ENGL 1130 Summary Paper #1
jafr_1
pages_209-302.pdf
290 CHAPTER 9 Who Owns Your Body?
In addition to Kerry K. Howley's article, others in this chapter also focus upon conhoversies over the donation and sale of human substance across local, state, national,
and international boundaries. In "Donors Have No Rights to Donated Tissue," Kristen E. Schleiter explores the consensus among legal experts that bodily donations no longer belong to the donors. Arthur Caplan argues in "The Trouble with Organ Tra{ficking" that financial incentives for such donations are unethical and will only compete with illegal black markets. "Why We Need a Market for Human Organs" by Sally Satel presents the case for establishing a public marketplace for donation as a legal counter to black-market practices. Str-rdent writer Caroline Rubin points out in her essay "The Gendered Language of Gamete 'Donation"' the surprising implications of sexist rhetoric in attracting donors. Such rhetoric may prove to be an illuminating point of entry when we examine the social, moral, and legal consequences of the new technologies that enhance as well as diminish our contemporary lives.
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Who OwnsYour Body Parts?F en'\3f i Everyone's Making Money in the Market for Body>t-i..n\ ''"' 't
Tissue - Fxcept the Donors -x-t r'i\r'1' ': "r- IkrryHowley
Kerry Howley ls c senror editor ot Defunct mogozine. She worked ot Reason Magazine from 2005 to 2008 ond wos o senior editor ot the magozine from 2007 to 2008."Who OwnsYour Body Ports?" recelved the 2008 LosAnge/es Press Club Aword for "Best Mogozine News//nvestlgotive Afticle."
PREREADING With advances in biomedical technology, the demand for human donor tissue has set a high price on the use of post-mortem human remains. What might be some of the moral, medical, and social consequences of this situation? How might hospitals, insurance agen- cies, or the government set a price on human remains, guarantee their medical quality, and secure their legal acquisition and fair distribution? Jot down some of your responses to these questions.
Alroi. Cooke's body lay cold in the embalming room of an East Harlem funeral I home, suspended in the brief limbo behveen death and cremation. A "cutter" soon arrived to make a collection. He sliced open Cooke's legs, sawed the bones from the hip, and took them arva,v. The quintessentially British presenter of Masterpiece Theatre and Alistair Cooke's Ameica-the face of genteel, urbane Albion to millions of Americans-was being carved up for parts.
Howley, Kerry. "Who Owns Your Body Parts?" Reason 30.10 (Mar. 2007): Z0-)1. Print. Raason magazine and Reason.com. Reprinted with permission.
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Kerry Howley Who Owns Your Body Parts? 291
cooke had died on March 70, 2004, the victim of a cancer that spread from 2
I-C t; bor,". H" left behind a 95-year-old disease-ridden corPse. Susan Kittredge' CJl.,, daughter, was mindful only of the potentially exorbitant funerary exPenses ;fl;pp;a t[ro.,gh th"y;11;; prg", i,, s.ar.h of , good price. She eventually settled m a funeral home with a $595 cremation fee'
Thehome,EastHarlern'sNewYorkMortuaryService'promisedKittredgeal tor of ashes but said "",hi;g
of its bigger plans for her father, who would not make it
blhe cremator whole. Fo, ife., the funeral director gave a NewJersey tissue Proclrre- ment agency access to coot .', ,"*rir-rr. His bones, w"orth some $7,-090, were
prepped
fu resale, and his records were falsified to alter his age and cause of death' Three days
lafter, as promised, Susan received a cardboard box of ashes by mail'
Alistair Cooke,s ,.*,i.,, were only the most famous of more than a thousand bod. 4
fts plunJered by Michael Mastromarino, ownel of Biomedical Tissue Services (BTS)'
, He had a simple b*ri;;, ;;i"i, Pay funeral directors for access to bodies and resell , hones, heart valves, spines, and other [issues to biotech firms in need of spare parts'
A former d",',tal s,,g"on, Mastromarino was familiar with the biotech industry '
-d it ,iring demand for f,ansplantable tissue. While he was a legitimate practitioner,
he had co-authored , ur"f."U",!t the benefits of replacing old with new, buoyantly titled
bnile: How Dental Implants can TransformYour Life.-He stopped,transforming lives
**."gt *rrillofacial ;;g"ty six years ago,.when his predilection for self+nedication led to trouble. He botci-lJ L.,rg.ry, ,,id th. patient charged.that he
was stoned on
Demerol as he did *. U" toU the"trust of his paiien6, and then he lost his license' BTS s-as an attempt at fiscal redemption, and it proved very lucrative
As the scandal unraveled in 2005, p,o,..,,to., revealed that Mashomarino had 6
neited $4.6 million ; iil. years of back-room dissections. He paid undertakers
sr,ooo a pop for providing a.c.,s to the dead, paid cutters $]00 to $500 for extract-
",g ;";'"i -"tilorui. prrts, -ard,
according io- his lawyer' managed to take home -,f,"
SZpOO per body. (O,-," of MastromarinJ's former employees contends the boss
J*-p"1i"g i,-, ao*ur" tr-,rt.i rt" N.* york police Department later interviewed the Sunilies of 1,077 p.opl" whose bodles were raided for spines' bones'
tendons' and
o*rertissues.BTShadcr.rtdealswithfuneralhomesinNewYorkCity,Rochester, Philadelphia, and New )erseY.
