Informing Donors About Hand and Face Transplants: Time to Update the Uniform Anatomical Gift Act, 10 J

DATE DOWNLOADED: Thu May 7 19:30:08 2020 SOURCE: Content Downloaded from HeinOnline

Citations:

Bluebook 20th ed. Brendan Parent, Informing Donors about Hand and Face Transplants: Time to Update the Uniform Anatomical Gift Act, 10 J. Health & Biomedical L. 309 (2015).

ALWD 6th ed. Brendan Parent, Informing Donors about Hand and Face Transplants: Time to Update the Uniform Anatomical Gift Act, 10 J. Health & Biomedical L. 309 (2015).

APA 6th ed. Parent, B. (2015). Informing donors about hand and face transplants: Time to update the uniform anatomical gift act. Journal of Health & Biomedical Law, 10(3), 309-326.

Chicago 7th ed. Brendan Parent, "Informing Donors about Hand and Face Transplants: Time to Update the Uniform Anatomical Gift Act," Journal of Health & Biomedical Law 10, no. 3 (2015): 309-326

McGill Guide 9th ed. Brendan Parent, "Informing Donors about Hand and Face Transplants: Time to Update the Uniform Anatomical Gift Act" (2015) 10:3 J of Health & Biomedical L 309.

MLA 8th ed. Parent, Brendan. "Informing Donors about Hand and Face Transplants: Time to Update the Uniform Anatomical Gift Act." Journal of Health & Biomedical Law, vol. 10, no. 3, 2015, p. 309-326. HeinOnline.

OSCOLA 4th ed. Brendan Parent, 'Informing Donors about Hand and Face Transplants: Time to Update the Uniform Anatomical Gift Act' (2015) 10 J Health & Biomedical L 309

Provided by: The Moakley Law Library at Suffolk University Law School

-- Your use of this HeinOnline PDF indicates your acceptance of HeinOnline's Terms and Conditions of the license agreement available at https://heinonline.org/HOL/License -- The search text of this PDF is generated from uncorrected OCR text. -- To obtain permission to use this article beyond the scope of your license, please use: Copyright Information 309

Journal ofHealth & Biomedical Law, X (2015): 309-326 0 2015 Journal ofHealth & Biomedical Law Suffolk University Law School

Informing Donors about Hand and Face Transplants: Time to Update the Uniform Anatomical Gift Act

Brendan Parent'

Abstract:

Hands andfaces are now legally considered organsfor donationpurposes. To procure them for transplant, explicit consent is requiredfrom either the donor during his ife, orfrom a surrogate after death. Because most people do not consider hand andface donations when deciding whether to become donors, and no donor registU explicity explains that hands andfaces are donatableparts, consentfalls to surrogates. The benefits of rehabilitation and social reintegrationfor hand andface recpients are proving szgnicant. However, this does not justify transplanting hands andfaces from deceasedpeopl who were not adequately informed while alive that these bodj parts mlght be donated unless thy explicitly refuse. Some people might not want to donate uniquely expressive body parts while wanting to donate other organs. As the practice becomes more widey known, lack of transpareng may diminish the availability of other organs zf people find they cannot easily opt out of hand and face or other composite tissue donations. The Uniform Anatomical Gift Act should be amended to encourage state donor registries to inform donors about all tpes of transplants and to provide clear mechanisms for opting in and out of specijic types of donations.

Introduction

In early July of 2014, hands and faces were added to the definition of "organs" used by the nation's organ and tissue procurement agencies for the purposes of donation and transplantation. 2 However, if a person registers as a donor either through

1 Brendan Parent, JD, is a Rudin Post-Doctoral Fellow in the division of Medical Ethics at NYU Langone Medical Center, and is a Clinical Assistant Professor at the NYU School of Professional Studies. He also is a consulting attorney for the NY Task Force on Life and the Law. Parent received his undergraduate degree in Bioethics from the University of California, Santa Cruz, and his law.degree from Georgetown University Law Center. He thanks his supervisor, Art Caplan, for the idea and his wife, Jane Pucher, for consistently insightful critique. The author of this manuscript has no conflicts of interest to disclose. 2 See Organ Procurement and Transplantation Network, Vascular Composite Allografts to be Added to OPTN Final Rule and FederalDefinitions of Organs, U.S. DEP'T OF HEALTH & HUMAN SERVS. (July 310 JOURNAL OF HEALTH & BIOMEDICAL LAW [VOL. X NO. 3 the Department of Motor Vehicles (hereinafter "DMV") or an online registry, his hands and face are not automatically available for procurement.3 A new policy requires consent specifically to face or hand donation, either from the individual himself during his life, or from a surrogate after his death. 4 Because these transplant procedures are new and registries are not required to disclose explicit information about them, it is unlikely that many people currently consider them when deciding whether to become donors, so control over the donor's hands and face will almost always fall to a 5 surrogate. For some individuals who experience severe facial trauma or limb loss, these composite tissue transplants can provide restored function and social reintegration.6 However, the benefits do not justify transplanting hands and faces from deceased donors who were not adequately informed while alive that these body parts are options for organ donation, regardless of whether surrogates consent on their behalves. As these transplant procedures become more common, lack of information, misinformation about their purposes, or poor outcomes might cause people to explicitly seek to opt out of donating their hands and faces. Worse still, concerns about donating the face, hand, or other composite tissues might cause potential donors to refuse all organ donation if

