Lock

Lock, Margaret, “The worth of human organs” en Human Body Parts as Therapeutic Tools: Contradictory Discourses and Transformed Subjectivities , Qualitative Health Research 12, 10, !iciem"re, 200#$, %%& 1'0#(1'1)&

Introduction *ur focus of attention is %rimaril+ on the vital technolog+ of organ transfer, that is, the location of “ ,onors, ” %rocurement of soli, organs, such as hearts an, ki,ne+s, an, their trans%lant into ailing reci%ients& -oli, organs ,o not regenerate liver an, lungs are %artial e.ce%tions in this res%ect if onl+ small "io%sies are remove,$, an, regulations a"out organ %rocurement are ver+ stringent in most countries& Moreover, technologies that allow the integrit+ of soli, organs to "e maintaine, outsi,e the human "o,+ for long %erio,s of time ,o not e.ist, a,,ing to the material limitations of these %ractices& *rgans for trans%lant / that is, soli, organs that are alive / cannot "e fractionate, or clone,, an, so have a limite, social life involving, with a few e.ce%tions, 0ust two human "o,ies& The result is that, in marke, contrast to technologies involving the use of s%erm an, human cells, there are finite limits to the num"er of organ trans%lants that can "e carrie, out, creating what is calle, a “ shortage of organs ” "+ %eo%le involve, with the trans%lant enter%rise& 1m%hasis will "e given in what follows to the wa+ in which technologies of organ transfer, %ro"a"l+ more than an+ other t+%e of "iome,ical technolog+, are fre2uentl+ associate, with e.%loitation of ,isa,vantage, %eo%les, a"ove all in situations where organ sales are common%lace, where social ine2uit+ an, %overt+ are wi,es%rea,, where no sociali3e, health care s+stem e.ists, an, where state regulation is ineffi cient or, worse, chronicall+ corru%t& 4ut there is also a %otential for trans%lant technologies to "ring a"out new forms of social soli,arit+ among ,onors an, reci%ients, although this %ossi"ilit+ is more often than not activel+ su%%resse, "+ organ %rocurement agencies in 5orth 6merica, 1uro%e, an, elsewhere, for fear that ,onor families might %ressure reci%ients into reci%rocating in some wa+ for their “ gift& ” 7e will also consi,er how trans%orting "o,+ %arts from one %erson to another has the %otential to "ring a"out %rofoun, changes in su"0ectivit+ in "oth ,onors if the+ are living$ an, in reci%ients& 6"ove all, trans%lantation inevita"l+ calls into 2uestion normative, culturall+ agree, ( u%on categories a"out what constitutes life an, ,eath, self an, other, gift an, commo,it+& *rgan sales in non ( 7estern settings will "e consi,ere, first in the ,iscussion that follows, in %art "ecause it is all too eas+ for man+ %eo%le to imagine that these %ractices have nothing to ,o with the organ trans%lant enter%rise as it is routinel+ carrie, out in the 7est, even though, me,ical tourism is on the increase& 8t is currentl+ estimate, "+ 7H* that one fifth of the 90,000 ki,ne+s trans%lante, worl,wi,e ever+ +ear come from the "lack market& :urthermore, ,ue to what is known in the trans%lant worl, as a “ shortage of organs, ” %ressures are increasing in the 7est, nota"l+ in the ;nite, -tates, to consi,er financial re%a+ments in e.change for organs that 1

can "e of use in the trans%lant enter%rise, making it all the more urgent to ,iscuss the effects on human relations of organ sales in countries where this %resentl+ takes %lace, whether the+ "e illegal, semi ( legal, or legal& Bioavailability – Who Becomes a Donor? The sale of soli, organs was ma,e illegal in 8n,ia in 1<<' following e.ten,e, ,e"ate in which numerous scan,als figure, %rominentl+& Recommen,ations followe, to limit ,onors to three classes of %eo%le= %atients ,iagnose, as "rain ,ea,, living relate, ,onors, an, a thir, categor+ of “ e.ce%tional ” cases that coul, "e authori3e, "+ s%ecial me,ical ( "ureaucratic committees& 8n writing a"out the situation in 8n,ia, the anthro%ologist Lawrence >ohen notes that after organ sales were outlawe,, in a ver+ short %erio, of time, "+ making use of the thir, categor+ of the e.ce%tion, it actuall+ "ecame easier for clinics an, "rokers to negotiate ki,ne+ sales than ha, formerl+ "een the case& >ohen ,ocuments the reasons for this situation, among which is reluctance on the %art of %otential reci%ients to %ut someone in their famil+ at risk if it is %ossi"le to arrange to "u+ a ki,ne+& 6lthough %otential reci%ients are concerne, a"out the sacrifice of their famil+ mem"er shoul, the+ "ecome a ,onor, it a%%ears that the+ are rather easil+ a"le to erase all thought of the sacrifice ma,e "+ a ki,ne+ seller& -ellers are "e+on, the %ale, outsi,e the network of relations where consi,eration is ,ue an,, what is more, not in a %osition to ,eman, an+ further form of re%a+ment in the future for their "eneficence, as might a famil+ mem"er& 4ut, of course, as >ohen makes clear, %eo%le who sell their ki,ne+s ,o so with the intention of su%%orting their families / their sacrifice is one "orn of ,es%eration& That this goes largel+ unnotice, "+ the reci%ient makes the transfer all the more %oignant& *nce the immunosu%%ressant ,rug c+clos%orine was %ut on the market in the later 1<90s it "ecame %ossi"le to trans%lant organs without %a+ing close attention to the immunological matching of ,onors an, reci%ients as ha, %reviousl+ "een essential, although the com%ati"ilit+ of "loo, grou%s continues to "e im%ortant& 4ecause "iological constraints were largel+ transcen,e, "+ c+clos%orine, %o%ulations of %otential ,onors were create, as a result of this new technolog+, willing to sell their organs on the "asis of economic nee, alone& >ohen, asking who "ecomes organ ,onors an, wh+, create, the conce%t of “ "ioavaila"ilit+ ” to encom%ass a range of harmful "o,il+ e.changes, among them organ trans%lants& 5ot sur%risingl+, a"ove all else it is %overt+ that ,rives "ioavaila"ilit+& >ohen un,ertook ethnogra%hic research in >hennai, 8n,ia, resulting in some trou"ling fin,ings& The women with whom he s%oke ha, all "een informe, that if the+ were going to sell a ki,ne+ then, for health reasons, the+ must first un,ergo tu"alligation& 8n fact, ever+ one of them ha, alrea,+ ha, “that o%eration& ” 8n much the same wa+ as Malthus ha, viewe, the ha"its of the 1nglish %easantr+ in the 1)th centur+, 8n,ian "ureaucrats, notes >ohen, "elieve that %oor women, "oth rural an, slum ,wellers are so given over to %assion an, unreason that their se.ualit+ must "e controlle, / in the 8n,ian 2

case through sterili3ation& 6 “ logic of o%era"ilit+ ” takes over, an, a form of governmentalit+ is enacte, to transform such women into citi3ens who "ehave in a correct manner for mo,ern 8n,ia / in,ivi,uals who are rational an, controlle,, al"eit, in this case, through enforce, control of their re%ro,uctive lives& 4+ selling a ki,ne+, these same women are %erforming what the+ "elieve is in their own "est interest as 8n,ian citi3ens, that is, the ho%e of securing the future of their families& Their men folk ,o not like to sell their organs / the+ are “unmanne,” "+ the o%eration, an, the+ must work? "ut so too ,o the women have to work& >ohen foun, that most of the mone+ that results from sale of an organ in >hennai, a"out @1,200 for a ki,ne+ in the late 1<<0s, was use, to re%a+ high interest loans / “,e"t "on,age in which mone+ %asses from the %atient to the ,onor, an, to the mone+len,er an, other cre,itors&” 8f an+ is left over, it is use, for schooling, ,owries, an, other famil+ matters& 8nevita"l+ families get into ,e"t again, with onl+ the scar as a trou"ling remin,er of the sacrifice that can never "e re%eate,& *n the other han,, >ohen foun, that in rural 8n,ia men are more “ "ioavaila"le ” as organ sellers than are women& !e"t in agricultural areas usuall+ results from cro% failure, %rice colla%se, an, so on& :armers are willing to sell a ki,ne+ if it is going to get them through the emergenc+ of cro% failure? the+ sim%l+ go to !elhi, %erha%s without much reflection, an, sell a ki,ne+, although man+ live to regret it later& 8n ur"an >hennai, "+ contrast, women are on the s%ot an, no mone+ nee,s to "e s%ent on travel / the+ are the organ sellers of choice for families in which ,e"t is chronic an, constantl+ mounting& Aer+ few of the in,ivi,uals in 8n,ia who sell organs are given an+ me,ical follow ( u%, although the+ are often malnourishe, an, living in %ollute, environments, making them %articularl+ vulnera"le to su"se2uent illness& 4ut this is onl+ half the stor+& The ma0orit+ of %eo%le with en, ( stage renal ,isease in 8n,ia ,ie without a trans%lant "ecause the+ cannot affor, to go to the %rivate clinics where organs are availa"le for %urchase& >ohen notes with iron+ that in 8n,ia, ,ue to economic constraints, there is a shortage of reci%ients, an, not of ,onors& 6mong those %eo%le who have a trans%lant, man+ 2uickl+ fin, that the+ cannot affor, the me,ications that the+ must take, almost certainl+ for the rest of their life, in or,er to avoi, organ re0ection& The corru%tion an, scan,als associate, with virtuall+ all of the high ( en,, %rivati3e, me,ical clinics in 8n,ia where trans%lants take %lace is %art of a larger environment in which facilities for %rivati3e, me,ical care "ecame sites of investment an, monetar+ e.change in the 1<<0s& These “ %u"lic / %rivate assem"lages ” link “ me,ical institutions an, %olitical infl uence to various sources of ca%ital / li2uor, armaments, %harmaceuticals, an, B "lack mone+& C ” 9 8n,ivi,uals who must sell their organs in or,er to live "ecome %awns in this neo ( li"eral econom+ of self ( sacrifice, "ut all too often their sacrifice is ,ou"l+ in vain / the lives of "oth seller an, "u+er are usuall+ im%rove, onl+ for a short time, or not at all& 6slihan -anal C s research in Turke+ gra%hicall+ ,e%icts the ,ifficult+ of sustaining a satisfactor+ trans%lant %rogram in a countr+ "eset with D

