'al edication. or e4a,le theyuse @isuishen#4ue ranules) and her's such as sco,olaine and sodiu $erulateB 0,.977. his ,rolon#s the li$e s,an o$ the red 'lood cells. here is still the ,ro'le +ith the disease. hereason $or the s,read o$ thalasseia in these areas is due to the ,re-alence o$ alaria in these hotand huid cliates.  McElroy 9ne #rou, o$ researchers 06iao) :hou) ie) an#) 6i) 6i. 271= ran a andatory #enetictestin# on in$ants in uan#don# ,ro-ince. he testin# +as done $ro >anuary 2717 to Dece'er 2711. he t+o 'i##est +ere uan#4i) +ith =8 out o$ 2= testin# ,ositi-e) and uan#don#) +ith=82 out o$ =)91 testin# ,ositi-e. he rest o$ the ,ro-idences screened had less than 17< tested ,ositi-e. Soe o$ the ,ro-idences +ith lar#e cities) such as Shan#hai) only had 1 tested and 1$ound ,ositi-e.Studies done $or testin# $or 'eta thalasseia in China ha-e 'een conducted a nuerousnu'er o$ +ays. ne research #rou, 0Chan#an# 6) et. al. 2778 discussed China usin# a t+oste, syste to test $or the disease in ne+'orns. he $irst screenin# is a red 'lood cell $ra#ilitytest) +hich has a $alse ne#ati-e ;..1< 0Chan#an# 6) et. al. 2778. he second ste, is a H'electro,horesis to con$ir ,ositi-e cases. his test can also iss H' H althou#h the researchdoes not include the statistics o$ ho+ any are issed 0Chan#an# 6) et. al. 2778. he ,ro'le is that there are any su'ty,es o$ thalasseia that akes it di$$icult to $ind carriers and+hat the e4,ressi-ity o$ the disease 0Chan#an# 6) et. al. 2778. he edical ,ro'les that thechild +ill ha-e to deal +ith also cannot 'e deterined 'y the test.3esearcher Slee'ooaulkner 02717 looked a assi-e nu'er o$ Chinese eu#enics ,re#nancy hand'ooks to deterine +hat ,re#nant +oen +ere learnin# a'out. Slee'ooaulkner $ound that in soe 'ooks @indi-iduals are encoura#ed to ake choices ad-anta#eous tothesel-es) +hile at the sae tie) and ore i,ortantly) su,,ortin# the collecti-e #oal o$ i,ro-in# the Chinese stockB 0,.191. A lot o$ the hand'ooks e,hasis #ettin# a ,renatalchecku, in order to ensure an @intelli#ent) 'eauti$ul) healthy and li-ely childB 0,.199. or theost ,art these hand'ooks e,hasize that China is a odern and ad-anced society that needs tocontinue to ad-ance in the odern +orld. $ course these social trends raise the issue that coe  McElroy =u, +ith testin# $or a #enetic disease. 5hile the child is not a noral @healthyB 'a'y it is still achild can #ro+ u, li-in# a li$e +ith a ana#ea'le condition. his ,a,er +ill use ,rinci,lis as the 'asis $or oral Fud#ent on andatory ,renataltestin# o$ 'eta thalasseia in China. !rinci,lis is a set o$ @#eneral #uidelines $or the $orationo$ the ore s,eci$ic rulesB 0%eaucha, & Childress. 2771. ,.12 and are @intended to e4,ress#eneral nors o$ the coon orality that are a suita'le startin# ,oint $or 'ioedical ethicsB0%eaucha, & Childress. 2771. ,.12. here are $our oral ,rinci,les that one has to a,,ly+hen akin# a oral decision. hey are res,ect $or autonoy) nonale$icence) 'ene$icence)and Fustice 0%eaucha, & Childress. 2771. his ,a,er +ill use three o$ ,rinci,les. 3es,ect $or autonoy) +hich eans that indi-iduals ha-e the ri#ht to ake an in$ored decision $or thesel-es. *onale$icence +hich eans that @one ou#ht not to in$lict e-il or harB0%eaucha, & Childress. 2771. ,.1;1. And 'ene$icence +hich has any ,arts that are @oneou#ht to ,re-ent e-il or harGone ou#ht to reo-e e-il or harGone to do or ,roote #ood0%eaucha, & Childress. 2771. ,.1;1. sin# these three ,rinci,les) 'ene$icence)nonale$icence) and autonoy the ethics o$ andatory ,renatal screenin# +ith the ,ossi'ility o$ a'ortion +ill 'e e4ained. here is a lot o$ ar#uents a#ainst usin# +estern ,hiloso,hy in China +hich does nothold the sae -alues as the +est. he 5estern ,hiloso,hy and Chinese ,hiloso,hy di$$er in +hatthey see as the ost i,ortant. or the Chinese it should 'e the state $irst rather than theindi-idual) +here in the 5est it is the o,,osite 03od#ers. 12. 5estern edicine is 'ased onthe ethics o$ 'ene$icence and nonale$icence. here is also a $ocus on the i,ortance o$ theri#hts o$ indi-idual. 5hile in China there is an e,hasis on the ideals o$ oral sel$disci,line. In#eneral the issue is that the Chinese ha-e an e,hasis that the indi-idual should 'e orally
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