5, 2013), http://optn.transplant.hrsa.gov/news/vascular-composite-allografts-to-be-added-to- optn-final-rule-and-federal-definitions-of-organs/ (last visited Nov. 22, 2014). (describing the decision to include hands and faces to the regulation defining organs). See generally About Us, UNITED NETWORK FOR ORGAN SHARING, http://www.unos.org/about/index.php (last visited Nov. 22, 2014) (describing UNOS as a "private, non-profit organization that manages the ... organ transplant system under . . . the federal government"). 3 Sydney Lupkin, Face and Hand Transplants Get OfficialPoliy, ABC NEWS (July 2, 2014, 10:32 AM), http://abcnews.go.com/Health/face-hand-transplants-official-policy/story?id=24383413 (last visited Nov. 22, 2014). 4 See Policies, Autbori.ation Requirement, ORGAN PROCUREMENT TRANSPLANTATION NETWORK, at 28 (October 30, 2014), available at http://optn.transplant.hrsa.gov/ContentDocuments/OPTN Policies.pdf (explaining that hands or faces must be explicitly authorized by the donor before they are procured) (last visited Nov. 22, 2014) (hereinafter "OPTN Policies'). See generaly National Committee Forned to Develop Network Policiesfor Hand, Face Transplantaon, TRANSPIANT LIVING, http://www.transplantliving.org/community/newsroom/2014/01/national-committee-formed- to-develop-network-policies-for-hand-face-transplantation/ (last visited Nov. 22, 2014) (describing the goals in developing standards for VCA transplants to ensure the best possible outcomes). 5 See Sue V. McDiarmid, Donor and Procurement Related Issues in VasculariZed Composite Allograft Transplantation, 18 CURRENT OP. ORGAN TRANSPLANT 665, 667-68 (2013) (describing the consent process and unique considerations for recipients of hands and faces). 6 SeeJ. Rodrigo Diaz-Siso et al., VascularigedComposite Tissue Allotransplantation - State of the Art, 27 CLINICAL TRANSPLANTATION 330, 331 (2013); see Bohdan Pomahac et al, Restoration of Facial Form and Function After Severe Difigurementfrom Burn Injury by a Composite FacialAllograft, 11 AM. J. TRANSPLANTATION 386, 387-91 (2011). A patient who suffered a high voltage electrical burn injury underwent a facial transplant procedure. Id. at 387. The patient returned home five weeks after the operation and "became fully reintegrated into the community with enhanced social capacity." Id. at 390. 2015] JOURNAL OF HEALTH & BIOMEDICAL LAW 311 they do not have clear knowledge about and options for refusing only hand and face donations.

I. Nature and Status of Face and Hand Transplants

Face and hand transplants, which are both vascularized composite allografts (hereinafter "VCAs"), are not life-saving procedures.7 But for some, a VCA transplant might make life more bearable and could potentially reduce the rate of suicide.8 While part of the intended outcome is improved aesthetic appearance, these procedures are never strictly cosmetic.9 The operations are performed to restore basic functional abilities1 0 and end social isolation." Early data regarding face transplant outcomes show significant improvements to function and quality of life,12 and hand transplants show functional results on par or better than prosthetics and hand replants.13 VCAs allow for

7 See White, B. E. & Brassington, I., FacialAllograft Transplants: Where's the Catch?, 34 J. MED. ETHICS 723, 723 (2008); see Gerald Brandacher, David H. Sachs & Angus W. Thomson, Immunology of Vascularied Composite Allografts, 2013 CLINICAL DEv. IMMUNOLOGY 1 (2013) (explaining VCA considered life-enhancing treatment rather than life-saving treatment). 8 See Mark D. Hanson, Ronald M. Zuker & Randi Zlotnik Shaul, Pediatric Facial.Burns:Is Facial Transplantationthe New Reconstructive Psychosurgery?, 16 CAN.J. PLASTIC SURGERY 205, 208-09 (2008) (hypothesizing facial transplantation can reduce risk of depressive disorders for pediatric facial burn victims). 9 See Aleksandra Klimczak & Maria Z. Siemionow, ImmunologicalAspects of Face Transplantation,in THE KNOW-How OF FACE TRANSPLANTATION 25, 26 (Maria Z. Siemionow ed., 2011) (explaining face transplantation helps restore anatomic and functional as well as cosmetic integrity). 10See Warren C. Breidenbach III et al., A Position Statement in Support of Hand Transplantation, 27 J. HAND SURG. 760, 766-67 (2002) (explaining that hand transplants help restore the perception of touch and manipulation of objects); White, supra note 7, at 724 (explaining that face transplants help restore blinking, breathing, and chewing). " See George J. Agich, Ethical Apects of Face Transplantation, in THE KNOW-How OF FACE TRANSPLANTATION 131, 136 (Maria Z. Siemionow ed., 2011) (noting individuals who do not have surgery face "a life of social isolation"); Susan Okie, Facial Transplantation: Brave New Face, 354 NEW ENG. J. MED. 889, 890 (2006) (explaining that surgery can help remedy issue of social isolation); H. H. Sinno et al., Utility Scoresfor FacialDisfigurement Requiring Facial Transplantation, 126 PLAST. RECONSTR. SURG. 443, 447-48 (2010) (comparing quality of life for individuals with such disfigurement to individuals with other diseases); Laurent Lantieri, Face Transplant: A Paradigm Change in Facial Reconstruction, 23 J. CRANIOFACIAL SURG. 250, 250 (2012) (noting patients' reintegration as one of the goals of face transplants). 12 See Blake D. Murphy et al., Vasculariged Composite Allotransplantation:An Update on Medical and Surgical Progress and Remaining Challenges, 66 J. PLAST. RECONSTR. AESTHET. SURG. 1449, 1453 (2013) (explaining early outcome reports indicate substantial return of various motor functions and sensory capabilities); supra note 6, at 331 (noting positive outcomes of face transplants); Agich, supra note 11, at 133 (explaining recipients show decreased depression, improved quality of life, and social reintegration). 13 See Warren C. Breidenbach III et al., Outcomes of the First 2 American Hand Transplants at 8 and 6 Years Posttransplant,33 J. HAND SURG. 1039, 1045 (2008) (explaining outcomes of hand transplant 312 JOURNAL OF HEALTH & BIOMEDICAL LAW [VOL. X NO. 3 the replacement of missing tissue with "like" tissue from a donor, which eliminates donor site morbidity and minimizes the need for multiple reconstructive procedures.14 Accordingly, hand and face transplants carry great promise for improved quality of life.