insurmounta"le ,ifficulties that work against it& Trans%lants were first %ractice, in that countr+ in the mi, ( 1<90s an, soon receive, government su%%ort& !es%ite a collective effort in the following +ears to %ass a trans%lant law an, create an organ ( sharing network, lea,ing to the foun,ing of the Turkish trans%lant societ+ in 1<<0, the %rogram has not "een a success& 6mong the man+ factors contri"uting to this situation, -anal ,ocuments the following= ,ivisions among the trans%lant surgeons themselves, inclu,ing an unwillingness to have organs ,istri"ute, e2uita"l+ via the network? the creation of government ( su%%orte, %rivate hos%itals from earl+ in the 21st centur+ that s%eciali3e in trans%lants an, cater to the Turkish mi,,le classes, thus e.acer"ating the ine2uities alrea,+ %resent in the s+stem? a lack of %u"lic un,erstan,ing a"out "rain ,eath an, a strong resistance to mutilating a ,ea, "o,+, resulting in ver+ low rates of ca,aver ,onation? the clan,estine sale of organs among living relate, ,onors, although this is illegal? an, the ,ocumente, trafficking of organs among %eo%le in Turke+, Russia, 8n,ia, an, 8ra2, in which wealth+ Turks travel a"roa, to "ecome reci%ients an, wealth+ foreigners come to Turke+ to receive organs& :urthermore, there has "een inflammator+ me,ia re%orting a"out the Turkish trans%lant worl, in which one ,octor involve, in so ( calle, “ organ sales with consent ” is ,escri"e, as the “ organ Mafia ,octor ” an, is e.%licitl+ associate, with the criminal un,erworl, an, with wi,es%rea, corru%tion throughout the Mi,,le 1ast& 6lthough some as%ects of this stor+ amount to nothing more than rumor, this ,octor was caught in flagrante trans%lanting ki,ne+s from two Ealestinian ,onors into two 8sraeli reci%ients each of whom ,eclare, em%haticall+ that these were voluntar+ ,onations untainte, "+ the e.change of mone+& -anal also ,ocuments the sources of most ca,aver organs in Turke+= "o,ies of %eo%le confine, in as+lums, those who have committe, suici,e, an, those who ,ie in catastro%hes such as ma0or earth2uakes& -imilar to >ohen C s work in 8n,ia, this research in Turke+ makes it a"un,antl+ clear 0ust how ,ifficult it is to run an e2uita"le trans%lant %rogram in countries whose health care s+stems are chronicall+ un,erfun,e,? where national an, regional sta"ilit+ cannot "e taken for grante,? where enormous ine2uities e.ist within the countr+, an, corru%tion is common%lace& 1ven so, there are man+ me,ical %rofessionals in such countries who struggle to %rovi,e goo,, e2uita"le me,ical %ractice, usuall+ with relativel+ little rewar, for their ,e,ication& 6n article in the Clinical Journal of the merican Society of !ephrology ,escri"es an 8ranian mo,el of %ai, ki,ne+ ,onation using ,onors unrelate, to the reci%ient& This %rogram was a,o%te, in 1<)) with the result that "+ 1<<< the long waiting / list for ki,ne+ trans%lants in that countr+ was eliminate,& The !ial+sis an, Trans%lant Eatients C 6ssociation !6TE6$ in 8ran controls all transactions, an, no "rokers or other interme,iate agencies are involve,& Trans%lants can onl+ take %lace at s%ecifie, universit+ hos%itals, the e.%enses are full+ %ai, "+ the government, an, involve, ,octors receive no incentives of an+ kin,& *nce the ,onation is com%lete, the ,onor receives a monetar+ rewar, of a"out @1,200 an, free health insurance %ai, "+ the government& Most ,onors also receive a “ gift ” of '

mone+ from their reci%ient, "ut ,onors an, reci%ients cannot make in,e%en,ent arrangements %rior to the ,onation an, the transaction of the “ gift ” takes %lace un,er the aus%ices of the !6TE6& 8f the reci%ient is %oor, then the ,onor will receive a monetar+ gift from a charita"le organi3ation in a,,ition to "eing %ai, for the actual organ& The government su"si,i3es the cost of immunosu%%ressant me,ication for reci%ients& :oreigners are not allowe, to %artici%ate in this %rogram, although refugees from 6fghanistan living in 8ran can receive organs from 6fghan ,onors& -tatistics cite, in this article in,icate that "oth ,onors an, reci%ients come from all walks of life& Reci%ients who cannot %a+ for trans%lants are full+ su%%orte, "+ the government an, charit+, an, no %otential reci%ient is turne, ,own for economic reasons& *nl+ # %ercent of ,onors are illiterate an, more than #D %ercent have a high ( school e,ucation or more& There is no ,iscussion a"out what e.actl+ motivates ,onors& However, it is argue, that since the im%lementation of a s+stem of %ai, unrelate, ,onors, the coercion commonl+ re%orte, in families when relate, ,onors ha, to "e foun, has "een consi,era"l+ re,uce,& 6 law was %asse, in 2000 ena"ling ,onation from "rain ( ,ea, "o,ies, an, to,a+ a"out 12 %ercent of all ki,ne+ trans%lants make use of such organs& The authors of this article ,o not claim that the s+stem is without faults, "ut the+ argue that it is strictl+ regulate, an, that the former illegal tra,e in ki,ne+s has now "een eliminate, in 8ran& Eresuma"l+, given that the num"er of ,ial+sis %atients has gone ,own, the 8ranian government has ma,e consi,era"le savings in the overall health care "u,get& The anthro%ologist 5anc+ -che%er ( Hughes has written a"out “ trans%lant tourism ” un,ertaken "+ %otential "u+ers who cannot o"tain organs in their home countr+ an, are ,es%erate to "u+ one& These tourists come from %arts of the worl, where waiting ( lists are long, nota"l+ 5orth 6merica, 1uro%e, Fa%an, an, the Mi,,le 1ast, inclu,ing 8srael, a countr+ where most %eo%le are o%%ose, or reluctant to ,onate organs from "rain ( ,ea, relatives& The ma0orit+ of ven,ors live in 8n,ia, -outheast 6sia, an, 1astern 1uro%e& >ommo,ifie, ki,ne+s are the %rimar+ currenc+ in this form of e.change an,, as ,oes Lawrence >ohen, 5anc+ -che%er ( Hughes sets out to ma,e visi"le the clan,estine si,e of this activit+, a"ove all the “ living B su%%liers ” who %artici%ate in this %articular form of "io ( e.change& 7herever she goes to investigate this tra,e in various %arts of the worl,, ranging from Turke+ to the Ehili%%ines, -che%er ( Hughes fin,s that the ki,ne+ is use, as a “ collateral against ,e"t an, %enur+& ” 7hat is also striking is the failure, the “ intentional oversight ” on the %art of governments, law ( enforcement agencies, the res%ective me,ical %rofessions, an, ministries of health in the involve, countries, to halt these activities& -che%er ( Hughes C argument is that ,iscussion a"out altruism, autonom+, social 0ustice, an, the goo, societ+ that runs through "ioethical ,iscourse as it has evolve, in the 7est in connection with organ trans%lants is entirel+ ina%%ro%riate in situations where great %overt+ e.ists& Her %oint is that to imagine that the glo"al %rocurement of organs an, their sale can "e ,ealt with through careful regulation is at "est naive? this will not ha%%en G

an+ more than successful regulation of ,rug %e,,ling or trafficking of humans she insists, "ecause these activities are ine.trica"l+ entangle, in the criminal worl,, no ,ou"t accounting in large %art for wh+ so little is ,one to %revent the e.%loitation of organ sellers& -imilarl+, !as is critical of the wa+ in which a form of "ioethics groun,e, in the language of rights is increasingl+ a%%lie, glo"all+& -he argues that a language of rights masks the %olitics of violence an, suffering involve, in organ %rocurement, %articularl+ where gross ine2ualities are %resent, an, where "ri"er+ an, corru%tion are em"e,,e, in ,ail+ life an, in government circles& The %rocurement of "loo, is e2uall+ %ro"lematic in some %arts of the worl,& Richar, Titmuss C concerns a"out the sale of "loo, have, in the time of H8AH68!-, %rove, %ro%hetic& 8n rural Henan %rovince, >hina, "eginning in the earl+ 1<<0s, “ militar+ units, cash ( stra%%e, %rovincial health "ureaus, an, other intereste, %arties create, "usiness ventures to %rocure an, resell "loo, %lasma for "oth ur"an an, international markets& ” The ,onors, #0 %ercent of whom were women, were %ai, "etween @2&'0 an, @2'&00 %er ,onation& Man+ ,onate, twice a week an, some %erha%s ,ail+& The "loo, was not teste, for H8A, an, at man+ of the collection centers it was %oole, "+ t+%e? %lasma an, "loo, cells were then se%arate, / the %lasma "eing harveste, for resale an, the "loo, cells rein0ecte, into ,onors in or,er to kee% them health+ for the ne.t roun, of %lasma ,onation& These %ractices, com"ine, with %oor sterili3ation techni2ues, le, in some villages to H8A infection rates of "etween #0 %ercent an, )0 %ercent among a,ults, leaving shortl+ thereafter thousan,s of or%hans in nee, of care& 5ot until 1<<) ,i, the >hinese government outlaw for (%rofit "loo, centers an, finall+, following an international outcr+, make some efforts to enforce the law& Iathleen 1rwin highlights the ine2uit+ at work in "loo, ,onation in >hina& -he notes that the “ iron rice "owl, ” the social safet+ ( net that was in %lace throughout >hina until 0ust a few +ears ago, is no longer in e.istence, leaving ,es%erate villagers una"le to meet their "asic nee,s& 4loo,, long thought of as a vital, almost sacre, essence in >hina, is not something that is easil+ relin2uishe, an, woul,, un,er "etter circumstances, "e inaliena"le& 6ccounts such as these, in which the sale of tissue an, organs necessaril+ onl+ occurs in the "lack market an, cannot "e ,isassociate, from %overt+, a%%ear to "e at a far remove from the voluntar+ ,onation of "loo, that most of us ,o from time to time, or from the signing of a ,river C s license to state that one is willing to ,onate organs& 4ut "oun,aries of man+ kin,s ,issolve in the a%%lication of "iome,ical technologies, es%eciall+ with glo"ali3ation, an, what is routini3e, an, regulate, in the 7est cannot "e ,issecte, out cleanl+ from the glo"al econom+ of e.change& 6s me,ical tourism stea,il+ increases, the inter,e%en,ence of 5orth an, -outh is lai, "are, as is the wa+ in which neo ( li"eral economies e.acer"ate ine2uities within ,emocracies an, among countries whatever their form of government& A Shortage of Organs

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The i,ea of organ trans%lants, a %ervasive fantas+ from m+thological times, "ecame a via"le %ossi"ilit+ onl+ after 6le.is >arrol, the 1<1D 5o"el Eri3e winner for me,icine, showe, that not onl+ coul, cells an, tissues "e ke%t in sus%en,e, animation "ut the+ coul, also "e ma,e to function an, re%ro,uce in,e%en,entl+ of the ,onor "o,+& 1.%erience ,erive, from treating "a,l+ woun,e, "o,ies in 7orl, 7ar 8 %rovi,e, further technological insights "ut, even so, in the first half of the 20th centur+ successful trans%lantation was limite, to autografts self ( grafts$& 6ttem%ts at allografts, from one in,ivi,ual to another, or .enografts cross s%ecies$, were ,oome, to failure until the 1<G0s, ,es%ite a consi,era"le amount of e.%erimentation& 8n a,,ition to technological ,eficiencies, numerous %hiloso%hical an, ethical issues were raise, a"out these %ractices until well into the mi,,le of the 20th centur+& 8n "oth Earis an, 4oston, where trans%lant technolog+ was strongl+ %romote,, it was argue, that organ trans%lants “ transcen,e, the laws of nature ” an, ,esecrate, the human "o,+& !rawing on the results of e.tensive animal e.%erimentation, in 1<G' the first successful ki,ne+ trans%lant was carrie, out "etween i,entical twins& 6nimal e.%erimentation also increase, knowle,ge a"out the immune s+stem an, recognition of the im%ortance of long ( term immunosu%%ression of the reci%ient C s "o,+ "+ means of me,ication& However, throughout the 1<#0s immunosu%%ressant use ha, mi.e, success, an, onl+ after the ,evelo%ment of c+clos%orine in 1<9) was it %ossi"le to routini3e organ trans%lant technolog+& The %ractice of trans%lant technolog+ is entirel+ ,e%en,ent in 1uro%e, 5orth 6merica, 6ustralasia, Fa%an, -outh 6merica, an, in man+ other countries u%on voluntar+ ,onations, an, ever+where human organs are thought of as scarce commo,ities& 6 meta%hor of a “ shortage ” of organs, firml+ em"e,,e, in trans%lant ,iscourse, is so %owerful that it affects "oth the market value of human "o,+ %arts an, the glo"ali3ation of the enter%rise& 8n,ee,, to,a+ the claim is often ma,e that there is a growing shortage of organs for trans%lant& The assum%tion "ehin, this claim is that voluntar+ ,onation rates have ,ecline, in recent +ears& There is no ,ou"t that waiting ( lists for organs, es%eciall+ ki,ne+s, are long an, growing, however, this state of affairs can "e accounte, for in other wa+s than %u"lic reluctance to ,onate& :irst, there are fewer car acci,ents than was the case 20 +ears ago, ,ue to "etter automo"ile safet+ ,evices& -econ,, trauma units are much more effective in %reventing %atients with traumati3e, "rains from "ecoming "rain ,ea,, an, therefore can,i,ates for organ ,onation& Thir,, as is well ,ocumente,, the %o%ulation of technologicall+ a,vance, societies is aging ra%i,l+& These changes mean that the %otential ,onor %ool has stea,il+ ,ecline, over the %ast two ,eca,es& *n the other si,e of the e2uation, the ,eman, for organs has increase, "ecause the %o%ulation is aging& Moreover, mounting cases of en, ( stage ki,ne+ an, liver ,isease are ,ue not onl+ to an aging %o%ulation, "ut to com%lications associate, with increasing rates of ,ia"etes an, he%atitis > among +ounger %eo%le the latter "eing largel+ as a result of ,rug in0ections$& These are ,iseases associate, with %overt+ an, social ine2ualit+, man+ of which coul, "e 9