Thecompany,,*o,k*,,,m,te.',ishatbest,dangerous.atworst.ForfamiliesT **ro planned ,r-, op.r,-carket funeral, BTS cutters would patch up
gutted corPses as
best they could. Investigrtorc lrt., found legs stuffed witlr plastic piping of the kind
hund at hardware stor.i A. employee said iirat he had r-rsed rolls of socks to the same
;d;, ,,-,d poti.. found surgic'l glo'et sewn uP inside hastily repaired remains'
Cooke's bones were ,oli to flegeneration Technologies' one of the country's 8
largest tissue banks. Th" .o-p''''y lays Cooke's bones were deemed unsuitable for'i*plr.,trtion, but it can't t,y tt''" same jor other pieces of-tissue it bought
from
\Iastromarino. The tlrr".r grs distributed ended up everywhere aom a woman's neck in Kentucky to a man's jaw in Tampa Bay' Hundreds of people
wake up every
*.*l"g knowir,! that they are partly composed of stolen body parts' Irr- F"bruriy 2005, Mastromarino and three others were indicted
on IZZ 9
charges,includingbody'stealingandopeninggraves'Thegrislystoryreceivedper- hrpJ*or" m"dlr"atteriion than"any ,.t.h t.*Jrl since a wave of body snatching
in
292 CHAPTER 9 Who Owns Your BodY?
thel8thcenhln,..AFebruanT006PautaZahnNowsegmentspunthestoryintothe nerfect media narratir.,ffi#;";ilr rittri.,, a celebiity,
and a whistleblower' But
i#i1:iil;;i*r;; ;.,,1failed to point out that much of Mastromarino's basic
business model rvas perfectr.v l.gal, .om*orl, ,r-ri ,-r"."rrary to the biotech industry'
If
Masrromarino r,rd u..r,'i;;5;'i;;;;i; hr";;rcle a fortune off bodv parts while
;;]irg nell s-ithin the limits of the law' consider tr," *rr'r'i'u"-;;;il in which Mastromarino
played but a tiny role' to
Demand for human ,'r;#;;;er been higher, and human remains have never
been more r-aluable. d;;il io th. Amerlca"n Association of Tissue Banks, doctors
peribrm more than t ;li;;;rrue transplants each year, using. everything from sec-
ondhand ligaments," ;;;;;"*" rr""u valves. That fuels a thriving industry com-
rrcsed of tissue banks, ffi;t*;;;' "'.'a 'iaat"men' Each year the industry takes in
anestimated$lbillioninrevenue,notacentofwhichwillgotothefamiliesorheirs oiafr. ao.rom who provide the raw material'
fu the Cooke scandal deepened in -garly 2006' the Association of American
lt
Tissue Banks sent tt' ;";;;; "t of t'ki"g points' almost i]l :l'n"n
empha-
sized the outlie^trtu, J Urstromarino's of"irtio,'t. There are important differ-
ences beh.veen BTS ;;ij.;ri ;rnks, the .rrl*ir,ion emphasized. Most crucially'
Mastromarino never ;'.,gh, ih; "."r*, of donor families before harvesting
the tissue
of their relatives. "";Xil;
*iir. g"".*r di'"tto", lied about the quality of the
tissue, and put transpilirt;Gr+1, in danger. "what these folks are alleged to have
done violates .r"rytr,irig r"";;; i". and eierything we are trying to do," says Robert
*t*"+.?l?;1,\:?';ffit['"umber or academics, doctors, and lesislators
believe tz
the Cooke scandal wain't an-aberration but an inevitability' They believe the
tissue
industry as a whole, #r'^ n ,nives to distance itself from Mastromarino, is abusing
families on a scale ,;iiil#';:.;;;.h or"*,-'y o". bodv broker. "The industry will
argue that these are ;;;rr*, isolated events t(at are irreierant," says Todd Olson' a
professor of ^r,,to*yltJ 'i""tt"'t biology at the Albert Einstein School
of Medicine'
"My view i, it', '""tii;;';;;;;ti'' wf; ;;;; reallv dealing with here is the tip of
*t.;ffi:*;'berieves that the generosity of donors is being abused
on an "epic scale" t3
by tissue nro"*t"*tt";;]i],!il ,,..taaft*"" and bioiech companies that depend
on tissue for their ,rr*iuaT. with scientifi. ,do*"., there has emerged an enormously
beneficial market i";;irr. But the players most fundamental to that market, donors,
arelockedout,prohibitedbylawfromsharinginthebenefitsthatothersderivefrom their bodies. At the heart of this inequity
i, ,'."."r"rion over to what extent we control
our own persons-over whether we own our increasingly valuable component
parts'
Resting in Pieces
Mastromarinofoundseveralbuyersfor-hiscadavericcontraband'amongthemat't highly profitabl. bi;t.;h" ir* r.r"r" as Lifecell. The New |ersey-based
corporation
ranked 16 onFortuiet 1ir, of f"u"rt growing businesses in 2006, and with good reason:
Its stock shot up 28';t;t;il'iy"L' rrtJcomPany owes much of the success to its
flagshiP skin graft, NIoDerm'
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"AlloDerm is a miraculous substance," says Maryrand plastic surgeon Mark rs Richards, "given its universal acceptance into the humrn body.i, Doctors have fou.d that human bodies are far less likely to reject AlloDerm than pl"rio,r, skin substitutes. The graft melts into human flesh because it is derived from hu-an flesh, the strippJ_ down product ofbodies pulled apart after death.