VCA transplants, however, are not free from complications.1 5 Patients who receive hand or face transplants have to undergo a lifelong regimen of immunosuppression,16 and incur risks of chronic transplant rejection.17 Patients who experience face transplant rejection can undergo autologous grafts (using skin from the patient's own body)'1 and there are cases of hand transplants amputated due to patients, who demonstrated functionality superior to most prostheses recipients); Breidenbach III et al., supra note 10, at 767 (noting even early hand transplant data suggested greater success in hand transplants than prostheses). 14 See Murphy et al., supra note 12, at 1450. See also F. Schuind, Hand Transplantation and Vasculariged Composite Tissue Allografts in Orthopaedics and Traumatology, in ORTHOPAEDICS & TRAUMATOLOGY: SURGERY & RESEARCH 283 (2010) (using vascularized grafts will avoid donor cite morbidity); Vijay S. Gorantla et al., Upper Extremity Composite Allotransplantation,in PLASTIC SURGERY: HAND AND UPPER EXTREMITY 833, 843 (2013) (finding recipients of allotransplantation are otherwise healthy without co-morbidities or multiple reconstructions). 1s See Karim A. Sarhane et al., Diagnosing Skin Rejection in Vasculatkied Composite Allotransplantation: Advances and Challenges, 28 CLINICAL TRANSPLANTATION 277 (2014) (finding skin rejection remains a serious complication for VCA recipients); Francois Petit, MD et al., Composite Tissue Allotransplantationand Reconstructive Surgey 237 ANNALS OF SURGERY 19, 23-24 (2003) (finding risk of metabolic disorders, malignancies, infections is the major limiting factor in tissue allotransplantation). 16 See M. Siemionow and C.R. Gordon, Overview of Guidelinesfor Establishing a Face Transplant Program: A Work in Progress, 10 AMERICAN JOURNAL OF TRANSPLANTATION 1290, 1293 (2010) (explaining that transplantation comes with life-long immunosuppression and its side effects); Karim A. Sarhane, A CriticalAnaysisof Rejection in Vasculariged CompositeAllotransplantation: Clinical, Cellular,and Molecular Aspects, Current Challenges, and Novel Concepts, 4 FRONTIERS IN IMMUNOLOGY 1, 3-4 (2013) (discussing chronic rejection in VCA and noting immunologic and non- immunologic factors are involved). Approximately eighty-five percent of VCA patients experienced one episode of skin rejection in the first year, and fifty-six percent experienced multiple episodes. Id. at 1. See Vijay S. Gorantla et al., Perspectives on the Use of Mesencymal Stem Cells in VasculariZed Composite Allotransplantation, 4 FRONTIERS IN IMMUNOLOGY 1 (2013) (noting long-term graft acceptance in VCA possible under standard immunosuppression). See David A. Leonard et al., Tolerance Induction Strategies in Tasculariked Composite Allotransplantation: Mixed Chimerism and Novel Developments, CLINICAL AND DEVELOPMENTAL IMMUNOLOGY 1 (2012) (immunosuppressant medication controls acute graft rejection, but not chronic rejection); Karim A. Sarhane et al., Minimiation of Immunosuppression and Tolerance Induction in Reconstructive Transplantation, 1 CURRENT SURGERY REPORTS 40 (2012) (noting multi-drug high-dose immunosuppression has many side effects and has hindered widespread clinical application of VCA). See generally Breidenbach III et al., supra note 10 (implying long term success of hand transplants relies on constant immunosuppression). 17 See Agich, supra note 11, at 135 (finding transplant rejection is one of the most well-recognized medical risks of face transplantation). 18 Rhonda Gay Hartman, They Face of Dignity: Princibled Oversight of Biomedical Innovation, 47 SANTA CLARA L. REV. 55, 72 (2007). "[Flace transplant candidates have other viable options, such as an 2015] JOURNAL OF HEALTH & BIOMEDICAL LAW 313 rejection,19 which imply that VCA rejection does not necessarily put the patient's life at risk. However, for the following reasons, VCA transplant rejections are incredible losses of time, money, and mental preparation for all parties involved. 20 Institutional Review Board (hereinafter "IRB') approval can take up to two years, 21 and insurance will not cover the research costs, which can climb upwards of 1.5 million dollars. 22 When the transplant is physically successful, physical and mental rehabilitation is arduous and time consuming.23 Accordingly, potential patients must be rigorously screened for psychological and physical fitness, 24 and must undergo elaborate consent procedures. 25

autologous skin graft." Id. See Carmen Ramis, MD & Silvia Hines, Scars, Scarring Diseases and Their Treatment: Treatment of Scars, ArrORNEYS' TEXTBOOK OF MEDICINE P 65D.30 (3rd ed. 2014). Autologous materials are materials recovered from one's own body. Id. "In contrast to foreign substances, autologous . . . materials stay in place longer because they are not easily targeted by enzymes or antibodies; allergic reactions are avoided." Id. See also Rhonda Gay Hartman, Face Value: Challenges of TransplantTechnology, 31 AM. J. L. AND MED. 7 (2005) (discussing the challenges of a facial transplantation procedure); Juan P. Barret, MD, PhD et al, Full Face Transplant. The First Case Report, MEDSCAPE MULTISPECIALTY (last visited Oct. 21, 2014) http://www.medscape.com/viewarticle/746889_5 (discussing failures of autologous tissue transfers to replace facial tissue); UCLA Health, Frequenty Asked Questions, (Nov. 2003) http://transplants.ucla.edu/body.cfm?id=211#transplant-fails (last visited Nov. 17, 2014) (answering questions of transplantations). 19 Hand Transplant Patients Experience Both Success, Failure, Healio Orthopedics Today (Nov. 2003), http://www.healio.com/orthopedics/hand-wrist/news/print/orthopedics-today/%7B0bad0cde- 4843-4ecd-9ee2-f221 7f51 d372%7D/hand-transplant-patients-experience-both- success-failure (discussing successes and failures of confirmed hand transplants from 1998 to 2003). 20 See Chad R. Gordon & Maria Z. Siemionow, The Institutional Review Board Approval Process, in THE KNOw-How OF FACE TRANSPLANTATION 245, 248 (Maria Z. Siemionow ed., 2011) (discussing face transplant protocols/programs require long-term "time, money, and manpower"). The transplant team usually includes a transplant team leader, six to ten surgeons with fresh-cadaver mock face transplant experience and a range of expertise, an immunologist, an infectious disease expert, a social worker, an ethicist, and a transplant psychiatrist. Id. 21 Id. (explaining that approval requires a detailed report of three transplant phases: pre, peri, and post). See 21 C.F.R. § 56.102(g) (2014). An Institutional Review Board ("IRB") can be constructed of a board or committee of the sort, formally designated to review and approve research involving human subjects. Id. "The primary purpose of such review is to assure the protection of the rights and welfare of the human subjects." Id. 22 Siemionow and Gordon, supra note 16, at 1294 (explaining how research costs can reach upwards of 1.5 million dollars). 23 See Pamela L. Dixon et al., Physical Medicine and Rehabilitation after Face Transplantaion, in THE KNOW-How OF FACE TRANSPLANTATION 151, 153, 159-66 (Maria Z. Siemionow ed., 2011) (explaining, for example, nerves must regenerate and the recipients must relearn how to use muscles); Katrina A. Bramstedt, Informed Consentfor Facial Transplantation, in THE KNOW-How OF FACE TRANSPLANTATION 255, 257 (Maria Z. Siemionow ed., 2011) (explaining that patients must face myriad challenges related to body image and identity). 24 See Chad Gordon et al., The Cleveland Clinic FACES Score: A Preliminary Assessment Tool for Identffing the Optimal Face Transplant Candidate, 20 J CRANIOFAC. SURG. 1969, 1969 (2009) and Martin Kumnig et al., The psychological assessment of candidatesfor reconstructive hand transplantation, 25 TRANSPL. INT. 573, 573 (2012) (explaining patients are screened for factors, including likelihood 314 JOURNAL OF HEALTH & BIOMEDICAL LAW [VOL. X NO. 3