%revente,& :urthermore, the num"er of %atients ,eeme, eligi"le to "ecome trans%lant reci%ients has increase, e.%onentiall+ over the %ast ,eca,es& This situation is a ,irect conse2uence of ,ecisions ma,e "+ committees constitute, "+ trans%lant communities an,, increasingl+, of %u"lic e.%ectations& The result is that making trans%lants availa"le for tin+ infants, for in,ivi,uals over )0, an, for %atients with co ( mor"i,ities is now taken for grante,& :urthermore, secon, or thir, trans%lants are routinel+ carrie, out when earlier ones fail& 8n other wor,s, the trans%lant worl, has "roa,ene, its sights, an, has itself increase, the “ nee,, ” at a time when there are man+ fewer %otential ,onors& This ,iscre%anc+ goes virtuall+ unnotice, in the official ,iscourse a"out trans%lantation& *ne result of the growing “ nee, ” for organs is that, whereas until recentl+ organs were %rocure, %rimaril+ from "rain ( ,ea, ,onors, in the ;nite, -tates, as of 2001, more than G0 %ercent of organs are ac2uire, from living ,onors an, it has "een shown that the+ function much "etter than ,o those taken from "rain ( ,ea, "o,ies& 6 secon, result is that ,es%erate %atients are increasingl+ likel+ to consi,er trans%lant tourism& Running through ,e"ates a"out an organ shortage are several assum%tions= :irst, organs go to waste if not ,onate,, an, ever+ citi3en shoul, "e willing to contri"ute to their use in the trans%lant enter%rise& -econ,, an, associate, with the first assum%tion, is the "elief that organs are sim%l+ mechanical entities whose worth is entirel+ without s+m"olic or affective meaning& Thir,, is that making a ,iagnosis of "rain ,eath is straightforwar, an, easil+ acce%te, as human ,eath "+ ever+one involve, an,, moreover, families shoul, "e willing to interru%t the grieving %rocess for u% to 2' hours while organs are %rocure,& 6 further %resum%tion is that ,onation, "eing eminentl+ worthwhile, is likel+ to assist families in the mourning %rocess& *ne wa+ of thinking a"out these assum%tions is that, im"e,,e, in them, are moral %ositions that it is %resume, are share, "+ all / in other wor,s, an une.amine, hegemon+ a"out the value of organs an, their aliena"ilit+ is at work& 6n, from the %oint of view of %otential reci%ients an, their close relatives these assum%tions a,, u% for man+ to a sense of entitlement& -haron Iaufman an, co ( authors argue that the shortage of organs an, the increase in the num"er of organs o"taine, from living ,onors have o%ene, u% “ new ,imensions ” to intergenerational relationshi%s& The clinic, %atient, an, %atient C s famil+ together "ring a"out a "on, "etween "iological i,entit+ an, human worth, “ a ,eman, for an ol, age marke, "+ somatic %lia"ilit+ an, renewa"ilit+, an, a claim of res%onsi"ilit+ that merges the B right to live C an, B making live& C ” 1.%ectations for a long life facilitate, "+ me,ical assistance if necessar+ are firml+ entrenche, in 6merican mi,,le ( class societ+ to,a+& *ne e.%ression of this is that the num"er of ki,ne+s trans%lante, into %eo%le age, #G an, over in the ;nite, -tates from "oth live an, ca,aver ,onors has increase, stea,il+ ,uring the %ast two ,eca,es& 6s a result of ethnogra%hic research, Iaufman an, colleagues foun, that man+ mi,,le ( age, %eo%le "elieve that ,onating a ki,ne+ can actuali3e their love for a %arent or another senior relative& !onation is the “ natural ” thing to ,o, an, it is sim%l+ not acce%ta"le in an age of trans%lant )

technolog+ to sit "+ watching a %arent ,ie an, ,o nothing& 6mong the seniors themselves, once the %ossi"ilit+ of a trans%lant is aire, "+ their relatives, for man+, "ut not all, the i,ea of a trans%lant "ecomes eminentl+ thinka"le& This research, carrie, out in >alifornia at ma0or hos%ital centers, leaves rea,ers won,ering if this new “ ethical fiel, ” is ,istri"ute, e2uall+ across the ;nite, -tates an, among all kin,s of %eo%le& *ne thing is evi,ent from the statistics in the ;nite, -tates an, elsewhere, women "ecome ,onors much more often than ,o men& The fin,ings of Iaufman et al& clearl+ illustrate one reason wh+ there is a “growing ” shortage of organs, an, leave rea,ers in no ,ou"t that the moral econom+ associate, with health care an, aging is heavil+ weighte, towar, life e.tension regar,less of cost, at least for %atients who are conscious an, whose “ %ersonhoo, ” is in no ,ou"t to famil+ mem"ers& 6 ne.t ste% woul, "e to follow u% on el,erl+ organ reci%ients an, fin, out what ha%%ens when the+ e.%erience organ re0ection& !o reci%ients then start to think more along the lines taken "+ man+ reci%ients in Fa%an, Me.ico, an, elsewhere as we will see "elow$, that is, to feel intense guilt for having unnecessaril+ ,amage, the health+ "o,+ of the ,onor, whether %arent, si"ling, or a,ult chil,J 4efore continuing this line of ,iscussion we will consi,er the conce%t of “ "rain ,eath& ” 8n most countries where voluntar+ ,onation of organs is the norm, organs are %rocure, from "oth living ,onors an, from what are known as “ "rain ( ,ea, ” ,onors, although the res%ective %ro%ortion of living an, "rain ( ,ea, ,onors varies consi,era"l+ from countr+ to countr+& 8n the following section we turn to a consi,eration of "rain ,eath / a new ,eath invente, in the latter %art of the last centur+ in or,er that organs, alrea,+ thought of '0 +ears ago as a scarce resource, can "e %rocure, legall+ for trans%lant& Inventing a New Death 7ith mo,ernit+, i,eas a"out life an, ,eath an, associate, "eliefs of transcen,ence were ,isentangle, from the realm of the sacre,& 6s %art of this transition, from the mi,,le of the 1<th centur+, ,eath an, its legal ,etermination were ma,e into a me,ical matter& The %ronouncement of ,eath "+ a %h+sician signale, the simultaneous ,emise of "o,+ an, %erson for all "ut the %ious, an, "iological ,eath "ecame, ipso facto , the en, of all life& 4ut it has "een argue, that this secular vision o%ene, u% a frightening voi,, for in theor+ life no longer ha, an+ meaning other than the achievement of mun,ane, earthl+, satisfactions& :reu,, Hei,egger, 1rnest 4ecker, an, other late 1<th ( an, earl+ 20th ( centur+ intellectuals %osite, that, with seculari3ation, kee%ing ,eath at "a+ "ecame a source of meaning in life / that i,eas a"out transcen,ence were internali3e, an, in,ivi,uali3e,, an, the “ soul ” was ,is%lace, "+ the self ( reflective, rational min, so characteristic of mo,ern societ+ in the 7est& 6nother change "rought a"out "+ seculari3ation was that the life course of in,ivi,uals "egan to "e conce%tuali3e, as a finite unit of "iological time, rather than, as was formerl+ the case, as contri"uting %rimaril+ to transcen,ental intergenerational ties linking the living an, the ,ea,&

<

7ith the ,evelo%ment of intensive care an, trauma units re%lete with "atteries of technological ,evices, the relationshi% among life, ,eath, an, transcen,ence, assume, to have "een thoroughl+ com%artmentali3e, an, seculari3e,, "ecame confuse,& 7hereas for a centur+ or more, making a ,istinction in the me,ical worl, "etween a living in,ivi,ual an, the fi nalit+ of ,eath ha, usuall+ "een unam"iguous "ut not inevita"l+ so$, with the ,evelo%ment of certain new technologies this was no longer the case& 6mong them, a technolog+ that came into routine use from the mi,,le of the 20th centur+ is the artificial ventilator, a ,evice that ena"les %atients to "reathe when the+ can no longer ,o so in,e%en,entl+& The %resence of this machine means that intensive care unit 8>;$ s%ecialists are often ,ealing with entities sus%en,e, "etween life an, ,eath& These “ living ca,avers, ” as the+ were known when first formall+ recogni3e, in the me,ical worl,, are usuall+ la"ele, to,a+ as “ "rain ,ea,& ” 7ith technological su%%ort, the "o,il+ organs of such c+"orgs function close to “ normal, ” "ut their min,s have suffere, an “ irreversi"le loss of consciousness ” leaving the former %atient with no awareness or %ossi"ilit+ for continue, "o,il+ functioning in,e%en,ent of a machine&8n 1<#9 the flam"o+ant -outh 6frican surgeon, >hristiaan 4arnar, took the worl, "+ storm when he %erforme, what was toute, as the worl, C s first human trans%lant& 8t was imme,iatel+ clear to involve, me,ical s%ecialists that if trans%lants were to "ecome %art of regular clinical care, then organs woul, have to "e ma,e routinel+ availa"le, an, clearl+ the+ coul, not come from or,inar+ ca,avers in which the material "o,+ was no longer functioning effectivel+& 6lmost overnight, the organs of %atients ,iagnose, as “ irreversi"l+ comatose ” "ecame targets for %rocurement, "ut "efore this coul, "e accom%lishe, a new, legall+ recogni3e, ,eath ha, to "e invente,& 6 com%le. con0unction of events an, technologies must intersect in the creation of “ living ca,avers& ” :irst, an “ acci,ent ” must take %lace / an automo"ile or a %lane crash? a ,rowning? a conflagration causing smoke inhalation? a ma0or "low to the hea,? or a “ cere"ral acci,ent ” in which the "rain su,,enl+ floo,s with "loo,& These acci,ents fre2uentl+ result, some of them inevita"l+ so, in ma0or trauma to the "rain& 4rain trauma is also cause, "+ other acci,ent ( like events, among which gunshot woun,s to the hea, or suici,e attem%ts are the most common& More often than not victims of such severe trauma, "ecause the+ can no longer "reathe for themselves, cannot survive without the ai, of an arra+ of technologies, among which the artifi cial ventilator is in,is%ensa"le& The ventilator, together with the res%onsi"le 8>; staff, "ecomes, in effect, a simulacrum for the functioning of the lower "rain stem, an, takes over the involuntar+ task of "reathing for %atients who are no longer a"le to co%e in,e%en,entl+& >ertain of these in,ivi,uals will make a %artial or com%lete recover+, "ut the hearts of others sto% "eating, or their "loo, %ressure ,ro%s irrevoca"l+, an, their "o,ies then ,ie in s%ite of the ventilator& :or a thir, class of %atients, resuscitative measures are onl+ a “ %artial success, ” so that with the assistance of the ventilator, the heart an, lungs of such %atients can "e ma,e to continue to function, "ut the "rain "ecomes irreversi"l+ ,amage, resulting in a %ermanent loss of consciousness& 10