Surgeons use AlloDerm for all manner of life-enhancing procedures, from re- 16 constructive breast srrrgery to hernia repair, as wgll as ,orn. p.rf,rps less urgent opera_ tions. AlloDerm injections are a leading method of lip enhancemert, an iic.easingly popular procedure among women. AnJthe miracle ,.rbrt n". is not without cosmetic benefit for men. "Some surgeons promote its use and employ it regularry for penis enlarge.ment," says Steptren Giunta, a virginia surgeon rp".irtirirrg'in phalloplasty, "ever-r though the manufacturer advises thel not to do so.,,'
AlloDerm is but one of many products that rely on donated bodies for their rz manufacture. Another New fersey company, osteotech, processes donated bone into a putty.surgeons use to patch small breaks. The publicl,v traded firm also sells deminer-, alized bone as "dental dust," a product that accelerates healing ,ft", iooth extractions. DePuy Spine, a subsidiary of Johnson & fohnson, ..r*" ,r*l tissue into specialized bio-implants for spinal surgery. The list oi trt"-givirg ,,eo. t
"h.,ologies is long and
growing. where bodies aren't mined for raw material, they,re foeasured for research. The rs
military buys cadavers to test explosive devices. Medical d"ul". "o*fanies
buv them to test surgical equipment. Surgeons buy them to learn to use the same. . Tissue transplants range from the critical to the seemingly frivolous, but the in- rs
dustry-'s impact is clearly potitiu". The thriving market in tissuJhas enhanced the lives of.millions of recipients, and it is a font of ne"w products that will l-frou. the lives of millions more. Tissue transplants can give sighito the blind ,.,d -obihtv to the bed_ridden. Before such operations were ro"utine,"limbs with cancero,r, uo,-r.J *l;il;; to be amputated; now they can be replaced.
Law and custom both prohibit the sale of cadaveric tissue, a ban heartily sup- 20 ported by bioethicists like Arthur Caplan, the influential director of the University of Pennsylvania's Center for Bioethics- The prohibitionists warn of the degradation and commodification of human beings, but scientific progress has brurred the rine behveen tissue and commodity. Doctors need a constant sheam of remains to perform_and profit from-their work. The current compromise treats the body as prop..ty once it,s in the hands of a corporation but as a "priceless" gift as it passes h;-'; doro.,, family into the marketplace.
"we have a schizophrenic-system," explains Lori Andrews, a professor of law at zr Chicago-Kent College of Law who specializes in the legal implicaiiins of biotech.,ol- ogies..Tissues, she says, "are being tieated as property f,y the'researchers and doctors secretly, and patients don't even rialize that ttrey hru" .ntr,.trry urf"..; ,,^\ Slt::"t
law,proscribes the compensation of donors, ostensibly for their protec_ zz tton' 5ut tt also allows virtually anyone else to buy and sell tissue. publiclv traded companies.ars, pumpifg out treatments that use the remnants of the dead t" ;r;;ih; bodres of the living; the preservation of life requires the commodification of death."Bodies are in this stream of commerce, and that,s not ultim;tr-ira ahi.,g," .ry, Michele Goodwin, director of the Health Law Institute at Depaul Universitv and
293
x,1 CHAPTER 9 Who Owns Your BodY?
author of the 2006 book Black Markets: The subblv and Demand of Body Parts' "But
it's set up in such a way where only companitl" biokt"' and middlepersons receive
compensation, and r"Jrrv ,,,"*it;,, ;;;;i' It's an underhanded way of dealing with
the public."
The lnvisible Hand
The legal value of a human body, d-ead or alive,is zero dollars. "Under old English com- 23
mon law the body had ;;;1t't'at all," "*pl'its Ronn Wade' head anatomist for the state
of Maryland. "Today if you look at not iust transplantable tissue but the demand for body
parts for medical ,"r""riil-J trri.i,tg *d what the market will pay, the body certainly
is valuable." The actual value of the"body varies widely 4 lt"-"Itndistrict
attorney
prosecuting th. l't^rt o*,']to t"'" "y' '-'i"gl" corPse can fetch $250'000' though most
estimates are closer to rro"r" $100,00'0. or'r. .orpr. .an help heal 50 different people-in
the same nr,rmber "f
."*;;;;; i;;J"" might be sent to Auitralia, a heart valve to India'
Bones, skin, spines-all of it is worth something to someone'
The market i, tfrriri"g r"d global .l.*"id has soared, but almost no one will cop z+
to buying and selling fr"ay i"t'' fn" tq.A+fV'tional Organ Transplantation Act outlaws
the transfer of "any hr;;"'*gr" for valuable consideration" for use in hansplantation'
a proscription g",,,"rrlf i"t erito include tissues as well as organs. But the law does a1-
low for.,reasonable d;;;;ociated with the removal, transportation, implantation'
processing, pr.r.*rtior'r, q.t"ii[' t"1u91, and storage of a human organ'" Thus the tissue
industry rlns on *hrt ii a-."*i t" be "reasonabl.it.r-r. Those who strip skin for sales
are "procurers," not venclors; their customers are "proc-essors"' not buyers' Tissues are
not sold for prices based on demand but processed for a "reasonable price'"
Thefirstruleofthetissuemarket,inotherwords,isdon'ttalkaboutthetissuezs market. patients *orti-U" fr, *orr" off if the trade in tissue
were stanched' goes this
ii"" "r
thinking. The supply of life-enhancing materials_would become as scarce as
orsans are now, .r.ril;:t;t'g"' '"d il:kt5llP P'.':'1' u"i-t: :i:lt
that the market
erists. that profits are i"i;;;]f,", is to risk vio"lating the law and the social norms from
s'hich it sPrings. Some donors har.e found ways to play along and
make a tuck, engaging the zo
Ianguage of donation e'en as the,v exact pa,t'mentlOva donors' for instance' can be
..compensated-fortheirtimeat'i.t.,,ll'anvpricethe.marketwillbear.Bloodbanks
pay for plasma' rp...., b"'kt for semen' Brjcontrast' the,kin,of.deceased donors are
never compensated, ;il ,h.. probabl' doit "u.r, know that their relatives' tissue will
be sold. organs,unliketissues,arenotgeneralh'soldforprofit,andthectrrrentdonationzz
regime suffers from ,.".... ""J a*a( r1.rt g"r. In 19ti6 the Uniform Anatomical Gift
Act imposed a highlf regulated-srstem for rianaging organ donation. Kidneys, hearts,
and lungs are trrcked, #aiting liits_maintained."But supply is scarce, largely because
the circumstances in *r,i"r, Jrgan donation occurs are.so limited. organ donors must
be young and healthyl;tt;il, th; aig "1' catastrophic event such as a motorcycle
crash. The gou.rn-.'n'i'" 'l'o designated a single designated procurement otganiza'
tion for every locality. ii t"; die at frome and d"onate, ih. gor..t,rent knows exactly
what organization gets to take your organs'
Tis ernment t compete I
never ent relative ft frorn don first time,
Inl the nonp Washingl death, an next ofki
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director o that is no to corpor mission il posted Sl and reiml
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LifeCell" as Osteot at $888 r victim or
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most ert profit tis called e: chronicl, Transpla monishe that fami A spokes skin and donors a
Or like Mas Anatomi more strt tissue pn
ers with
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Kerry Howley Who Owns your Body parts?