Despite these risks and hurdles, the field of VCA transplants is rapidly advancing. 26 At least twenty-five whole face transplants have been performed to date in seven different countries, not including partial face transplants. 27 Hand transplants number above seventy.28 While the first face transplant was performed in 2005, most were performed in the past 5 years, indicating rapid acceleration of the practice. 29 There are likely thousands of face transplant candidates, 30 and tens of thousands of hand transplant candidates.3 1 Financial backing from hospitals and donors, interested medical teams, and potentially interested recipients demonstrate that demand for face and hand transplants will likely continue to expand in coming years. 32 of medical compliance, psychosocial fitness, and health status of vital organs). 25 Bramstedt, supra note 23, at 255-58. Consent requires ensuring patients have decision making capacity, informing them about alternatives, risks, and likelihood of media attention, and making sure they understand that VCA transplants are research, not medical practice. Id. 26 GERALD BRANDACHER, Composite Tissue Tran.plantation,in TRANSPLANTATION IMMUNOLOGY: METHODS AND PROTOCOLS 103, 103-115 (2nd ed. 2013) (citing increase of VCA transplants over past decade with highly encouraging outcomes). See also Gerald Brandacher et al., Hand Allotransplantation, 24 SEMINAL PLASTIC SURGERY 11, 11-17 (Feb. 2010), available at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2886996/#r24011-8 (discussing the evolution of hand transplants and advanced research). 27 See Murphy et al., supra note 12, at 1453 (discussing twenty-five patients that received face transplants since 2005); Lantieri, supra note 11, at 250 (discussing seventeen face transplants performed to date); Gordon and Siemionow, supra note 20, at 246 (discussing increasing number of whole face transplants). 28 See Palmina Petruzzo and Jean-Michel Dubernard, InternationalRegistry on Hand and Composite Tissue Allotransplantation, 2011 CLINICAL TRANSPLANTATION 247 (listing thirty-nine upper- extremity transplants); Vijay S. Gorantla et al., Early Outcomes of Cell Based Immunomodulation in Upper Limb Allotransplantation - The PittsbuTh Expeience, 90 TRANSPLANTATION 2831 (2010) (listing fifty-seven hand, forearm, and arms transplants performed on thirty-nine patients). 29 See Murphy et al., supra note 12, at 1453 (providing chart demonstrating number of face transplants increasing since 2005). 30 See Okie, supra note 11, at 890 (estimating thousands of people in United States have severe facial trauma). 31 See Murphy et al., supra note 12, at 1451 (explaining over half of 100,000 upper extremity amputees are not prevented from U.S. hand transplants). 32 See Kevin Hartnett, ForTransplant Purposes, Your Face is Now an Organ, BOSTON GLOBE, Aug. 17, 2014, available at http://www.bostonglobe.com/ideas/2014/08/16/for-transplant-purposes- your-face-now-organ/SMwfkg2IbU7wTNn3ELLj9J/story.html (explaining that hands and faces are now considered organs that can be donated upon death); Liz Kowalczyk, Children's Starts Hand Transplant Program: 1st in the World for the Young, BOSTON GLOBE, June 17, 2013, available at http://www.bostonglobe.com/lifestyle/health-wellness/2013/06/16/boston-children-hospital- starts-world- first-pediatric-hand-transplant-program/j rIvMBDzfeE43ku5WfZhxK/story.html (explaining that Boston Children's Hospital has developed the world's first hand transplant program for children); Liz Kowalczyk, The Future of Face and Hand Transplants, BOSTON GLOBE, Mar. 17, 2014, available at http://www.bostonglobe.com/ifestyle/health-wellness/2014/03/16/ organ-transplant-leaders-creating-national-system-allocate-hands-faces-disfigured-patients/hOVL dmJ7S4CGIUjHIEYEIO/story.html (explaining that many more hospitals are in the process of developing face transplant programs). 2015] JOURNAL OF HEALTH & BIOMEDICAL LAW 315

II. Overview of Ethical Issues

In addition to understanding the nature and practice of VCA transplants, potential donors should also be aware of related ethical concerns as they make their donation registration decisions. For many, there is something more ethically troublesome about donating a face or hand than donating a heart or a kidney. 33 Hands and faces are the most prominent conduits for emotional expression. 34 Our identities are conveyed through hands and faces and are reinforced by them.35 Transferring uniquely expressive body parts to others with no relation or knowledge of the donor's life history raises concerns about the identity of both the donor and the recipient.

VCA procedures are resource intensive, costly, and require years of preparation. 36 If VCAs were not performed, the health professionals' time and the hospital's money might be applied toward other, possibly life-saving, procedures. It is likely that many people with upper limb loss or severe facial trauma must live with major skin grafts or prosthetics because there are not enough teams to perform VCA transplants for all potential candidates. 37 Furthermore, some potential candidates might not satisfy screening requirements. The physical differences of these individuals pose obstacles to social acceptance.38 While it is more common to ask the individual to

33 See Michael Freeman & Pauline Abou Jaoude, Justifing Suregr's Last Taboo: The Ethics of Face Transplants,33 J. MED. ETHICS 76, 76 (2007). The face "represents identity in a way no other part of the body does." Id. If a recipient of a hand transplant later regrets the decision, he can have the transplanted hand amputated, but that would not be possible for a person who might regret a face transplant. Id. at 79. Questions also remain as to whether the recipient and the recipient's family will be able to adjust to the new face, as the recipient will not look the same as he did before the disfigurement which led to the transplant. Id. 34 L. Allen Furr et al., Psychosocial Implications of Disfigurement and the Future of Human Face Tranrplantation, 120 PLASTIC AND RECONSTRUCTIVE SURGERY, 559, 560 (2007); Rhonda Hartman, Face Value: Challenges of Transplant Technology, 31 AM. J.L. & MED. 7, 7 (2005). The face is "a portal for emotions and expressions, the face reveals an inner-self essential to identity and is inscribed with an inherent dignity of human life." Id. "The face, our most distinguishing feature, dictates how others perceive, identify, think about, and remember us." Id. 3s See Hartman, supra, note 34, at 7 (noting "human face remains... quintessence to personal image"). 36 See Gordon and Siemienow, supra note 16, at 1294 (explaining depth of transplant team, transplant costs, and amount of time required for IRB review). 37 See id. (describing the necessary time and resources for face transplant); Murphy et al., supra note 12, at 1453 (enumerating locations that have performed face transplants prior to 2013). The small number of locations that have approval and sufficient resources to perform VCA, juxtaposed with the great number of potentially eligible candidates, makes this procedure unlikely for most victims for at least the foreseeable future. Id. at 1453. 38 See Sathnur B. Pushpakumar et al., Psychosocial Considerations in Face Transplantation, 36 BURNS 951, 957 (2010) (explaining victims of severe facial disfigurement experience social isolation and unhappiness); Rick Bowers, The Stigma of Disability and Limb Differences, INMOTION, July-Aug. 316 JOURNAL OF HEALTH & BIOMEDICAL LAW [VOL. X NO. 3 conform to societal norms of appearance, it is also possible to ask society to become more accepting. Promoting transplant treatment for facial trauma and limb loss does not improve social acceptance of physical difference, and might make life harder for people with grafts and prosthetics. Presently, people with skin grafts covering significant portions of their faces and people with mechanical hands are subject to serious social stigma.39 As face transplant procedures become the expected norm of treatment but remain inaccessible to many who could benefit, social acceptance of these individuals might diminish even further. If the greatest advantage of VCAs over grafts and prostheses is social quality of life, campaigns advancing social acceptance of physical difference might diminish the need for face and hand transplants.