>reation of the conce%t of “ irreversi"le coma ” in 1<#<, later mo,ifie, to “ whole "rain ,eath ” in 1<)1 "+ the ;niform !etermination of !eath 6ct in the ;nite, -tates, %ermitte, the %rocurement of organs for trans%lant from %atients in this con,ition on the groun,s that the+ are ,ea,& -imilar laws have "een %asse, in other countries where "rain ,eath is recogni3e, as the en, of human life& Making sure that ,eath has taken %lace, an, that in,ivi,uals are not sim%l+ un,ergoing tem%orar+ soul loss or the like, has long "een a concern / so much so that in man+ me,ieval 1uro%ean societies in,ivi,uals were thought of as ,ea, onl+ when %utrefaction ha, set in& *nce the me,ical worl, wreste, the %ronouncement of ,eath from the religious ,omain an, insiste, on the infalli"ilit+ of their metho,s of assessing "iological ,eath, %u"lic concerns a"out wrongful ,etermination of ,eath an, %remature "urial, ver+ common in the 1<th centur+, ,iminishe, "ut ,i, not ,isa%%ear entirel+$& The creation of ventilator ( ,e%en,ent "rain / ,ea, "o,ies elevate, similar concerns once again, "ecause a %ressure of time comes into %la+ if organs are to "e %rocure, from the "rain ,ea,& :or trans%lants to "e successful, organs must "e %erfuse, with a%%ro%riate flui,s to kee% them “ normal ” as soon as is e.%e,ient after the ,eclaration of ,eath, an, famil+ %ermission to take organs has "een grante,& 8n or,er to achieve a timel+, legal, ,eath, whole "rain ,eath is %ronounce, when, on the "asis of neurological an, other tests, it can "e ,etermine, with certaint+ that a %atient will never recover consciousness, even though, with the ai, of the ventilator, the heart continues to "eat& This clinicall+ esta"lishe, moment is locate, as earl+ as %ossi"le along a recogni3a"le continuum of ,+ing& Erocurement of organs from the "rain ,ea, an, their trans%lantation into ,+ing %atients is a 2uintessentiall+ mo,ern, utilitarian e.ercise, in which the living "o,ies of ,ea, %ersons are commo,ifie, for thera%eutic %ur%oses& *nce legall+ recogni3e, as the en, of human life, "rain ( ,ea, "o,ies at once "ecame a scarce resource, rigorousl+ monitore, an, manage, "+ the international me,ical communit+ / a "ioavaila"le %o%ulation of invalua"le entities for the trans%lant en,eavor, on occasion also use, for e.%erimental %ur%oses& ;se of living ki,ne+ ,onors has increase, e.%onentiall+ in 1uro%e an, 5orth 6merica in recent +ears, "ut %rocurement of organs from "rain ( ,ea, ,onors has also "ecome in,is%ensa"le to the success of the trans%lant worl,, %articularl+ in connection with hearts, livers, an, lungs, "ut also for ki,ne+s, an, for other organs less often trans%lante,& he !ood " as " Dead 4rain ,eath constitutes a ra,icall+ new form of soul loss, not a tem%orar+ %henomenon "ut a %ermanent loss of what is usuall+ un,erstoo, as the %erson from their living "o,+& This "etwi.t an, "etween con,ition creates ,iscomfort for man+ involve, health care workers an, families alike, an, is not what most in,ivi,uals woul, intuitivel+ recogni3e as ,eath, "ecause the "rain ,ea, are warm, have a goo, color, urinate an, ,efecate, have a %ulse, an, continue to "reathe& !ue in %art to the am"iguous con,ition of the "rain 11

( ,ea,, it is customar+ to soften the realit+ of this technologicall+ orchestrate, ,eath an, to ,raw on %remo,ern tro%es to encourage ,onation, inclu,ing the i,ea that ,onors ma+ “ live on ” in the "o,ies of reci%ients& 1ven so, nearl+ G0 +ears after the recognition of "rain ,eath as a ,iagnostic categor+, a goo, num"er of families refuse to agree to the ,onation of the organs of their "rain / ,ea, relatives "ecause the+ sim%l+ ,o not "elieve that the %erson l+ing in front of them, giving ever+ a%%earance of "eing aslee%, is in,ee, irreversi"l+ unconscious an, entirel+ "e+on, ho%e& *nl+ G0 %ercent of families a%%roache, to ,onate organs in the ;nite, -tates agree to ,o so& :urthermore, cor%ses continue to generate feelings of awe, res%ect, an, often ,rea, in the min,s of man+ %eo%le& -urve+s in -we,en, Fa%an, an, the ;nite, -tates have shown that a goo, num"er of in,ivi,uals refuse %ermission for auto%sies an, for ,onation of organs "ecause the+ ,o not want their relatives to suffer an+ further %ain or in,ignit+& 6n, some %eo%le fear a form of retri"ution shoul, the living ( ,ea, "e ,efile,& 8t is not eas+ to "ecome inure, to the hybrid of the "rain ( ,ea, "o,+ as "eing no longer full+ human, an, research suggests that, even among those in the general %o%ulation who su%%ort organ ,onation, a goo, num"er ma+ think of the "rain ( ,eath con,ition as “ goo, ( as ( ,ea, ” rather than trul+ ,ea,& 6long this line, !on Foralemon has argue, that the failure of numerous %u"lic e,ucation efforts to su"stantiall+ increase organ ,onation rates in the ;nite, -tates suggests a tacit re0ection of the i,ea that "rain ,eath trul+ is ,eath& Eerha%s more sur%rising is that some me,ical %rofessionals who work most closel+ with "rain ( ,ea, %atients, when aske,, make it clear 0ust how ,ifficult it is to e2uate "rain ,eath with the en, of human life& :or one thing, all intensivists s%ecialists who work in intensive care units$ agree that the "o,+ is alive / it must "e if organs are to "e taken for trans%lant / "ut the+ also agree that the con,ition of "rain ,eath is irreversi"le an, that the %atient has suffere, an irreversi"le loss of consciousness& 7hen interviewe,, intensivists in 5orth 6merica state, that the+ talk to families in the following wa+# $ The things that make her her are not there an+ more, ” or, “ He C s not going to recover& !eath is inevita"le& ” *ne ,octor, who, in common with man+ of his colleagues, chooses not to sa+ ,irectl+ that the %atient is ,ea,, "ecause he %ersonall+ ,oes not "elieve this is the case, tells the famil+ firml+ that the %atient is “ "rain ( ,ea, ” an, that there is “ a"solutel+ no ,ou"t "ut that things will get worse& ” 6nother %h+sician %ointe, out that it is ,ifficult to assess what is "est to sa+ to the famil+, "ecause in most cases it is not known whether the+ have religious "eliefs= “ 8 "elieve that a “ humanistic ” ,eath ha%%ens at the same time as "rain ,eath& 8f 8 ,i,n C t "elieve this, then 8 coul,n C t take care of these %atients an, %ermit them to "ecome organ ,onors& :or me the chil, has gone to heaven or wherever, an, 8 C m ,ealing with an organism, res%ectfull+, of course, "ut that chil, C s soul, or whatever +ou want to call it, is no longer there& 8 ,on C t know, of course, whether the famil+ "elieves in souls or not, although sometimes 8 can make a goo, guess& -o 8 sim%l+ have to sa+ that “ Fohnn+ ” is no longer here”&

12

*n the other han,, several ,octors agree, that it is essential to take control to some e.tent when ,iscussing "rain ,eath with families& The+ suggeste, that families often fin, it ,ifficult to acce%t that there is no chance of a reversal, an, this is where the ,octor cannot affor, to a%%ear ,iffi,ent or to e2uivocate& However, as one intensivist note,= “ Kou can C t go "ack to the famil+ an, sa+ that their relative is "rain ( ,ea,, +ou C ve got to sa+ that the+ C re ,ea, / +ou coul, "e arreste, for messing u% on this& ” This ,octor recalle, that ,uring his training he ha, ,escri"e, a %atient as “ "asicall+ ,ea, ” to his su%ervisor who ha, a"ru%tl+ res%on,e, "+ insisting= “ He C s ,ea,& That C s what +ou mean, "asicall+& ” The task for intensivists, then, is to convince the famil+, even though their relative a%%ears to "e slee%ing, that he or she is, in fact, no longer alive? what remains is an organism or vessel that has suffere, a mortal "low& *n the "asis of ethnogra%hic work in the ;nite, -tates, Lesle+ -har% %oints out that the origins of organs taken from the "rain ,ea, for trans%lant are ,eli"eratel+ ,ehumani3e, an, saniti3e, in or,er to make conversations with families more comforta"le when ,onation is "eing consi,ere,& -he notes that man+ ,onor kin cannot acce%t the “ fact ” of a technologicall+ ,iagnose, ,eath an, entertain i,eas a"out more than one ,eath& 8t is commonl+ "elieve, among them that when "rain ,eath is ,eclare,, the %atient, having entere, a con,ition of an irreversi"le loss of consciousness is, in effect, “ sociall+ ,ea,& ” This knowle,ge %ermits families to coo%erate with ,onation& 4ut the+ also "elieve that the %rivate, in,ivi,uali3e, self continues to e.ist until the "o,+ can "e clearl+ i,entifie, as a ca,aver& 6ll of the ,octors an, nurses working in 8>;s at various sites in >ana,a an, 6merica agree,, when interviewe, "+ Lock, that once "rain ,ea,, a sensate, suffering in,ivi,ual has cease, to e.ist "ecause his or her min, no longer functions& However, some nurses continue to talk to "rain ( ,ea, %atients as the+ care for their "o,ies in %re%aration for organ %rocurement& 6lthough 8>; %ractitioners rarel+ have serious secon, thoughts a"out reversi"ilit+, it is also evi,ent that man+ of them continue to har"or some ,ou"ts a"out the con,ition of a recentl+ ,eclare, "rain ( ,ea, %atient, an, it is often those with the longest e.%erience who are willing to e.hi"it the most misgivings& 6n intensivist with over 1G +ears of e.%erience sai, that he often lies in "e, at night after sen,ing a "rain ( ,ea, "o,+ for organ %rocurement an, asks himself, “ 7as that %atient reall+ ,ea,J 8t is irreversi"le / 8 know that, an, the clinical tests are infalli"le& M+ rational min, is sure, "ut some nagging, irrational ,ou"t see%s in& ” These ,ou"ts, whether on the %art of 8>; %ractitioners or families, are rarel+ %u"licl+ acknowle,ge,, an, %rocurement of organs from the "rain ,ea, is a largel+ unchallenge, %art of routine me,ical %ractice in the 7est& 6lthough from the time that "rain ,eath was first recogni3e,, assertions were ma,e that it ,i, not constitute a ra,ical "reak with the usual me,ical ,eath signifie, "+ the ,emise of the car,io ( %ulmonar+ s+stem, time has shown that such claims are e2uivocal& 6%art from an+thing else, one or two %atients ,iagnose, as "rain / ,ea, have e.iste, on ventilator su%%ort for 1D

over a +ear, forcing some neurologists to ,eman, how such a con,ition can %ossi"l+ "e e2uate, with the en, of life& :urthermore, although the ventilator ,oes not ,etermine how %atients who are hooke, u% to it shoul, "e ,iagnose,, re%resente,, or treate,, without its e.istence this new ,eath coul, not have "een invente,& The h+"ri, of the "rain ( ,ea, "o,+ is worr+ing& 6s we have seen, man+ me,ical %ersonnel, although the+ ma+ well su%%ress their feelings, ,o in fact struggle, not with the conce%t or the vali,it+ of the ,iagnostic measures, "ut with the con,ition of the %atient, someone whose a%%earance is not 2uite ,ea, "ut whose gift of life must "e e.%e,ientl+ %rocure,& 8nevita"l+, anguishe, families too are fille, with am"ivalence? man+ ,o not easil+ share the moral econom+ ,ominant in "iome,icine, that "rain ,eath is the en, of human life, an, some have real ,ou"ts a"out the vali,it+ of the conce%t, making them unwilling to ,onate organs& 4ehin, their "acks, families such as these ma+ "e thought of as ungenerous an, irrational "+ the trans%lant communit+, the ma0orit+ of whom "elieve firml+ that organ trans%lants are an un2uestiona"le goo,, "ut an+ feeling %erson who has witnesse, %arents so""ing over their chil, kille, "+ a ,runken ,river ma+ not "e a"le to acce%t such an unreflective argument& *ver the +ears, refinements in neurological ,iagnostic categories "rought a"out the recognition of other con,itions in which a loss or %artial loss of consciousness is involve,, with the result that a growing num"er of %atients are thought of as goo, ( as ( ,ea,& This categor+ now inclu,es not onl+ those who "ecome "rain ,ea,, "ut also man+ thousan,s more in,ivi,uals in an+ given +ear, inclu,ing %eo%le in a “ %ermanent vegetative state, ” those with “ minimal consciousness, ” an, the severel+ ,emente,& >ommon to all these con,itions is that consciousness is fatall+ im%aire, an,, at a minimum, tu"e fee,ing an, constant care is re2uire,& However, in contrast to the "rain ,ea,, the ma0orit+ of these %atients "reathe without assistance, an, a few, even among those ,eeme, as ho%eless cases, make %artial or even full recoveries& -uch comatose "o,ies are no longer self ( regulating, so that “ normalc+ must "e "oth %ro,uce, an, regulate, "+ ,etaile, an, ongoing surveillance& ” -haron Iaufman has written a"out the wa+ in which the e.istence of such %atients is he,ge, "+ the s%ecter of litigation, of talk of rights, an, o"ligations to “ choose, ” accor,ing to whose "est interest is at stake& *ther factors that come into %la+ are a ,esire for some control over the im%ossi"le situation, an awareness of a time %ressure, an, ,e"ates among %rofessionals an, famil+ mem"ers a"out whether or not further treatment shoul, "e classe, as “ futile& ” 6 cluster of rhetorical ,evices use, in connection with comatose "o,ies makes it %ossi"le to consi,er such %atients as either living or ,+ing& Liven that a “ shortage ” of organs %lagues the trans%lant worl,, the logical ne.t ste% of visuali3ing %atients with e.treme neurological ,amage as %otential organ ,onors / as "ioavaila"le / is regularl+ aire, to,a+ in "oth the me,ical worl, an, that of "ioethic& Struggling for National %onsensus 1'