Tissue donation, by_contrast, is lightry regulated and totally unmapped. The gov_ zsernment never desig,ated organizatiorx for .r.h ,r.r, ""Jr-rirrj",y of organizationscompete for available bodies. Almost anyone of any ,g; ;ril;;;;i. do.,o., and tissuenever enters the tightly controred, h.auity."g.,tri"J';rt".-;;r* dishibution. Thisrelative freedom nas h|s1 advantages for'bu,, victirns and other patients who benefitfrom donor tissue, but it"has upset"establlshed procurement organizations that, for thefirst time, have to compete for parts.
In the washington, D.C)., area, the rocal organ procurement organization- zothe nonprofit with a monopoly on organs-arro p.J"urJ, ,ir*".-ii"rpitals notis, thewashington Regiorrar Transpiant co"nrortir- (WRTC) ,rh"n --"one is nearingdeath,.and the nonprofit re.,ds o.rt tr-ity "ounserors
to discuss donation with thenext of kin' If consent is granted, WRTC sends atisst e.*;;;;;m to the hospital.Where does the recovered tissue end up?..According to Cindy Speas, WRTC,s ;odirector of community ltir.r, ,l.9.gr.,irrtio,, i,
.,,,ot iruolrT"j i,
";*ry with any,thingthat is not a not-for-piofit.'Ancl itk t?ue ,h;i.h" "";;;;;;;i.'r."a tissue directlyto corporations' Instead, WRTC provides tiss,e to LifeNet, ,.roth", nonprofit, whosemission is to "improve the qualiyof human life" and "r.;; rh;;;;rnunity.,,LifeNet
frTj,ff.k*Hti,, ,evenues in2004fo.;.tirru./orgr,, pro.rr"_.nt, processirg fees,
From LifeNet, the tissue,e"t:i: t!" forprofit system. LifeNet has contracted with rrLifecell, the company that makes-Alrooe.-,'rro,,g *rtr, "trr;;rilj;;e parrners,,suchas osteotech, the firm that rnakes bone p,,ioy. so,ri"rd ,.,d poort lro lir"c.rrs valueat $8BB million' From there, tissue can eni ,p ,, repracement skin tor a young burnvictim or cosmetic filler for a thinJipped socialite.
LifeNet is not arone ir,.r.-irg as the nonprofit face of a massive for-profit rzi,dustry. The Muscuroskeretar r.r"r"pt-r"iro.,.,drtio, i, tn. *o.ia,s largest tissuebank' osteorech founded ,h:.lr"t .iGpi it with tissue in 1987. osteotech andthe bank are now seoarate entities, both puiling in a rot of cash. The MusculoskeletarTransplant Foundation reported -or" tf,'r., $i42 million in revenue in2004.six years ago, two lournalists at The' orange county Register undertook the ,most extensive investigation to date of the legal i,rru. trr'a.. fh;; linked 5g non_profit tissue procurement agencies ,itr, p"uifiy;ij.iffrr'o';;'o.rrr. They alsocalled each agencv for comment, and ihe recorded "r-rr*.'rr-r."-, ;r*-aropping,chronicle of J".eitio', ,rd ,r.ogr,,".. +;. director of the nonprofit cariforniaTransplant Donor Network, whici at tr," ii*. was selling bone to osteotech, ad_monished the Register, "It is not legal to r.ll o.gr^ and iissue.,,others explainedthat families could not comprehendit,. arrtir"tion between nonprofit and for_profit.A spokesperson for the.univlrsity of Mrr*l-o.gan procurementAgency, which seils
.,i;lj,|;:"o:"0:lo'"if"""h "o-p,,,f c'y"iirl, ..ph;;.l, 'w; "",,,, u. educating organizations like wRTC are among the most virurent critics of shady operators r+like Mastrornarino' They want higher t rrri"r, L .,-,try for brokerr, , ,a.org., uniformAnatomical Gift Act, , more_he"ruiry fr.,J.d Food ancl Drug Adrninistration withmore stringent requirements. Ideaily for them, the governm.;? *;;il designate onetissue procurement agency per area, as it has done wlth organs, ,rJL". the big play-ers with rnonopolies. "The FDA has very r,.i"g.ra requirements for tissue banking,,,
295
D6 CHAPTER 9 Who Owns Your BodY?