Facts about VCA practices provide important counterpoints to these concerns. VCA transplant procedures are already producing significant improvements to individuals' lives; this fact alone supports the value of VCA resource investment. 40 To assuage some of the "identity transfer" concerns, studies using three-dimensional virtual transplants show that the appearance of the donor has a low likelihood of transfer to the recipient. 41 Additionally, the procedures are performed for functional improvement of vision, breathing, eating, and sleeping as much as aesthetic improvement. 42 If these transplants can provide functional improvements superior to existing alternatives, then

2002, at 35, 36 (describing multitude of stigmas associated with limb differences). 39 See Furt et al., supra note 34, at 559 (saying facial disfigurement "leads to prejudice and discrimination, stereotyping, and, frequently, social isolation"). Further, as a result of being the target of stigmatization, individuals with facial disfigurement are often treated disrespectfully and are relatively socially powerless when compared with individuals without the perceived abnormality. Id. 40 See Diaz-Siso et al., supra note 6, at 331 (describing improved motor function and social reintegration among recipients of successful face transplants); Breidenbach et al., supra note 10, at 767 (providing positive statistical data supporting hand transplantation over prostheses); Murphy, supra note 12, at 1453-54 (describing positive outcomes following face transplantation). 41 See Akash Chandawarkar et al., FacialAppearance Tranfer and Persistence After Three-Dimensional VirtualFaceTransplantation, 132 PLASTIC RECONSTRUCTIVE SURGERY 957, 965-66 (2013); Bohdan Pomahac, Evaluation of Appearance Transfer and Persistence in CentralFace Traniplantation:A Computer Simulation Analysis, 63 JOURNAL OF PLASTIC RECONSTRUCTIVE & AESTHETIC SURGERY 733, 737 (2010). Appearance transfer is affected largely by underlying bone structure, muscle and cartilage, and even in virtual cases that mimicked transplant of these tissues, appearance transfer rate was low. Id. Furthermore, the results of the study published here prove that human's concept of identity is related to a "holistic facial perception" rather than identifying individual features. Id. 42 See White and Brassington, supra note 7. There are concerns regarding physical identity transfer associated with FAT procedures; however, those concerns are misplaced. Id. Medically speaking, the reason is because during FAT, the recipient only receives the soft tissue of the donor and therefore the donor's identity would not transfer merely with the grafting of soft tissue. Id. The recipient in a sense has already lost their physical identity due to the disfigurement, and with the grafting of the soft tissue would gain a new identity. Id. 2015]1 JOURNAL OF HEALTH & BIOMEDICAL LAW 317 the medical community should strive to place VCAs among standard therapeutic options.

Donors should also consider the cases of people living with facial grafts or limb prosthetics without significant functional disability. The line between aesthetics and function is blurred when an individual's disfigurement prevents her gainful employment or comfort in public due to inevitable discrimination. It is unfair to require those living with severe disfigurement, even if they retain their functional abilities, to live in social isolation until the public accepts their physical differences. VCA transplants in conjunction with VCA education and exposure is likely a far more effective path to social acceptance for these individuals than education alone.

III. Donor Consent

Potential donors should have access to adequate VCA information to substantiate their donation decisions. Inadequate donor consent practices, however, prevent donors from easily exercising informed personal choice regarding VCAs. Problems with donor consent can be addressed with minor policy changes, which would enable personal choice for all donors. Because VCAs are so new and there is no requirement associated with donor registration to disclose information about VCAs - or about any specific transplant, for that matter - most donors are likely unaware that hand and face transplant donation opportunities exist.43 Because of the unique nature of these body parts, there could very well be a discrepancy between those who want to be solid organ donors and those who want to be VCA donors.

An informal surveying of medical students, medical professionals, bioethicists, and the general public by the author consistently demonstrates this discrepancy: most registered organ donors do not know their faces and hands are donatable, and many would consider changing their donation status to exclude hand or face after learning this fact.44 A formal survey of over one thousand patients, family members, and friends in a New Jersey hospital emergency department indicated that respondents were most willing

43 See McDiarnid, supra note 5, at 667 (explaining that registered donors may not know they also register to donate hands and faces). 44 Survey by Brendan Parent, Informing Donors about Hand and Face Transplants, at NYU Langone Medical Center (March 26, 2014); Survey by Brendan Parent, Informing Donors about Hand and Face Transplants, at The Hastings Center (Jan. 15, 2014); Survey by Art Caplan, The Ethics of Face Transplantation, at Weill-Cornell Medical Center (May 16, 2013); ); Survey by Art Caplan, Ethics of High Risk Research - The Case of Face and Limb Transplantation, at NYU Langone Medical Center (Jan. 10, 2013); Survey by Art Caplan, Ethics of Plastic Surgery Symposium, at NYU Langone Medical Center (Nov. 13, 2012). 318 JOURNAL OF HEALTH & BIOMEDICAL LAW [VOL. X NO. 3

to donate a kidney (78.70/), liver (77.8/o), or heart (77.4%) and least willing to donate a face (47.0%) or hand (58.2%).45 A survey in Turkey of almost one thousand people, including medical professionals, indicated that while 6 6 .6 % of respondents were willing to donate organs, only 50.8% were willing to donate their faces. 46

Current consent practice regarding VCA donation relies heavily, if not exclusively, on surrogate decision makers. 47 Although family members occasionally overrule donor consent to other organs,48 the reliance on surrogate decision makers for VCA transplant differs markedly from consent policy for other organ donations. 49 For most organs, the donor himself consents during his lifetime by providing either general intent to donate his whole body,s0 or specific intent to donate a particular organ or organs. 5' If the donor did not consent to donation of a specific organ (by providing either general or specific intent), and also did not explicitly refuse donation for that particular organ, then a surrogate decision maker must consent before procurement. 52 The surrogate decision maker is chosen according to a hierarchy, which establishes an agent chosen by the donor at the top, followed by a spouse, and then a list of family