Research in several ,ifferent geogra%hical locations highlights how the linke, networks of organ ,onation, %rocurement, an, trans%lant can "e "locke, or facilitate, in a variet+ of wa+s& 6t issue is not %rimaril+ an a"sence of technical know ( how or e.%ertise, although a lack of facilities is certainl+ an im%e,iment, as we will see shortl+& 4ut %erha%s of even more signif+cance are cultural an, %olitical consi,erations& 6lthough the term “ "rain ,eath ” is use, as a ,iagnostic categor+ in me,ical %ractice aroun, the worl,, cross ( cultural research has reveale, that the meanings with which it is im"ue,, its significance in ,etermining the en, of human life, an, the actions that it authori3es, are not ever+where the same& The ,iagnosis of "rain ,eath ,oes not alwa+s signif+ the ,eath of a %erson, in the wa+ that the Harvar, committee originall+ inten,e,, nor even is it necessaril+ associate, with the en, of all ho%e of recover+& 1vi,ence of these cultural ,ifferences "ecame a%%arent when several countries, among them -we,en, Lerman+, !enmark, Fa%an, an, 8srael, ha, %rotracte, %u"lic ,iscussions commencing from the late 1<#0s as to whether or not ,eclaration of "rain ,eath coul, "e legall+ recogni3e, as the en, of human life& This is in striking contrast to 5orth 6merica, the ;nite, Iing,om, an, some other 1uro%ean countries where the overwhelming focus, %articularl+ in the me,ia, has "een on life ( affirming stories of organ reci%ients whose lives were save, as a result of a trans%lant& 8n these countries little or no %u"lic consi,eration has "een given to the invention of a new ,eath& 8n Fa%an, in striking contrast, a vitu%erative ,e"ate %ersiste, for over D0 +ears among law+ers, me,ical %rofessionals, intellectuals, an, mem"ers of the %u"lic in %rofessional forums an, the me,ia as to whether or not "rain ,eath coul, count as the en, of human life, a ,e"ate that far outstri%%e, %u"lic ,iscussion a"out an+ other "ioethical matter& 8n contrast to the attention given in 5orth 6merica an, elsewhere to organ reci%ients, the Fa%anese ,e"ate, known as n " shi no mondai the "rain ,eath %ro"lem$, has centere, on the vulnera"ilit+ of %otential ,onors an, the man+ %ossi"ilities for a"use of the ,+ing an, the ,ea,& 5umerous national o%inion %olls were carrie, out ,uring this time, the results of which are confusing an, make clear that there is no consensus on the matter& The %resent Fa%anese law on the su"0ect, enacte, onl+ in 1<<9, %laces me,ical interests secon, to famil+ concerns, an, recogni3es "rain ,eath as the en, of human life onl+ when the ,iagnose, %atient has given %rior notice of a willingness to ,onate organs an, the famil+ has co ( signe, the official ,onor car,& 6 "rain ( ,ea, in,ivi,ual who has not signe, a ,onor car,, or whose famil+ has not co ( signe, the car,, remains attache, to the ventilator, an, is not recogni3e, as me,icall+ ,ea,& 6s of mi, ( 200), it is re%orte, that '' %ercent of the %o%ulation has signe, ,onor car,s? however, organs have "een %rocure, from onl+ 0ust over )0 "rain ( ,ea, ,onors since the late 1<<0s& -everal factors have contri"ute, to this im%asse, %erha%s the most im%ortant "eing that a mur,er charge was lai, against the first ,octor who carrie, out a heart trans%lant in Fa%an / a %roce,ure that virtuall+ ever+one conclu,e, involve,, without ,ou"t, mal%ractice& 6 series of other mur,er charges were lai, against ,octors who %rocure, organs from "rain ( ,ea, "o,ies in the +ears "efore the 1G

legali3ation of recognition of "rain ,eath as the en, of human life, all of which were in the en, ,ro%%e,& *ther factors that aggravate, the situation inclu,e the following %henomena= a lack of trust on the %art of the %u"lic in the me,ical %rofession that has over the +ears "een involve, in several ma0or scan,als although %eo%le often trust their famil+ ,octor, the+ ,o not e.ten, that trust to the %rofession as a whole$? a conservative legal %rofession o%%ose, to the recognition of "rain ,eath as the en, of human life? wi,es%rea, %u"licit+ in connection with the o%inions of some well / known Fa%anese ,octors o%%ose, to the recognition of "rain ,eath? e.tensive me,ia criticism of hos%ital %ractices, %articularl+ in connection with efforts to %rocure organs? an, the mo"ili3ation of citi3en grou%s to "lock the recognition of "rain ,eath as an+thing other than a clinical con,ition& 12uall+ im%ortant are culturall+ informe, %ractices in connection with ,eath, nota"l+ the im%ortance of the famil+ in making en, of life ,ecisions? a wi,el+ share, un,erstan,ing that ,eath is a %rocess an, not an event? a reluctance on the %art of man+ Fa%anese ,octors to firml+ ,eclare that there is no ho%e of recover+ once "rain ,eath has "een ,eclare,? a concern on the %art of man+ %eo%le a"out the commo,ification of the "o,ies of their ,ecease, relatives? an, a strong resistance to “ gifting ” "o,+ %arts to strangers& Fa%anese %artici%ate e.tensivel+ in reci%rocal formali3e, gift e.change to %romote social soli,arit+ among networks of %eo%le known to each other, somewhat reminiscent of the situation ,escri"e, "+ Marcel Mauss for %remo,ern societies& ;ntil recentl+, gift giving entirel+ free of o"ligations an, networks of reci%rocit+ has not "een common in Fa%an, an, the i,ea of receiving an anon+mousl+ ,onate, organ with no e.%ectation of or %ossi"ilit+ for reci%rocation smacks of selfishness to some& There are also fears, as is the case in other countries, that a "rain ( ,ea, "o,+, e.hi"iting virtuall+ all the features of "iological life, is not ,ea,& >ertain ke+ commentators in Fa%an, o%%ose, to the recognition of "rain ,eath as the en, of human life, have argue, that "rain ( ,ea, "o,ies are mur,ere, when taken off ventilators& However, religious organi3ations have not "een outs%oken in these ,e"ates, rather, such reservations arise from what are assume, "+ man+ Fa%anese to "e rational, common (sense res%onses to an e.traor,inar+ technolog+ that a%%ears to threaten fun,amental moral or,er an, "asic human relations& *f course, "+ no means ,o all Fa%anese res%on, in the same wa+, hence the e.tensive %u"lic ,e"ates an, ,emonstrations, "ut the ,ominant i,eolog+ has in effect %revaile, until ver+ recentl+, even after the law ma,e organ %rocurement legal& Fa%anese neurologists working in 8>;s / even though the+ themselves are for the most %art a,amant that "rain ,eath has an un,enia"le finalit+ in,icating that the %erson no longer e.ists / "elieve that few Fa%anese can acce%t this realit+& Their ,ou"ts stem from their "elief that numerous Fa%anese ,raw a ,istinction "etween social an, %h+sical ,eath in which it is commonl+ thought that the social self %ersists after ,eclaration of "iological ,eath& 6s a result, the Fa%anese me,ical %rofession, e.ce%tionall+ %roficient with technological interventions of man+ kin,s, has "een force, to %ut most of its energies into trans%lants that make use of living relate, organ ,onors& 1#

7hen no living relate, ,onor is to "e foun,, Fa%anese %atients sometimes o%t to go a"roa, to "u+ organs at great e.%ense& These are organs taken from "rain ( ,ea, ,onors ,esignate, as “ sur%lus ” or unusa"le in the ;nite, -tates, 6ustralia, or elsewhere& *thers "u+ organs illegall+ in >hina or -outheast 6sia, to the ,isa%%roval of the Fa%anese government an, man+ of their fellow citi3ens& 8n Ful+ 200< the Law on *rgan Trans%lantation was rather su,,enl+ revise, an, will start to take effect in 2010& 8t will now "e %ossi"le for Fa%anese in,ivi,uals, regar,less of their age, to ,onate organs until this time it has "een im%ossi"le in Fa%an to %rocure organs from chil,ren un,er 1G +ears of age even with %arental %ermission$& *nl+ those in,ivi,uals who have activel+ refuse, to "ecome ,onors ahea, of time will not "e consi,ere, as ,onors, an, agreement of famil+ mem"ers to ,onation continues to "e necessar+& The Fa%anese %ress %oints out that the %ush to revise the law %ro"a"l+ gaine, momentum after the 7orl, Health *rgani3ation %ro%ose, in 2009 a restriction on %atients seeking trans%lants a"roa,& 6,,e, incentive for change ma+ have arisen "ecause some countries, such as Lerman+, have activel+ refuse, to consi,er Fa%anese %atients for trans%lants in their countr+& 8t will "e of great interest to see if the num"er of organ trans%lants carrie, out in Fa%an a total of D'G ever from "rain ( ,ea, ,onors$ increases as a result of a change in the law, an, "egins to a%%roach the rate of man+ thousan,s a +ear carrie, out in the 1uro%ean ;nion an, the ;nite, -tates& Eeo%le associate, with the far right of the %olitical s%ectrum in Fa%an are among those who over the +ears have vociferousl+ countere, the legal recognition of "rain ,eath& This t+%e of ,issent fee,s off nationalistic, anti ( 7estern sentiments, in which the uni2ueness of Fa%anese values is em%hasi3e,& -imilarl+, Hogle shows how ,is%utes in Lerman+ a"out the commo,ification of human "o,+ %arts an, their use as thera%eutic tools are %owerfull+ influence, "+ the histor+ of 5ational -ocialism in that countr+ an, its %ractices of eugenics& Revulsion a"out the histor+ of 5a3i e.%erimentation makes man+ %eo%le reluctant to coo%erate with the trans%lant enter%rise& Moreover, "eliefs ,erive, from the me,ieval %erio, a"out the ,iffusion of the essence of life throughout the entire human "o,+, inclu,ing a conce%t of “ cellular memor+, ” are influential in resisting the transformation of "o,+ %arts into technological artifacts& Rather than conce%tuali3ing organs as essentiall+ machine ( like interchangea"le %arts, in Lerman+ a ,ominant i,eolog+ is one in which the %articularit+ of in,ivi,ual organs is stresse,& 8t is im%ortant to %reserve %rocure, organs in as fresh an, unchange, manner as is %ossi"le in or,er to retain their uni2ue, essential 2ualities& The i,eas of “ soli,arit+ ” a %owerful meta%hor from the former 1ast Lerman+$ an, >hristian “ charit+ ” are "oth ma,e use of %u"licl+ to encourage organ ,onation, "ut Hogle argues that in multi ( cultural Lerman+, largel+ for historical an, cultural reasons, making organ ,onation into a social goo, in which ever+one can %artici%ate is fraught with ,ifficulties& 19