savs wRTC',s Speas, "but they have not yet gotten the strictest requirements for tissue
;:;;;g;".iLr. whi.h i, *hy ""''" teeing th"se mavericks out there'"
Above all, such organizatitns emphasize the fact that they are nonprofit, bla.zon- ts
ing their tax status ,, ii.o,,trou.rtible evidence of ethical purity. within the tissue
business, these distinctio., ,."- to hold little import. one industry expert, who wishes
i" ,.r"ri" anonymous b."r,rr. he is still heavily involved in tissue procurement, points
;;i-,h" .-ploy.", "f ih;;;"profit tissue banks ge,,erally make more money than
those working ,t for-proiiba'''k"' No''p'ofits 'l-pl! turn ea.rnings into salaries' "The
.o*prrl., ,rZ "11
.,n ""ty
ti*l"fy," Rai Denhoy' a m9-dical device,analyst with Piper
i;UJt t "".,
told the Associated iress in November. "It isn't as if the people in these
co*pani", aren't making a good living'"
Selling the Gift of Life
Alistair Cooke never agreed to donate his body, but most tissues in the system Come 36
from people *ho *".rtzd their remains to be reused. Hospitals, hospices, and nursing
homes have agreements with tissue procurement organizations, inviting them to con-
tact the next oikin as a potential donor nears death'
About 30,000 AJericans donated tissue in 2005, and the number rises every 37
y""r. Arr".aotal evidence suggests that most of their families have no idea their tis-
l*. *iff be bought ,ni ,otdli'there is a disincentive in alerting the families as to
,rt ",
*igl't, hrp["rr," ,ryt Cood*ln, the DePaul University law professor' "because
the families might-l think would-oppose their family members' ending up in the
stream of commerce." A 2001 report from the Department of Health and Human
Services found that ls ..tissue banking ,,,d p*.,,i,'g practices have gradually diverged from donor families, .;-;;"il;r."'tirr.,. b;;k; dr'" argued thatgiieving iamilies are too fragile for
hard-
1,o,.d t,lk about the marketplace,"and no federal law requires tissue procureme.nt
"rgr"i^ii"", to tell donors that their loved ones may end up in a phalloplasty'
The
United Anatomical Gift Act includes stringent informed consent standards for organs
but is silent on the matter of tissue'
Andrews, th. bi;i;;h "xpert
at chicago-Kent college of Law, says_a nonprofit ;s
hr, ^rk.d
h", io, Iegal advice on the extent to which it musi inform donor families that
tissue will be sold for profit. "The nonprofit tissue bank said' 'we don't want to men-
iio., lprontrl because i,.lr. rfrrid p.opi. won't donate,"' she recalls. "But a key provi-
sion of informed consent is that you've got to tell people what's material to them' And
if the tissue retrieval services think this-is material, ihrt peopl. -would do something
different if they knew, ih":o ol rou"onthey h_ave to tell them. But oftentimes they don't'"
Donor t...rrlt-"r,i "gt.'tit' "'" f'mott'ly aggressive' a phenomenon long +o
observed in organ p.ocrr..ri.rrt. As with orgrr'r'dor'rrtion, ?rg,a,niTtions can spend
ary, ."r_l"g , r.*ir'v l"i" .o"r."ti"g,.-.This" process is probably best described by
the University of A#ona sociologistki..- il.rly, who writes that we can think
;i;;;;J,.,t proforionals as h"aving industrialized altruism by turning it into a
,.resource-extraction problem." The ma'rketing tactics are as rich, as anything.)essica.
Mitford cataloged i"'fr"r Uiti"g expos6 of the?uneral industry, The AtnericanWay ol
Death,four decades ago.
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Kerry Howley Who Owns your Body parts?
Tissue banks must recruit donors and avoid scaring away valuable, life-enhanc- +r ing.future parts; they need to give donors an account of what it means to donate. Widely reported stories like the Alistair Cooke debacle threaten to lower the pool of donors, so agencies have responded with media outreach. Like never before, trgarri- zations need to reassert control over the cultural narrative of donation. In laige
"part,
that has meant taking control of the language, turning the lexicon of scandal into the preferred patois of altr,:T
.-I_g adore if ;f you'd look"at the language we like to use,,,
pleads Speas of the wRTC. "we don't rike io use the word honZ$.,7 . . Jht language WRTC would like iournalists to use is compiled in a "reporter,s 42
guide" available on the organization's website, a compact -r.,rrl of right ,.,d ,ro,g words for iournalists. T.h: offen-diirgharvesthas a rine through it; the consortium sug- gests recottery. Retrieval is similarly verboten,
^s are cadaviric and, brain death. Tie
preferred terms are described as "the correct media termin ologyi, as if they,ve been deemed. acceptable by some centralized bureau of semantic ,r.l?.p-to.irl ,"c,1racy.
This,is fra-ming, and donor procurement agencies ,r" *"il-u.rred in the art. +r"How much will it cost my family io donate my tiisue and organs?,, reads a question from a FAQ on the website of community Tissue Services, an"ohio-based ,.onprofit. "There is no cost," reads the reply, as if the organization were offerilg a valuable ser- vice at bargain rates.
At times, the language of donation and the language of medicine are just a ++ I:T. click away. Take LifeNet, the virginia no,.pro"fitinot to be confused with LifeBanc of ohio, LifeGift of Texas, LifeSJurce of \,iinnesota, or Lifelink of F]orida. LifeNet runs hvo sites in hvo^disparate languages, o.r. dor.o.J:riendly and one doctor- friendly. Accesslifenet.org is for customers looLl,',g to buy, not families looking to give. The. site stresses
-quality,control, the engineering pro".rr, and service. ..LrfeNTet,s"pro-
cessing facilities," it explains, "are state of the art"and have been designed to minimize the risk of cross-contamination. They meet stringent regulatory, rIdurtry, and ISo standards. LifeNet's allograft tissues undergo extenlive d.rllop*Lr,t to ensure that the products m.eetjh-e surgeon's needs and pr".f"..r.."r." Images'of white-coated doctors confer an air of clinical legitimacy, iust iove a note that cirstomer service representa- tives are available "24 hours a day, )65 days a year.,,
LifeNet's "Donor Faniily Services bepartment" runs a very different site, hea_ +s Iingthespirit.org, with a stated mission to "promote healing ,"d p.;;; for organ and tissue donor families." The site's main irnage shows dapplld righi fouri,,,g t#o,rgh
"canopy of trees, the font of choice is a femlnized "urrir., "rrd"th.'ro.r.rd"or
ru.ii.rg water loops endlessly in the background.