45 See David Sarwer et al., Attitudes Towards Vasculariged Composite Allotransplantationof the Hands and Face in an Urban Population, VASCULARIZED COMPoSITE ALLOTRANSPLANTATION (forthcoming 2015) (analyzing study results about attitudes towards hand and face transplantations in comparison to solid organ transplantations). 46 See generaly Selahattin Osmen, et al., Would You Be a Face TransplantDonor? A Survey of the Turkish Population About Face Allotransplantation, 71 ANNALS OF PLASTIC SURGERY 233, 234 (2013) (discussing research results from survey of Turkish people on their perceptions and thoughts regarding face allotransplantation). 47 See Bohdan Pomahac et al., Three Patients with Full Face Transplantation,366 NEW ENG. J. MED. 715, 716; McDiarmid, supra note 5, at 667; Bohdan Pomahac et al., Donor FacialComposite Allograft Recovery Operation: Cleveland and Boston Experiences, 129 J. AM. Soc. OF PLAS. SURG. 461e, 462e (2012) [hereinafter Cleveland and Boston Experiences] (describing how donor families approached for consent to face transplant, implying absence of actual consent). 48 Ashley Christmas et al., Organ Donation: Family Members NOT Honoring Patient ishes, 65 J. OF TRAUMA, INJURY, INFECTION, AND CRITICAL CARE 1095, 1095 (Nov. 2008) (discussing missed opportunities for donation due to lack of familial consent). 49 Axel Rahmel, VasculariZed Composite Allografts: Procurement, Allocation, and Implementation, 1 CURRENT TRANSPLANTATION REPS. 173, 173 (2014), available at http://link.springer.com/ article/10.1007%2Fs40472-014-0025-6 (explaining that consent to 'organ donation' in donor registries does not include consent to VCA donation). s0 See UNIF. ANATOMICAL GIFT ACT § 11(f) (2006) (detailing if donor does not specify purpose, gift is only of donor's parts, not whole body). 51 See id. at § 11(c), (e) (mandating if gift is of specific parts, gift may be used only for transplantation or therapy). 52 See id. § 9 (explaining who is allowed to make a gift of a body or body part); Organ Transplant: The Process, U.S. DEP'T OF HEALTH & HUMAN SERVS., http://organdonor.gov/about/ organdonationprocess.html (last visited Nov. 23, 2014) (discussing need for legal consent through donation registry, or surrogate permission from next of kin). 2015]1 JOURNAL OF HEALTH & BIOMEDICAL LAW 319 members.53 For all face transplants performed to date, consent has been obtained from a surrogate decision maker.5 4

A new policy promulgated by the Organ Procurement and Transplantation Network (hereinafter "OPTN") prevents general donor consent from sufficing in cases of VCA donation.55

This new policy dictates that the donor must have either explicitly consented to VCA transplant during his lifetime or, if the donor did not explicitly refuse VCA donation, then his surrogate decision maker (e.g., agent, spouse, or family member) must provide consent before procurement can take place.5 6 As aforementioned, it is likely

53 See UNIF. ANATOMICAL GIFT ACT § 9(a) (2006) (specifying classes and corresponding priority of appropriate donors, absent decedent's prior gift consent or refusal). 54 See Cleveland and Boston Experiences, supra note 47 (stating next-of-kin consent for face transplant is required notwithstanding donor's state registry designation). Facial allograft donation is more scarce compared to solid organ donation due to the intensified strict matching requirements and the difficulty in obtaining consent by the next of kin. Id. at 462e. Consent may only be obtained from next of kin, as required by the organ procurement organization, for a facial allograft donation. Id. This type of donation is much more scarce due to the apparent facial disfigurement, despite reconstruction, of the donor. Id. The process for facial allograft consent begins with organ procurement organization representatives evaluate and attempt to match a potential donor's criteria to a recipient in need of a facial allograft donation. Id. at 464e. The organ procurement organization representatives may then request the facial donation. Id. If consent is given by the next of kin, the representatives contact the face transplant institutional surgeon and provides donor information including a photograph and, if possible, an on-site evaluation. Cleveland and Boston Experiences, supra note 47. If the lead surgeon determines that the donation is suitable, a face transplant team is then sent out to retrieve the donation. Id ss See James B. Alcorn, Important Polig Notice. Changes to OPTN Bylaws and Policiesfrom actions at June Board of Directors Meeting, UNITED NETWORK FOR ORGAN SHARING (July 1, 2014), http://optn. transplant.hrsa.gov/ContentDocuments/OPTNPolicyNotice-07-01-2014.pdf. Changes to the OPTN policy and bylaws include new language about VCA donation consent: "Recovery of vascularized composite allografts for transplant must be specically authorized from individual(s) authorizing donation whether that be the donor or a surrogate donation decision-maker consistent with applicable state law. The specific authorization for VCA must be documented by the host OPO." Id. (emphasis added). To increase organ donation and improve the organ donation process, Congress passed the National Organ Transplant Act in 1984. History & NOTA, U.S. DEP'T OF HEALTH & HUMAN SERVS., http://optn.transplant.hrsa.gov/governance/ about-the-optn/history-nota/ (last visited Nov. 17, 2014). The act created the Organ Procurement and Transplantation Network ("OPTN"), which is a "unique public-private partnership that links all professionals involved in the U.S. donation and transplantation system." About the OPTN, U.S. DEP'T OF HEALTH & HUMAN SERvS., http://optn.transplant.hrsa.gov/ governance/ about-the-optn/ (last visited Nov. 17, 2014). OPTN oversees a nation-wide organ- matching registry. History & NOTA, supra. The OPTN's mission is to "to increase the number of and access to transplants, improve survival rates after transplantation, and to promote patient safety and efficient management of the system." About the OPTNv, supra. 56 See OPTN, Policies, supra note 4, at 28 (explaining the authorization requirement for transplantation of vascularized composite allografts). 320 JOURNAL OF HEALTH & BIOMEDICAL LAW [VOL. X NO. 3 that most donors do not know that face and hand transplants are possible." As such, they are highly unlikely to specifically consent to, or refuse, VCA transplants during their lives. Thus, VCA consent almost always falls to surrogate decision makers, which necessarily excludes the potential individual donor, who arguably should have control over the donation of his own face and hands.