he Social &ife of 'uman Organs 8n or,er for "o,+ %arts to "e ma,e aliena"le the+ must first "e visuali3e, as thing (like, an, ,etacha"le from the "o,+, ,ea, or alive& The m+stical essence ever+where associate, with "o,+ flui,s, organs, an, tissues must "e ,issi%ate,, an, these entities can then "e reconce%tuali3e, as o"0ects availa"le for commo,iti3ation& This %rocess of reification an, fragmentation, so characteristic of "iome,ical %ractice, has "een critici3e, re%eate,l+ as a ,ehumani3ing move& The assum%tion "ehin, much of this criticism has "een that %atients an, their families %artici%ate in this %rocess of reification unwillingl+, "ut a careful rea,ing of the literature on me,icali3ation has reveale, that in,ivi,uals are sometimes ha%%+ to relin2uish the ,ense social, cultural, an, m+stical associations inevita"l+ associate, with "o,+ %arts, "ecause these are morali3e, ,iscourses that "ring an accom%an+ing "ur,en of res%onsi"ilit+ an, more often than not, of "lame for sickness an, ,+sfunction& Mi.e, meta%hors associate, with human organs encourage confusion a"out their worth& The language of me,icine insists that human "o,+ %arts are material entities, ,evoi, entirel+ of i,entit+, whether locate, in ,onors or reci%ients& However, in or,er to %romote ,onation in man+ %arts of the worl,, organs %rocure, from "rain / ,ea, "o,ies are often activel+ animate, with a life force "+ me,ical %rofessionals, an, ,onor families are not ,iscourage, from the "elief that their relatives “ live on ” in the "o,ies of reci%ients, or even that the+ will "e “ re"orn& ” *rgan ,onation is commonl+ un,erstoo, as creating meaning out of senseless, acci,ental, ,eaths / a technological %ath to transcen,ence, although in non ( >hristian settings such meta%hors have consi,era"l+ less leverage& Research has also shown that ,ue to the enforce, anon+mit+ that surroun,s ,onate, organs, large num"ers of reci%ients e.%erience a frustrate, sense of o"ligation a"out the nee, to re%a+ the famil+ of the ,onor for the e.traor,inar+ act of "enevolence that has "rought them "ack from the "rink of ,eath& The “ t+rann+ of the gift ” is well ,ocumente, in the trans%lant worl,, "ut it is not merel+ a ,esire to tr+ to settle accounts that is at work when %eo%le want to know more a"out the ,onor& 8t is a"un,antl+ clear that ,onate, organs ver+ often re%resent much more than mere "iological "o,+ %arts? the life with which the+ are animate, is e.%erience, "+ reci%ients as %ersonifie, with an agenc+ that manifests itself in some sur%rising wa+s, an, %rofoun,l+ infl uences the reci%ient C s sense of self& 6 few +ears ago a Montreal heart surgeon was res%on,ing to stories that ha, "een circulating for some time in several ;&-& states a"out whether %risoners on ,eath row shoul, have the o%tion of ,onating organs for trans%lant "efore the+ are %ut to ,eath& This surgeon was uncomforta"le a"out organ ,onation from these ,eath row %risoners, "ecause he was concerne, not a"out the highl+ 2uestiona"le ethics, "ut a"out receiving a heart that ha, "een taken out of the "o,+ of a mur,erer& He sai,, with some em"arrassment, “ 8 woul,n C t like to have a mur,erer C s heart %ut into m+ "o,+, ” then he a,,e, hastil+, tr+ing to make a 0oke out of the situation, “ 8 might fin, m+self starting to change& ” 6 goo, 1)

num"er of organ reci%ients worr+ a"out the gen,er, ethnicit+, skin color, %ersonalit+, an, the social status of their ,onors, an, man+ "elieve that their mo,e of "eing ( in ( the ( worl, is ra,icall+ change, after a trans%lant, thanks to the %ower an, vitalit+ ,iffusing from the organ the+ have receive,& That certain of their surgeons also think this wa+ suggests that fetishism is ,ou"l+ at work, even in the materiall+ oriente, worl, of "iome,icine / the fetishism of o"0ectivit+ %ostulate, "+ Mar., an, the m+stical fetishism ,escri"e, "+ Marcel Mauss& 4o,+ %arts remain infuse, with life an, even %ersonalit+, an, cannot "e stri%%e, casuall+ of their human attri"utes& >ontra,ictions are rife& *nce an organ is %rocure, an, trans%lante,, the reci%ient is severel+ re%riman,e, / even thought of as e.hi"iting %atholog+ / if she attri"utes animistic 2ualities to this “ life ( saving ” organ& Human organs im"ue, with living 2ualities, as the anthro%ologist 5icholas Thomas argues with res%ect to commo,ifie, o"0ects in general, are “%romiscuous”? the+ are at once things ( in ( themselves, an, ,iffuse, with a life force an, e.hi"it an agenc+ that is manifestl+ social& The anthro%ologist Lesle+ -har% argues that receiving an organ is a %ersonall+ transformative e.%erience that ma+ affect how reci%ients assess their own social worth& -he suggests that this transformation takes %lace at two levels / first, su"0ectivel+, so that a reci%ient C s sense of self ma+ "e e.ten,e, to inclu,e 2ualities attri"ute, to the ,onor, an, secon,, through interactions with famil+, communities, an, the me,ical %rofession& -har% notes, as ,oes Hogle, how the language use, in connection with organ %rocurement ,e%ersonali3es "o,ies an, "o,+ %arts, "ut that man+ reci%ients re%ersonali3e organs through the creation of narratives a"out their re"irth& The organ takes on a "iogra%h+ of its own, in,e%en,ent of the %erson in whom it resi,es& The result is that, ,es%ite the force e.erte, "+ the me,ical %rofession to work against the animation of organs "+ %atients, an, the flat re0ection "+ them of the %ossi"ilit+ of i,entit+ transformation, it is evi,ent that man+ %atients, at least in >ana,a an, the ;nite, -tates, "elieve themselves to "e “ re"orn ” after a trans%lant& This res%onse on the %art of reci%ients ma+ in %art "e ,ue to the availa"ilit+ of the same culturall+ tincture, language of transcen,ence resorte, to "+ trans%lant coor,inators when the+ animate organs in or,er to encourage ,onation& 8nterviews carrie, out with organ reci%ients living in Montreal reveal that 0ust un,er half are ver+ matter ( of ( fact a"out the organs the+ have receive,& These in,ivi,uals insist that after an interim %erio, of a few months the+ cease, to "e concerne, a"out the source of the new organ encase, in their "o,ies, an, resume, their lives as "est the+ coul, unchange, in an+ %rofoun, wa+ save for a massive ,ail+ me,ication regime& The res%onses of the remaining reci%ients were ,ifferent= although the+ knew ver+ little a"out their ,onors, the+ %ro,uce, emotionall+ charge, accounts a"out them? a"out the %articular organ the+ ha, receive,, an, often a"out their transforme, i,entities& -tefan Rivet falls into the first grou%& He is a '1 ( +ear ( ol, ki,ne+ reci%ient, ,oing well when interviewe, fi ve +ears after the trans%lant& He sa+s= 1<

(8 hear, a"out the ,onor, even though 8 wasn C t su%%ose, to& 8t was a woman "etween 20 an, 2G& -he was in a car acci,ent M 8 wrote a letter to them, it must have "een a terri"le time for them, an, 8 wante, to thank them& (!i, +ou fin, it har, to write that letterJ (5o, no, it wasnC t har, for me& Like sa+ing “ thank +ou ” to someone if the+ ,o something for +ou, that C s 0ust the wa+ it was& (!i, +ou feel at all strange "ecause it was a woman C s ki,ne+J (5o& 6t first +ou won,er how coul, a female ki,ne+ work in a man M 4ut once the ,octor tells +ou that it works e.actl+ the same in men an, women +ou ,on C t 2uestion things an+ more& 8 have m+ ki,ne+, an, 8 can live, that C s all +ou reall+ worr+ a"out& 8n contrast, man+ other reci%ients un,ergo a rather ,ramatic transformative e.%erience&*ne such was Iatherine 7hite who fi rst receive, a ki,ne+ trans%lant an, then, ten +ears later, after the ki,ne+ faile, an, her own liver was also in 0eo%ar,+, receive, a ,ou"le trans%lant of liver an, ki,ne+& -i. months after the secon, surger+ she ha, this to sa+= (8 have no i,ea who the ,onor was, all 8 know is that "oth the ki,ne+ an, liver came from one %erson "ecause +ou can C t survive if the+ %ut organs from two ,ifferent %eo%le into +ou at once / +our "o,+ woul, never "e a"le to ,eal with it& 8 wrote a thank +ou note right awa+ that 8 gave to the nurse& 4ut the+ ,on C t like +ou to know who it is, sometimes %eo%le feel that their chil, has "een re"orn in +ou an, the+ want to make close contact& That coul, lea, to %ro"lems& 8 still think of it as a ,ifferent %erson insi,e me M 8t C s not all of me, an, it C s not an, it C s not all this %erson either& 6ctuall+, 8 might like some contact with the ,onor famil+ M Kou know, 8 never like, cheese an, stuff like that M "ut all of a su,,en 8 coul,n C t sto% eating Iraft slices / that was after the fi rst ki,ne+& This time aroun,, the first thing 8 ,i, was to eat chocolate& 8t C s ,riving me cra3+ "ecause 8 C m not a chocolate fanatic& -o ma+"e this %erson who gave me the liver was a chocaholicJN M -ome of the ,octors sa+ it C s the ,rugs that ,o things to +ou& M sometimes 8 feel as if 8 C m %regnant, as if 8 C m giving "irth to some"o,+& 8 ,on C t know what it is reall+, "ut there C s another life insi,e of me, an, 8 C m actuall+ storing this life, an, it makes me feel fantastic& 8t C s weir,, 8 constantl+ think of that other %erson, the ,onor M "ut 8 know a lot of %eo%le who receive organs ,on C t think a"out the ,onors at all& 6 while ago 8 saw a TA %rogram a"out Russia an, it seeme, as though the+ were actuall+ killing chil,ren in or%hanages to take out their e+es an, other organs& This ,istur"e, me no en,& 8 ho%e to Lo, it C s not reall+ like that& M+ %arents an, m+ uncles all thought 8 shoul,n C t have a trans%lant, the+ sai, +ou can C t "e sure that the %atient is reall+ ,ea,& 4rain ,ea, is not ,ea,, the+ sai,& 4ut 8 know that C s not right& 8n a wa+ 8 wish 8 coul, have a %ig C s liver or ki,ne+ / it woul, "e much sim%ler then& Iatherine is unlikel+ to have informe, her ,octor in an+ ,etail a"out her transforme, self? she knows full well that he woul, chi,e her for har"oring such i,eas& The %u"lic an, %rivate faces of trans%lantation are hel, a%art, an, the inherent contra,ictions %resent in "oth %rofessional an, %u"lic 20