The Barnard anthropologist^!.:l.y sharp has cailed such framing "the greening +o of the body " "Throughout the r990s," ,h. *rit , in the March 2001 isiue of Arnerican Anthropologi'st, "organ hansfer has experienced an astounding proliferation of metaphor- ical-language and ecological imagery." The imagery ,dur.,""., the idea that roved ones are being recycled, reborn through ihe gift of tis;e. Donor agencies sfurn thoughts of decay, death, and the ]oss of a specific ierson, steering patieits toward highly general- ized ideals of ]ife and regeneration. The inclustry,, *Jbrit., and literature include far more portraits of beaming toddlers than of the elderly who provide most of the tissue.
, where donor agencies do address loss, the irr.g,-rrg. i, .rrriu., metaphoricar, +z and almost comically devoid of content. A FAe ."pirr,l that ..all g.i"r i, unique,,,
297
298 CHAPTER 9 Who Owns Your BodY?
andfamilymemberscansendanyquestionsabouttheirowngrieftoa..bereavemerrt specialist" by email' Customer '""itt'?: T"
be available 7417'but the bereave-
rnent speciallst,eqt'l'eJ'ift'u "* *t"k to thi'-'k up an answer'"Yorl are brave to
weather the pain "f g'i;; t"'d' *" "tth
1o'tg-';'itti resPonse' "It is a long road and
a demanding iourney, '"a ""t one that others can navigate for us'"
Donor famities ^r.l"riiJ," raa,o r" ";;i; fi.-ory quilt," an oddlv digital +s
expression of grief *r;;i.e in cyberspace. Gri.vi,'rg family members are askecl to
choose trom a list of greeirng t"d-iikt messages' "tth " "Love so simple' so Pure' so
true...all in one pr..t;r';ilai. ..p"rf..il?rona belief." They then choose from a
set of brightly colored ilj,"ol;ii""*' "aiv bears' hearts-and add the square to
the pixelated quilt'
The DisassemblY Line
Predictably,theindustryc]aimsallofthisisforthebenefitoftlredonorfamily.Donor4g interests and those of the procurement
organtzation are assumed to be identical' Speas
savs careful word use is necessary to protect grieving donor f,.]lt1i:t from even more
,orro* as they r""d , "l;;t;;;'dy i"i" tt"t" a?*tiofi process' '.witl-r the BTS scandal'
all the old words were used," she complaint'ti,nt* 'l'k-:*[9,"nor families who
t r* giu.n the gift iust cringe' You knowifs.reallv all aborlt tnem'
p.R.machinerlti.'it;?il;r"Jwnrchavewell-established-systemsforrecruiting so
and processing doto"' WntC has been aIo"J fo' 20 years' and foi most of that period
itsmonopolyonlocalorqandonationpreventeditfromhavingtocompeteforthedead. But since no such #ffi#;'H;dil for tissue donation'
entrepreneurs have
appeared, encouraged by insatiable demand'
one of ,rr"* orli""r#;;B; Bardsrey, co-owner.of the Anatomy Gifts st
Registry (AGR) i" H;;"*r, Maryland. Brent and his brother fim started out as tissue
recovery coordinatorl ^a
,ir" i"r,i "te
fo, th. Aiva,-,cem.,',t of M"di"it'", a nonprofit
that recovers retat tissJe iro* t"rrrirrut.d pr.g"rr'r.ies for research.purposes. In I995
thev decided t" ,trik";;;;;-,t.i, o*',, r".i"ffiacR and eventually focusing on the
;:.:*"';i;i"ri .,J'"""t ti""t' all of it gifted bv altruistic donors'
AGR is officially a nonprofit' but it is'i'o u"ry much a start-un venture' and its sz
operations reveal a r"iri"r, i1," tension b.;."""',h: ,i,.atr. of altnrism and the real-
itv of the marketplace. Its headquarten sits in the last of a long row of single-story
brick
t'ffi.;,';";;";{;;ffi;;,i,f"u r ittle distinguishes the-outfit from its neighbors'
most of which have-cil; tuiJ lo."tio. for the same reason: proximity to delivery
nlanes.Someoftheneighboringbusinessesaresendingelectronicsalloverthecoun-
ilil ,f," *".fa g'rdsiey is dolng the same with body parts'
|im and Br.",;;;;i;f.g.3-r, +o to 50 donated bodi.s , month, extracting pieces
5r
and sending them offto *.hi.rl deui." .omprnies. Procttrinfl lir:",.
for research is less
lucrative th", ,.llir-,g il* i", Or"rpfantation, but it is also suLiect to fewer regulations'
when regulators complain that..you ""r', ,#, airr.,. bank in a garage," they're talking
about Places like AGR' Indeed, AGn i' pa't garage'part laboratory $ Iit".,1"d
Brent show me the cavern- t4
ous main storage ,i ., i*fri" ,i. ba.krright into the faciliq,. A woman ir"rmps out, opens
the back or tn" ,*,,, pl,,ii;;, ;;;;;r"a fi"ay,-r"J feeds it into a bodv cooler' One side
of the o "Weinr Crackir
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Kerry Howley Who Owns your Body parts?
of-the cooler opens at the drop-offpoint, and the other end opens ilto a dissection room. "we invented that system," says Brent, hands on his hips,
"u.i th. can-do business owner.
cracking open the body cooler to offer me a peek, Jimwarns, "It's punger-rt in here.,, The dissection room is smali, cold, and filled with steel. A colrpl. of sinks line 55
one wall; dissection tables line the other. At harvest time, two of the Bardsleys, six technicians will dissect a body at once. The two will look to fill specific orderr, li*br, internal organs, brain tissue, joints, and rvhatever else research.r, hru. requested. ,.We try to customize the recovery to rnaximize the donation," Brent explains, ,.to use as many tissues as possible."