Three possible consequences of current VCA donation consent practice that warrant further analysis will be discussed here. A primary concern is that VCA donors most likely do not have adequate understanding of, or control over, what could happen to their faces, hands, and other VCAs like larynges, penises, and uteri, after death. It is possible that hands and faces will be procured from deceased people who would not have wished to donate these parts. It is likely that deceased donors from whom hands and faces have already been procured and transplanted were unaware of this possible outcome for their bodies.58 A second concern centers on misinformation as donors become aware of VCAs through sensationalist media reports, which could potentially cause apprehension about these donations.59 It is possible that objective information would create a higher level of acceptance. 60 Unfortunately, such media misinformation and sensationalism could potentially cause donors to explicitly opt out of VCA donation, which would lead to lower availability of donated hands and faces. A third possible consequence of current VCA consent practice is that concerns about donating hands and faces might cause individuals to refuse all organ donations. Because most donation registration systems do not provide easy methods for opting out of donating specific organs, and none currently provide clear methods for opting out of VCAs, people who do not want to donate their hands and faces but do want to donate other organs could easily think they have to refuse all donation to protect their wishes against VCAs.

Regardless of the ethics of VCA donation, the harm in losing life-saving solid organ donations, when registered donor rates are still low in proportion to the United

57 See McDiarmid, supra note 5, at 667 (explaining that most donors do not understand they are registering to donate their hands and faces). 58 See Siemionow and Gordon, supra note 16, at 1291 (noting comprehensive guidelines for donor facial allograft procurement and the initial review process); Pomahac, supra note 41, at 736-37 (describing identity and faces). 59 See McDiarmid, supra note 5, at 669 (discussing consent process and misinformation surrounding VCA transplants). See generally Agich, supra note 11, at 133 (discussing psychological considerations relevant to face transplants). 60 See Report to the Board of Directors, OPTN/UNOS Vascularized Composite Allograft Transplantation Committee, (une 23-24, 2014), http://optn.transplant.hrsa.gov/converge/ CommitteeReports/board-mainVascularizedCompositeAllograftTransplantation 7_2 2014_16 4.pdf (addressing possible solutions regarding donor concerns about VCA donation). 2015]1 JOURNAL OF HEALTH & BIOMEDICAL LAW 321

States population, could be substantial. 61 To prevent drops in solid organ donation and to empower donors to decide whether to include VCAs as part of their organ gift, donors must be informed about the existence and nature of VCAs, and they must be given clear registration options for and against VCAs.

IV. The Uniform Anatomical Gift Act and State Donation Registries

The Uniform Anatomical Gift Act (hereinafter "UAGA") exists to ensure that donor organs are procured ethically by codifying the rights and duties of potential donors, as well as the rights and duties of organ transplant research and education professionals. 62 The UAGA creates the option to register as a donor while applying for a driver's license 63 and sets standards that states must follow if they choose to establish donor registries, which is now a significant method by which donors make their wishes known. 64 As such, the UAGA is the most appropriate means to ensure donor consent with regard to the emerging world of VCAs. Currently, neither the UAGA standards nor any donor registry make any mention of VCAs.

In 2006, the UAGA was amended to protect donor decisions from family

61 See P.L. Abt et al., Challenges to Research and Innovation to Optimize Deceased Donor Organpuality and Quantity, 13 AM. J. TRANSPLANTATION 1400, 1400 (2013). See also ORGAN PROCUREMENT TRANSPLANTATION NETWORK, http://optn.transplant.hrsa.gov (last visited Nov. 24, 2014). Today, there are 123,892 people in need of a lifesaving organ transplant and 9,512 current donors. Id. 62 UNIF. ANATOMICAL GIFT ACT, §§ 1-27 (amended 2006). See Kristi L. Kielhorn, Note, Giving Life After Death: The 2006 Revision of the Uniform Anatomical Gift Act, 56 DRAKE L. REv. 809, 811 (2008) (outlining the 2006 revised act's main goals). See also Revised Anatomical Gfft Act 2006, UNIF. LAW COMM'N, (2009), http://www.uniformlaws.org/shared/docs/anatonical-gift/uaga final aug09.pdf (explaining intentions of UAGA). In the act's prefatory note, it states three main purposes: First, the [Act] is designed to encourage the making of anatomical gifts. Second, the [Act] is designed to honor and respect the autonomy interest of individuals to make or not to make an anatomical gift of their body or parts. Third, the [Act] preserves the current anatomical gift system founded upon altruism by requiring. a positive affirmation of an intent to make a gift and prohibiting the sale and purchase of organs. Id. at 2. 63 UAGA § 5(a)(1) (describing options for donor registration). 64 See National Donor Designation Report Card, DONATE LIFE AMERICA (2014), http://donate life.net/wp-content/uploads/2014/06/Report-Card-2014-44222-Final.pdf [hereinafter "Report Card"]. "In 2013, 43 percent of recovered organ donors, 49 percent of recovered tissue donors and 52 percent of recovered eye donors were authorized through state donor registries." Id. at 1. 322 JOURNAL OF HEALTH & BIOMEDICAL LAW [VOL. X NO. 3 refusals and to allow donors to specify their intentions by enrolling in a registry. 65 The 2006 amendment of the UAGA has been adopted by forty-six states and Washington, D.C.;66 Pennsylvania has introduced legislation to adopt it this year. 67 The registry component of the 2006 amendment was clearly successful: all states now have donor registries and as of 2013, 117 million U.S. citizens were registered donors, and 43 percent of recovered organ donors were authorized through state registries. 68

While registries are now a valuable method for signing people up, the UAGA does not require registries to provide specific organ and tissue options or information about organ transplants. 69 It specifies that states may contract for the creation of a state registry and, if they do, the registry must: (1) allow donors to include on the registry a statement or symbol indicating his gift, amendment, or revocation; and (2) provide Organ Procurement Organizations (hereinafter "OPOs") with 24-hour access to the registry. 70 States may - and many do - provide more nuanced registration options, but none provide explicit information or options regarding donation pertaining to face, limb, and other VCAs.71

State registries run the gamut on this concern, from providing a list of organs for which one can opt out of to only allowing registrants to check an all-or-nothing box.72 For example, Washington, D.C. allows registrants to opt out from among a long list of solid organs, eye parts, and tissues. 73 A D.C. registrant also can choose whether