language are smoothe, out of e.istence& 7hen ,onors are living an, relate, to the reci%ient, accounts given "+ reci%ients a"out their e.%eriences are less ,ramatic "ut no less moving than those given "+ in,ivi,uals whose trans%lante, organs come from "rain ( ,ea, "o,ies,& The ma0orit+ of reci%ients in Fa%an o"tain organs from close kin, an, thus, rather than "eing concerne, a"out fun,amental changes to i,entit+ an, em"o,iment / as is a%%arentl+ often the case in 5orth 6merica / reci%ients focus a"ove all on the intense, enmeshe, ever+,a+ relationshi% that ,evelo%s "etween the relative who ,onate, the organ, usuall+ their mother, an, themselves& These reci%ients ,well a"ove all on feelings of gratitu,e for the “ treasure ” that can never "e re%ai, an, worr+ a"out the harm that the+ ma+ have cause, to their relative whose health+ "o,+ was cut a%art on their "ehalf& 7hen an organ is re0ecte,, as inevita"l+ ha%%ens at times, feelings of guilt an, shame are overwhelming, an, the %ossi"ilit+ for a secon, trans%lant from another relative, if in,ee, it is a %ossi"ilit+, cannot "e contem%late,& 8n the course of man+ +ears of researching the ;&-& trans%lant enter%rise, -har% o"serve, how social relationshi%s "etween "rain ( ,ea, ,onors an, reci%ients have "een transforme, from one "ase, entirel+ on imagination, ,ue to enforce, anon+mit+, to something that can "e cele"rate, in the %u"lic s%here& :or e.am%le, ,onor families to,a+ can atten, the Trans%lant *l+m%ics in which organ reci%ients %artici%ate& 8t is common to "uil, e,ifices as ,onor memorials an, to hol, %u"lic gatherings in which ,onors an, reci%ients come together as grou%s to cele"rate the %ast lives of ,onors& The leitmotiv of such gatherings is one of loss an, re,em%tion, an, s%eakers are organ reci%ients who 2uite often know ver+ well who was their ,onor& These gatherings are reminiscent of meetings of 12 ( ste% %rograms such as 6lcoholics 6non+mous in which in,ivi,uals give testimon+ a"out their s%iritual ,eath an, re"irth in the case of trans%lants, ,onors an, reci%ients in effect simultaneousl+ ,ie an, are re"orn$& The result is a %rofoun, transformation, often involving significant reforms in the ,ail+ lives of reci%ients& Meta%hors ,erive, from >hristianit+ are ,rawn on li"erall+, an, testimonies are ,elivere, in a manner similar to those use, in Eentecostal churches, even though organ reci%ients are not necessaril+ "elievers& -har% %oints out that "oth ,onor kin an, organ reci%ients 2uickl+ learn how to narrate their stories a%%ro%riatel+ in %u"lic& The contents are self ( sanctione, so that the untimel+, often "rutal ,eath of the ,onor is never mentione,& 6lso %asse, over in silence are the roller ( coaster ri,es of %otential organ re0ection that numerous reci%ients e.%erience, the si,e effects of the regime of en,less me,ication, an, the economic har,shi%s that man+ must en,ure ,ue to the e.or"itant cost of me,ication& 7ith %rofessional urging, the telling of such ,istur"ing, sometime gruesome “ ,etails ” is reserve, for %rivate s%aces, "ecause the+ are likel+ to have a negative effect on the trans%lant worl, as a whole& -har% ,iscusses how "on,s create, "etween ,onor families an, reci%ients / in the cases where the+ ,o eventuall+ meet / ensure that organs continue to "e anthro%omor%hi3e, an, animate,& -he notes that, in her e.%erience, such "on,s onl+ ver+ rarel+ go "a,l+ wrong& 21

When (esources Are Short 8n Me.ico organ ,onations from "rain ( ,ea, ,onors are relativel+ rare, an, so trans%lant %rograms, as in Fa%an, ,e%en, on living ,onors, the ma0orit+ of whom are close relatives of the reci%ients& Reasons for low rates of ca,averic organ ,onation are com%le., an, inclu,e religious "eliefs inclu,ing la+ >atholic inter%retations of resurrection that re2uires an “ intact ” "o,+& 6 "elief in miracles as an ever ( %resent %ossi"ilit+ also makes some Me.icans / among them "oth %atient families an, me,ical staff / reluctant to acce%t a ,iagnosis of "rain ,eath as trul+ signif+ing the en, of all ho%e for recover+& However, research reveals that most at issue is not re0ection of the "rain ,eath conce%t %er se, "ut rather ,imensions of the %olitical econom+ of health care& This makes the ,iagnosis an, su%%ort of "rain ( ,ea, %atients ,ifficult in %ractice an, it is har, for families to %lace their trust in the %roce,ures& -u"stantial infrastructural limitations e.ist that make i,entif+ing an, maintaining "rain ( ,ea, %atients in Me.ico challenging, inclu,ing the scarcit+ of tertiar+ level hos%itals, ventilators, an, me,ical staff with e.%ertise in ,iagnosing an, managing "rain ,eath& :urther com%licating matters is ,ee% ( roote, ske%ticism / "re, "+ the long histor+ of corru%t single ( %art+ rule in Me.ico / with which man+ Me.icans view "oth me,ical %rofessionals an, the largel+ state ( run$ health care institutions where the+ work& 8n such an environment, fears a"out the ina%%ro%riate ,iagnosis of "rain ,eath an,Hor the %otential for %rofiteering from ,onate, organs are not uncommon, an, form su"stantial "arriers to the routine a,o%tion an, im%lementation of the "rain ,eath conce%t& :urthermore, a sentiment common among Me.icans, inclu,ing their %olitical lea,ers, is that %rocurement of organs from "rain ( ,ea, "o,ies is not humane, an, is an activit+ in which onl+ a countr+ such as the ;nite, -tates woul, activel+ %artici%ate a feeling share, "+ man+ Fa%anese$& These fin,ings from Me.ico highlight the wa+ in which %olitical an, economic factors can cri%%le national trans%lant %rograms? without concerte, investment in the coor,ination of such %rograms that inclu,e consi,era"le economic an, e,ucational in%ut, such %rograms are unlikel+ to "e a success, %articularl+ when o"vious cultural constraints are also %resent& *n the "asis of e.tensive ethnogra%hic research, the anthro%ologist Megan >rowle+ ( Matoka argues that the famil+ in Me.ico, the core of social an, moral life, is regar,e, as "oth a “ national ” an, a “ natural ” resource for organs& *rgans e.change, as trans%lants “ are often e.%erience, neither as o"0ectifie, %arts, nor as wholl+ other, the+ contain the self of the ,onor, +et are also alwa+s alrea,+ connecte, to the self of the reci%ient through familial relate,ness& ” 6"ove all, it is mothers who are e.%ecte, to ,onate / their sacrifice is %art of their %rime role as nurturer of the househol,, an, ultimatel+ their "o,ies are thought of as more e.%en,a"le than those of working men& !onation %atterns “ fit ” with the "rutal realit+ of an im%overishe, life an, the acce%te, ,ivision of la"or in Me.ican househol,s& -haring among families of "oth "iological an, social su"stance is e.%licit& 6t times, analogies are ma,e "etween giving "irth an, organ ,onation? 22

nota"l+, a s+m"olic association is ma,e "etween the %enetration that must take %lace to %rocure a ,onor organ, se.ualit+, associate, loss of %urit+ in women, an, a resultant "irth& 5ot sur%risingl+, then, mothers are thought of as the "est ,onor can,i,ates& 7ith the e.ce%tion of +oung unmarrie, men, ,onation "+ males is associate, with negative se.ual connotations& 8n actual %ractice, these cultural constraints are "+ no means alwa+s o"serve, "ut, even so, >rowle+ ( Matoka argues, the ,ominant ,iscourse is evi,ence of a “ hegemon+ of ,ee%l+ em"e,,e, OnationalP values, ” where a religiousl+ infuse, i,ea of the suffering, nurturing woman remains ,ominant& >rowle+ ( Matoka has carrie, out one of the ver+ few stu,ies an+where in which organ reci%ients have "een interviewe, some time after receiving a trans%lant& Re%eate,l+ the %eo%le to whom she talke, ma,e statements along the following lines=“ 8 thought ever+thing woul, change, once 8 got m+ ki,ne+& 6n, it has / "ut not alwa+s like 8 thought it woul, M 8 thought 8 woul, "e health+ again, an, normal, "ut reall+ 8 C m 0ust a ,ifferent kin, of %atient now& ” >rowle+ ( Matoka fin,s that, rather than achieving the %romise of health an, a new life hel, out "+ the me,ical worl,, reci%ients live in a “ %ersistent liminalit+& ” Man+ Me.ican ki,ne+ %atients s%ent +ears tr+ing to get their con,ition recogni3e, as real, in %art "ecause s+m%toms of renal failure can "e har, to ,iagnose outsi,e of s%ecialt+ clinics& -ome %atients are eventuall+ referre, for ,ial+sis, "ut the mortalit+ rate while on ,ial+sis is unacce%ta"l+ high, an, relate, at least in %art to malnutrition, the %resence of other illnesses, length of time "efore ,iagnosis, an, other factors& 1normous "arriers e.ist in the health care infrastructure that %ut constraints on trans%lant %rograms, an, relativel+ few %eo%le en, u% on waiting ( lists& Most Me.icans ,o not think of a trans%lant as a realistic %ossi"ilit+ / this technolog+ is high / en, me,icine for movie stars an, the rich& 8n contrast to the 5orth 6merican situation, %otential reci%ients must often "e convince, "+ me,ical %rofessionals that a trans%lant is not onl+ a realistic, "ut a ,esira"le, goal? for man+, their names will not "e %ut ,own on a waiting ( list until a relative or s%ecial "enefactor has come forwar, who is clearl+ willing to act as the ,onor& >rowle+ ( Matoka notes that reticence is such that a “ ,eman, ” for trans%lants ha, to "e create, "+ the staff in the large center in Lua,ala0ara where she worke,, an, this was usuall+ achieve, "+ telling %atients that the+ will "e restore, to a “ normal ” life "+ un,ergoing a trans%lant& However a normal life ,oes not sim%l+ im%l+ regaining in,ivi,ual health in Me.ico, "ut rather a return to “ %ro,uctivit+ an, re%ro,uctivit+ ” ? when %eo%le ,eci,e to un,ergo trans%lants it is "ecause the+ have "een convince, that the+ will "e a"le to work, have chil,ren, an, live to raise them& *n return to ,ail+ life, most organ reci%ients were confronte, with a harsh realit+ / one of "o,il+ si,e effects, some ver+ serious? %ersistent threats of organ re0ection? constant concern a"out an ina"ilit+ to %a+ for the e.%ensive me,ications? an ina"ilit+ to return to work in factories or agricultural settings where the+ woul, "e e.%ose, to ki,ne+ / ,amaging chemicals? an, ,iscrimination "+ em%lo+ers who assume that %eo%le who have ha, trans%lants will "e sick all the time& There are also concerns among men who have ha, trans%lants a"out a loss of se.ual %otenc+ / of 2D

"eing like a gel,ing or a half ( woman? ,ivorces sometimes result "ecause wives "ecome fearful a"out their %artners? man+ are concerne, a"out an ina"ilit+ to "ear chil,ren? an, certain +oung %eo%le who have ha, trans%lants fear or ,evelo% an ina"ilit+ to form lasting relationshi%s& 8t is highl+ unlikel+ that Me.ico is uni2ue with res%ect to these e.%eriences& >rowle+ ( Matoka C s research highlights the ,iscre%anc+ "etween the rhetoric of the trans%lant worl, an, the realit+ of ever+,a+ life for man+ %eo%le& This is not to suggest that organ trans%lants shoul, not "e ,one, "ut the social ramifications an, life / long effects of this remarka"le technolog+, es%eciall+ when it is %ut into %ractice in countries that are short of high ( tech resources, are s+stematicall+ ignore, or else %resente, in "iase, form sim%l+ as num"ers of lives save,& 8n closing this section we turn "riefl+ to the 1g+%tian situation& The research of anthro%ologist -herine Ham,+ gra%hicall+ ,emonstrates the social, %olitical, an, economic ,imensions of the technological assem"lage associate, with organ trans%lants& 6%%ro.imatel+ 900 to )00 ki,ne+ trans%lants making use of living ,onors are %erforme, each +ear in 1g+%t? however it is striking that, although sale of organs is strictl+ illegal, the ma0orit+ of ,onors are not relate, to the reci%ients an, sell their ki,ne+s to unrelate, reci%ients while trans%lant ,octors turn a "lin, e+e& !onors, whose ,es%erate stories occasionall+ a%%ear in the news%a%ers, usuall+ receive somewhere "etween @',000 an, @#,000& 7ealth+ 1g+%tians in nee, of a trans%lant sometimes choose to go a"roa,, taking a famil+ mem"er as a ,onor, for what the+ assume will "e "etter care& Erocurement of organs from %atients ,eclare, "rain ,ea, is illegal in 1g+%t, thus creating a great ,eman, for living ,onors& !uring the course of e.tensive fiel,work Ham,+ interviewe, some of the D0,000 %atients in 1g+%t with en, ( stage ki,ne+ failure who, in or,er to survive, are tethere, for hours several times a week to ,ial+sis machines& Trans%lants are carrie, out in "oth %u"lic an, %rivate hos%itals in 1g+%t, "ut the vast ma0orit+ of %atients on ,ial+sis cannot contem%late a trans%lant "ecause the+ are una"le to fin, the necessar+ resources to %a+ for the me,ical services, the %rohi"itive cost of the ki,ne+ itself, an, the cost after surger+ of life ( long me,ication& :urthermore, the %eo%le interviewe, were unconvince, that a trans%lant woul, in the en, "e of "enefit to them& 6"ove all, when consi,ering receiving an organ from a living relate, ,onor, %atients were concerne, a"out the sacrifice of the ,onor an, their %ro"a"le loss of health& 8n a,,ition, the investment in a trans%lant woul, inevita"l+ effect su"stantiall+ the economic well"eing of the famil+ as a whole, an, in an+ case the ma0orit+ of %otential reci%ients "elieve, that their own %ost ( trans%lant lives woul, in all %ro"a"ilit+ not "e im%rove, enough to 0ustif+ the costs involve,& The reasons that 1g+%tian ,ial+sis %atients come to such conclusions are in large %art "ecause the+ are all too well aware of the gra,ual colla%se of sociali3e, health care in 1g+%t over the %ast ,eca,es, an, man+ have %ersonal e.%erience of wi,el+ %u"lici3e, su"stan,ar, care& The+ are also well aware from television, ra,io, an, wor, of mouth re%orts of corru%tion in the me,ical %rofession& 4ut "e+on, these concerns, 1g+%tians are to,a+ a%%rise, of what is ,escri"e, 2'