A steel specimen refrigerator holds exhacted parts until the serological results se come back, when they will be released for sale. Untir then, the parts are wrapped in blue plastic and stored in freezers. The plastic package I'm starinj at, Jim infor'ms me, contains a pelvic girdle.
^ The Bardsleys are clearly more excited about an adjacent lab they're still prepar- lz
ing for use. As their business expands, ther.u,ant a room to rent out so clilicians can train there in the facility, and thev're building a sterile r,hite space to meet the latest biosafety standards. At the same time, much in the facilitv is secondhand equipn-rent cast off by medical schools. "That's-a vintage autopsl.sink,;'|im sa's, pointing.
Back in the cavernous main facility-, 20-odd fr."r.., contain pr.t *riti.rg to be ss shipped to medical device companies: spines, ioints, whore torsos. bn a raft above us are a set of styrofoam containers for packing. The room is dominated by a tall, iet-black machine in its center. Brent flipi it opJn to reveal a tiny pile of ashes and bone fragments. AII the parts that don't make it io the airport .o,rl i"r", to the cremator. when the ashes are ready, they're scooped into a plastic black box for mailing, labeled with the tracking number.
. Aq.l does not price parts based on demand. After all, on paper the Bardsleys i-o
aren't selling parts at all. They re selling recovery services at a -..reaso,able
price.,, Because the same amount of effort goes into recovering a cadaver heart as a cadaver lung, internal organs cost one flat fee: The cost ofa heait is the cost ofa lung. - Brent says he hasn't made up his mind about whether donors ,horrft be paid oofor parts, but he ur-rderstands the co,tention that donors deserve a piece of the pie. "organizations are standing to make r.oney, and why shouldn,t the iublic be able to participate?" he reasons. But when money is involved,ire adds,
,,the federal government
views th.is as coercing people to donate. we can't be perceivei as coercing people.,, . The Bardsleys have been criticized a, .r.rrcrrprrlous simply for covering crema- 6l
tion costs for donors; they are assumed to "coerce" poo, fr-iii", into don"ating by absorbing the cost of disposal. The resistance to alrowing
"rrh f";;;t;ent, says Brent
Bardsley, would be far stronger.
_ B-r, the_ Bardsleys do more than most to accommodate famiries; they,re ne\4i 62 a,nd agile, making up the rules as
lhey go along. Donor families worry about whether the ashes they get belong to their loueJ ones, Io the Bardsleys have i'nstalled security cameras to record the drop-off-to-cremation cycle. Farrilies sometimes want remains directed to certain research areas; when this is possible, AGR tries to comply. what families don't want, in many cases, is to know exactry what's going on-though the Bardsleys will show the facility upon request. "Most p.opl.,,' Bientiomments, ,.don,t ask for the grand tour."
299
300 CHAPTER 9 Who Owns Your BodY?
Scandal and Reform
During the last five years, scandals involving tissue procured and resold illegally o; have chipped away at the neat separatior-r between altruistic donation and big busi-,
,ress. UiLA, Tr-rlane, the University of Texas Medical Branch, and the University of California at Irvine have all been accused of reselling bodies donated for research. To
get a sense of how many lawsuits are currently pending, consider the way corporations
f,ru. .o*. to calibrate their legal troubles. "Of all the cases filed in state and federal court," LifeCell attorney David Field recently boasted to the Associated Press, "it
appears less than five possibly involve LifeCell." Doctors, journaiists, and legislators are apt to blame the profusion of scandal on o+
the pursuit of profit. Calls for reform rarely suggest that donors should be compensated;
profit i, p.r.eir.d as the problem, not the solution. In April Sens. Charles Schumer ln-X.V.;'r"a Patrick Leahy (D-Vt.) introduced the Safe Tissue Act, a bill that would, arnong more defensible measures, require the secretary of health and human services to
"promulgate regulations defining 'reasonable payr-r-rents"' for procuring and processing
tissue. hxtead o1 l.tting middlemen set their own prices, the government would set the
cost of recovering tissue and thr-rs the price of parts.
The bill ,er., *ad. it out of committee, though it is indicative of the quality os of solutions currently on the table. Price controls would do nothing to remove profit
from the system of exchange; biotech firms would still buy, manipulate, and resell
the tissue. While firms may find thernselves paying less for donor tissue under such a
regime, families would remain Lrncompensated and uninformed. The market would remain intact and unacknowledged, exploiting donors and their families.
The alternative reforrn-compensating donors, the crr-rcial source of material oo
upon which Iife-giving treatments depend-has hardly been discrrssed. Tissue markets aie a well-kept secret, and when scholars talk about creating markets for body parts,
they're us,-rally talking about kidneys, not skin and bone. The key difference behveen
tissue rnarkets and organ markets is that the former don't have to be created; they are
alreadr the primary means by which tissue fir-rds its way from donor to recipient.
bompensation to donors might take a variety of forms, from reimbursement of 6z funeral .tp.r.r., to charitable donation to direct payment. Tissue is already treated as properh' once it is processed; if it were legal property before it left the donor's body, ialei r*o,rld go to donors'estates along with other assets. Profits from their sale would be u'illed along sith the hor-rse and the car, left to favored gralidchildren and pet causes.