as the im%ro%er use of the nation C s natural resources an, of what un,enia"l+ are e.tensive health ( relate, %ro"lems "elieve, "+ the %u"lic an, me,ical %rofessionals to result from e.cess %estici,e usage an, im%ro%er han,ling of to.ic waste& 8n Ham,+ C s wor,s, 1g+%tian ,ial+sis %atients often a%%eal to what the+ regar, as “ local "iolog+ ” that in effect ren,ers organ trans%lantation inefficacious ,ue to a contaminate, environment, en,emic %arasitic infections, %overt+, the intake of %oisonous foo,, an ina%%ro%riate use of %harmaceuticals, an, me,ical mistreatment& There is ,ocumente, evi,ence that the num"ers of in,ivi,uals with ki,ne+ failure an, liver ,isease are on the increase in 1g+%t& 7hen interviewe,, ne%hrologists note, that the ki,ne+ ,iseases the+ see to,a+ are more aggressive than formerl+ an, increasingl+ ,ifficult to treat& -everal of these s%ecialists, like their %atients, insiste, that this situation is the result of environmental ,egra,ation an, the ingestion of to.ins& 6mong other things, formal,eh+,es are use, to %reserve milk, hormone (%um%e, chickens are im%orte, rather than using local “ countr+ ” chickens, an, %estici,es re0ecte, in the 7est as unsafe are ,um%e, on 1g+%t& -ome ,octors %ointe, out that to,a+, as a result of ;&-& “ ai, ” %ackages an, other %olitical arrangements in the Mi,,le 1ast, %eo%le eat "rea, ma,e from im%orte, ;&-& wheat that, after storage in the hot an, humi, con,itions of 1g+%t, %ro,uces a fungus that is linke, to ki,ne+ an, liver to.icit+, an, cancer& There is su"stantial scientific evi,ence to su%%ort these claims, an, there are a,,itional ,ifficulties with %estici,e resi,ues in the local cro%s& 8n classical times 1g+%t was the "rea,"asket for the Roman 1m%ire an,, even though later on there were on occasion "a, harvests, malnutrition, an, corru%t regimes in which the grain was not e2uita"l+ ,istri"ute,, until recentl+ 1g+%t has "een largel+ self ( sufficient in grain %ro,uction& The "uil,ing of the 6swan ,am, com%lete, in 1<91, ruine, man+ hun,re,s of acres of fertile soil, "ut even so, the countr+ continue, to "e a"le to sustain itself& 8n recent +ears the situation has change, com%letel+& -ince the 1<90s, a com"ination of e.tensive ;&-& su"si,ies, %lacing 1g+%t un,er %ressure to im%ort ;&-& grain, together with the transformation of locall+ %ro,uce, coarse grains that formerl+ nourishe, the ma0orit+ of 1g+%tians into animal foo,, has left the vast ma0orit+ of 1g+%t C s %o%ulation in ,ifficult straits& The meat %ro,ucts that result from the use of grain to fee, animals now fee, tourists, resi,ent foreigners, an, wealth+ 1g+%tians, "ut not the ma0orit+ of the %o%ulation& -ince the 1<<0s there has "een a %roliferation of ,ial+sis clinics, an, man+ %atients argue e.%licitl+ that what the+ regar, as a faile, 1g+%tian state is com%licit in the %ro,uction of faile, 1g+%tian "o,ies& >urrentl+ government e.%en,iture on health care amounts to 2 %ercent of the total L!E 10' an, the cost of health care for 1g+%tians is increasing ra%i,l+& Liven the e.%ense an, 0ustifie, concerns a"out to.ins, man+ %atients conclu,e that having a trans%lant will change their lives little, for the new ki,ne+ too, will soon "e ,amage,& 6n, clearl+ un,er these circumstances ,onors too, no matter how well intentione, the+ "e, will "e una"le to survive on one ki,ne+, no matter what the me,ical %rofession 2G

claims& 5o human organs can "e “ s%are ” in this kin, of %ollute, environment, an, the ma0orit+ of nee,+ reci%ients turn their energies towar, cultivating stea,fastness& Altruism) *ntitlement) and %ommodifi cation *rgan ,onation has long "een associate, with altruism, "ut if this is the case, "o,+ %arts cannot "e thought of as mere material things, ,etritus from the ,ea, or s%are %arts from the living ma,e availa"le for rec+cling? social value must inevita"l+ "e attache, to them& 6ltruism is, in effect, charit+ ma,e mo,ern& 6uguste >omte create, the conce%t of altruism at the en, of the 1<th centur+, an, %ose, it in o%%osition to egoism, a con,ition that he feare, woul, ,estro+ the tattere, remnants of social soli,arit+ in ur"ani3e,, mo,erni3ing societ+& !eli"eratel+ stri%%e, of an+ religious connotation, altruism is a thoroughl+ seculari3e, form of charit+ from which no ,irect reci%rocit+ to givers is antici%ate,& 4ut an e.%ectation e.ists that societ+ as a whole will "enefi t from such acts& 1ven though the 1<#) law in the ;nite, -tates regulari3ing organ ,onation was name, the ;niform 6natomical Lift 6ct, it was nevertheless assume, from the outset that gifts of organs woul, "e “ free, ” that is, the+ woul, "e charita"le altruistic ,onations, as is the case in "+ far the ma0orit+ of the countries that %artici%ate in this %articular technolog+, even when sales take %lace clan,estinel+ in a few of them& However, use of the “ gift ” meta%hor has the effect of in,ivi,uali3ing ,onation, of making the act into a %ersonal choice / one that “ fi ts ” with a ,ominant i,eolog+ in 5orth 6merica of having the right to ,is%ose of one C s "o,+ as one woul, wish& :rom the outset some %otential ,onors assume, that the+ woul, "e a"le to “ ,irect ” their ,onations / that is, to name, if not an in,ivi,ual, then at least the ethnic grou% to which the organ shoul, "e ,onate,& 4ut altruism, in contrast to gifts that are han,e, to s%ecific in,ivi,uals, is e.%ecte, to "enefit societ+ at large, an, constitutes a form of fellowshi% that cements %eo%le together in mo,ernit+& >onfusion can multi%l+ "ecause, where "o,ies ,o not “ "elong ” to in,ivi,uals, as is the case in Fa%an, the 2uestion arises as to whether in,ivi,uals have the “ right ” to choose ,onation of their own "o,ies& This is wh+ families have "een legall+ a"le to veto ,onation until recentl+ in Fa%an& 7hereas ,onation from "rain ( ,ea, "o,ies to a well ( regulate, ,onor %ool that enforces anon+mit+ an, %ractices an egalitarian ,istri"ution of organs can no ,ou"t "e thought of as altruistic, the same cannot "e sai, for the %rocurement of organs from living ,onors, whether for %a+ment or for ,irect ,onation to a relative& The Me.ican an, 1g+%tian situations make it a"un,antl+ clear that matters are "+ no means alwa+s as clear ( cut as the+ seem& !onation within families ,oes not %reclu,e a moral econom+ to which monetar+ values contri"ute& 6lthough it is not alwa+s the case, the ,ecision to ,onate a ki,ne+ “ ma+ "e "orn of a "rutal calculus in which one famil+ mem"er is ,riven to %rovi,e a ki,ne+ to another to safeguar, the economic survival of the famil+ as a whole& ” More often than not this means that wives ,onate to hus"an,s, an,

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some ,escri"e the ,ecision e.%licitl+ as "eing ,riven "+ economics& 8n other instances cars, real estate, travel, an, so on ma+ "e tra,e, among famil+ mem"ers for an organ& >ases of non ( relate, ,onations also came to light in Me.ico in which organs were tra,e, for lan, that resulte, in %ositive long ( term fictive kin relationshi%s& Mi.ing of market values with human "o,+ %arts is clearl+ not uncommon where live ,onors are involve,, "ut it ,oes not necessarily involve "latant e.%loitation& >learl+, glo"all+, there is no “ norm ” as far as trans%lantation is concerne,& 4ut, as we have seen, the ver+ success of the technolog+, together with ,emogra%hic changes that have resulte, in the aging of %o%ulations, have "rought a"out a “ shortage” of organs that ,iminishes the worth of altruistic ,onation an, encourages e.tensive commo,ification, some of it highl+ e.%loitative& 7hen a moral econom+ e.ists that su%%orts the saving of life at all costs, as is a%%arentl+ su%%orte, "+ certain me,ical %rofessionals an, involve, families in the wealthier %arts of the worl,, the shortage is e.acer"ate,& 1ven national ,ecisions that re0ect "rain ,eath as the en, of human life inevita"l+ result in me,ical tourism "+ %atients in search of organs& 6t the same time, efforts to outlaw the sale of organs in certain %laces mean that %eo%le with mone+ sim%l+ travel elsewhere to o"tain what the+ so ,es%eratel+ nee,& To think of this enter%rise as an+thing other than glo"all+ networke, is a grave mistake& The 1g+%tian case la+s "are another form of glo"al networking, one that is %ro,uce, "+ efforts at ,evelo%ment un,er a glo"ali3e, neo ( li"eral econom+, with tragic conse2uences for the health of %oor %o%ulations, not onl+ in 1g+%t "ut e2uall+ in man+ other countries& The increasing %overt+ that results from such ,evelo%ment strategies, "ringing a"out, among man+ other things, "asic ,ietar+ changes that in the 1g+%tian case actuall+ have to.ic effects, has far ( reaching conse2uences as a reci%e for wi,es%rea, organ failure& -imilarl+ to the ,iscussion in connection with the use of the ultrasoun, scan for se. selection of a fetus, the im%act of trans%lant technologies on the ever+,a+ lives of %eo%le who are ,irectl+ involve, with this enter%rise is conte.t ,e%en,ent, an, the social ( %olitical ( economic environments in which the+ take %lace ,eman, attention& 1thnogra%hic research in connection with technological %ractices %romotes a reconsi,eration of assum%tions a"out governance an, the "asic social contract& 8n the case of organ trans%lants, an, re%ro,uctive technologies, the following issues nee, attention= the relation "etween self an, other? assume, "oun,aries "etween nature an, culture, an, life an, ,eath? new forms of kinshi%? an, the relationshi% among commo,ities, gifts, an, altruistic ,onations& The ,iscussion %rovoke, "+ use of these technologies acts as a touchstone for e.tensive %olitical ,e"ates a"out nationalism, mo,erni3ation, ,evelo%ment, an, %rogress, the %resent glo"al neo ( li"eral econom+, ine2ualit+, %overt+, graft, an,, a"ove all, whose lives are valua"le, an, whose can "e sacrifice,& 7e cannot now go "ack, an, few woul, want to? "ut to com%lain a"out an organ shortage an, to count the success of the organ trans%lant enter%rise solel+ in terms of the num"er of +ears of survival after a graft is ho%elessl+ ina,e2uate& Meanwhile, in the ;nite, -tates, the average wait time for a ki,ne+ is e.%ecte, to increase to 29

10 +ears "+ 2010& 8n >hina, two out of three trans%lants rel+ on organs remove, from con,emne, %risoners&

2)