Many bioethicists u'orn that payment will create a hvo-tiered system, in which oa the bodies of the poor are repurposed to serve the rich. This argument assun'res that those looking to sell tissue n'ould be done material harm by actually selling it-that the mere choice to sell is a form of coercion. Goodwin, the DePaul professor and Black Markets author, argues that the poor har,e the most to gain. "l don't see any logic in allowing companies to han'est individuals' body parts purely for financial gain," she says, "and mlanwhile den,ving individuals the opportunity to pay off the costs of
funeral homes and medical expenses when their relatives die. Think about the cost
that poor families experience currently when they have to bury relatives. Their options
are, well, do we sell some furniture to pay for this funeral? Do we sell the car?"
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Kerry Howley Who Owns Your Body Parts? 301
The potential for wealth transfer is significant and, given the pace of biomedical os advance, sure to increase. And a formal market has another benefit, one whose neces- sity becomes more evident with each successive scandal: transparency. The same lack of transparency that discourages nonprofits from talk of moneymaking allowed Michael Mastromarino to strip-mine thousands of bodies, cor-rfident that potential donors wouldn't ask questions and biotech finns wouldn't look beyond the falsified records.
Exploitation and Repugnance
The history of transplantation has been one of overcoming visceral opposition-of zo re jecting what the prominent bioethicist Leon Kass calls "the wisdom of repugnance." Kass, the former head of the President's Council on Bioethics, believes disgust to be "the emotional expression of deep wisdom." Wise or otherwise, repugnance has always fr-reled opposition to transplantation. When doctors performed the first successful kid- ney transplant in 1954, they were accused of playing God and cannibalizing the dead. When a South Nrican doctor performed the first heart transplant l3 years later, he was met with the same refrain. Critics feared this new conceptual distance from the body; they warned of a future in which men and women treat the human machine like a run-down car, trading in old parts for new.
Half a century later, such predictions look less hysterical than prescient, less zt nightmarish than benign. Other medical advances have accelerated the process by contributing to general longevity, increasing the likelihood that an individual will wear out old parts-shotknees, worn joints-and find himself needing a replacement. It wouldn't have comforted the critics to know it, but the ability to exchange human parts has become routine, its absence unthinkable. The slope has indeed been slip- pery, and the benefits have been incalculable.
What remains of that initial repugnance is arbitrary and inconsistent. Patients zz have no problem paying for replacement parts, paying the surgeons who will implant them, paying the vast array of medical professionals who will nurse them back to health. For all the crowing over the benefits of altruism, no one has suggested that surgeons are tainted by the market that pays them so well; no one seems upset that biotech companies sell rather than donate their treatments. Patients and doctors cheer as new technologies find their way into the stream of corlmerce but recoil in revulsion at the thought ofpaying the donors at the source.
Beyond the visceral revulsion at Michael Mastromarino's ghoulish raids lies a zt bigger and more important story, one that offends on another level. The tissue trade in its current form violates basic ideas offair play, free exchange, equity, and honesty. These are wrongs at which our sense of repugnance has not diminished.
The Mastrornarino scandal continues to unfold. In October 2006, Brooklyn z+ prosecutors issued yet another indictment, accusing Mastromarino of enterprise cor- rr-rption. Two Philadelphia funeral homes were forced to close, and seven New York funeral directors pled guilty to related charges. A raft of post-transplant patients filed lawsuits, with others as far as Britain threatening to pile on.
Mastromarino, out on $1.5 million in bail, is looking at a possible 25 r'ears in ;; prison. Meanwhile, LifeCell is set to report its most profitable year ever.
302 CHAPTER 9 Who Owns Your Body?
READ!NG FOR CONTENT I . List the types of scandal in paragraphs 1-18 that pron-rpted the author to write this article. Z. Summarize Howley's explalation of the chief differer-rces behveen human tissue dona-
tion and organ donatiotr in paragraphs 24-15.
l. List the n.rajor issues raised by the testimony of scientists, social scier-rtists, and lawn-rakers in paragraphs 20, 27, 38, 46, and 64.
READING FOR GENRE, ORGANIZATION, AND STYLISTIC FEATURES
l. Hou, do paragraphs 36 and'll mark a turning point in the author's development of her argurrent?
2. Hor'v clo paragraphs 6J-69 cor-rtribuie to t1-re author's argument? 3. Reread paragraphs 70-75.Do they olfer a satisf,ing conclusion?
READING FOR RHETORICAL CONTEXT I. Paragraphs 37-40 rcfer to acadernic opinions by prolessors of law, antl.rropology, and
sociology about the marketing of tissue. How wouid these professors likely respond to the account of the Barclsley brothers' tissue-distribution business in paragraphs 5 I-62?
2. In paragraphs 70-75, what moral, social, and scientific contradictions remain unresolved?
WRITING ASSIGNMENTS 1. Use the "Prornpts lor Personal Response to the Text" on page J6 to write an inlormal
response to Kerry Howley's "Who Owns Your Body Parts?" Then convert your inforrnal response to a fornai response essa},. Use the tips we provide on page 39.
2. Draft an analysis essay in whicl-r you answer one or Inore of the following questions:
. How might hospitals, insurance agencies, or the governilrent set a price on human re- rnains for "re-purposirg"?
. How might they guarantee the medical quality of human tissue for "re-purposing"?
. How rnight they secure the legal acquisition and fair distribution of human tissue lor "re-purposing"?
:^!^.tuWWAMW.:"::
Donors Have No Rights to Donated Tissue
kisten E. S chleiter, I D, LLM
Kristen E. Shleiter, JD, LL"M, is o senior resecrch cssoclote for the Council on Ethical and Judiciol Affairs
for the American MedicolAssoclotlon in Chicogo. She onolyzes ethics policy ond law ond cssrsts ln
developing and disseminating ethics policy and reloted moteriols.
Sclrleiter, Kristen E. "Donors llave No Rights to Donated Tissue." American Medical Association lournal of Ethics 11.8 (ALrg. 2009): 67I-25. Web. 28 Sept. 2010. <http://www.virtual@ Arnerican Medical Association. A1l Rights Reserved.