65 See UAGA § 8 (2009) (noting that donor's decision to make an anatomical gift "is to be honored and implemented"). The Uniform Anatomical Gift Act "for the first time, allowed persons to indicate their intention to donate by enrolling in a donor registry.. . . It also included important provisions that more strongly prevented others from overriding a person's decision to be a donor." James J. Wynn & Charles E. Alexander, Increasing OTgan Donation and Transplantation: The U.S. Expenence Over the Past Decade, 24 TRANSPLANT INT'L 324, 329 (2010). 66 Anatomical Gift Act, UNIFORM LAW COMMISSION (2006), http://uniformlaws.org/Act.aspx? title=Anatomical+Gift+Act+(2006) (last visited Nov. 24, 2014). 67 S. B. 850, GEN. ASSEiB., REG. SESS. (PA 2013), available at http://www.legis.state.pa.us/ CFDOCS/Legis/PN/Public/btCheck.cfm?txtType=PDF&sessYr=2013&sesslnd=O&billBody= S&billTyp= B&billNbr=0850&pn=2275. 68 Report Card, supra note 64, at 1 (noting statistics regarding donors and donor registries). 69 See generally UAGA 5 11(f), supra note 50 (lacking guidance pertaining to registry requirements to provide organ donation information). 2 70 UAGA § 0(c) (outlining recommended requirements for state created donor registries). 71 See sources cited infra notes 72-79 (listing examples of nuanced registry requirements). But see sources cited infra notes 81-82 (listing states with no information or options regarding VCAs). 72 See, e.g., DONATE LIFE DC, https://www.donatelifedc.org/register/ (last visited Nov. 19, 2014) (presenting that D.C. allows donation limitation selected by the donor). But see DONATE LIFE ARKANSAS, http://www.donatelifearkansas.org/Registration.aspx (last visited Nov. 19, 2014) (allowing donor to opt out of organs, tissue, and eyes, but no specific organs). 7 DONATE LIFE DC, https://www.donatelifedc.org/register/ (last visited Nov. 19, 2014) 2015] JOURNAL OF HEALTH & BIOMEDICAL LAW 323

to opt out of donating for education, therapy, transplant, or research purposes. 74 North Carolina, allows registrants to opt in from a slightly shorter list of solid organs, eye parts, and tissues, but does not allow one to choose among donation purposes.75 Nevada provides an option where one can manually write which organs they do not want to donate. 76 Arkansas is more restrictive, only allowing the registrant to opt out of whole categories: one can only give all solid organs or none, all tissues or none, or all eye parts or none.77 No state registries provide VCAs among their opt-in or opt-out options, and none presently list them as included among what can be donated.78 While registries like Nevada's provide less sophisticated options than registries like D.C.'s, the former actually provides a mechanism for opting out of VCAs (via entering manually) whereas the latter does not.79 Even the ability to manually opt-out of VCAs is irrelevant until potential donors know that hands and faces are among potential donated body parts. Since driver's license donor registration schemes are less detailed than the online databases, it is almost certain that VCA options are equally absent from DMN registrations.80 It is safe to say that no registry provides a sufficiently clear and easy method for selecting for, against, or among VCAs.

As aforementioned, newly passed OPTN policy requires explicit consent to VCA donation prior to procurement for transplant, even though VCAs are not explicitly described as options in DMV or state donation registries. 8' Many registration methods

(providing specific options list for what organs and parts of organs may be donated). 74 Id 7s DONATE LIFE NORTH CAROLINA, http://www.donatelifenc.org/register (last visited Oct. 22, 2014) (enabling registrants to become a donor through online portal). 76 DONATE LIFE NEVADA, https://www.donoregistry.org/Register/nv/en (last visited Oct. 22, 2014) (enabling registrants to become a donor through online portal). 77 DONATE LIFE ARKANSAS, http://www.donatelifearkansas.org/RegisterationConsentAR.aspx (last visited Oct. 22, 2014) (enabling registrants to become a donor through online portal). 78 See, e.g., L. Cendales et al., Implementation of Vascularized Composite Allografts in the United States: Recommendations From the ASTS VCA Ad Hoc Committee and the Executive Committee, 11 AM. J. TRANSPLANTATION 1, 13-17 (2010) (discussing need for creating VCA standards to promote consistence, safety, and professionalism). 79 See supra note 76 (discussing Nevada's policies regarding donating VCAs); supra note 72-74 (discussing D.C.'s policies regarding donating VCAs). s0 See, e.g., Massachusetts Department of Transportation, Registry of Motor Vehicles, CLASS D, M, OR D/M LICENSE AND ID CARD APPLICATION, SECTION C (last visited Nov 20, 2014), http://www.massrmv.com/rmv/forms/21042.pdf (providing Yes or No general option for becoming organ donor, without providing organ opt-in or opt-out options). 81See generally, UNOS RecruitingMembers for New OPTN VCA Committee, TRANSPLANT PRO (July 5, 2013), http://transplantpro.org/vascular-composite-allografts-to-be-added-to-optn-final-rule-no ta-organ-definitions/. OPTN is hiring experts to staff a new VCA organ donation committee, because HHS has announced VCAs will be added to the definition of organs covered by the OPTN Final Rule. Id. 324 JOURNAL OF HEALTH & BIOMEDICAL LAW [VOL. X NO. 3 do not even provide options to select or refuse specific organs. 82 Most people do not realize they can provide a legally binding intent to donate upon death simply by writing down their preferred donor organs for preferred purposes, and signing the document. 83 Instead, an increasing number of people specify their donative intent via the DMV and state registries. 84 As long as donors remain unaware of VCAs during their lives and registries do not provide specific VCA opt-in and opt-out options, faces and hands will continue to be procured by surrogate consent. While surrogate consent is morally preferable over no consent, laws like the UAGA exist to protect donors' njghts, not the rights of donors' family members. If we believe that individuals should have control over their own bodies after death, then current VCA donation consent procedures are insufficient.

V. Recommendations for UAGA Amendment

In order to ensure better-informed VCA donation and to minimize the potential for negative backlash concerning the procurement of tissues for VCA transplants, the UAGA ought to be revised. The law should reflect the inclusion of VCAs as organs for donation purposes to prevent public misunderstanding and to prevent negative impact on total organ donation rates. Many people are unaware of the practice, much less the benefits, of face and hand donation." Most potential donors are unaware that they must explicitly opt in or opt out to exercise control over the donation of their faces and hands.86 While educational campaigns promoting solid organ donation have brought

82 Se, e.g, North Dakota Donor Registry, NORTH DAKOTA DEPARTMENT OF TRANSPORTATION, https://apps.nd.gov/dot/dts/dlos/donorChange.htm (last visited Nov. 20, 2014) (allowing driver to opt-in or out of organ donation but without option to select organs); South Dakota Donor RegistU, SOUTH DAKOTA DEPARTMENT OF PUBLIC SAFETY, https://apps.sd.gov/ ps09onlinerenewal/organdonorupdate.aspx (last visited Nov. 20, 2014) (not allowing driver the option to select specific organs for donation); Massachusetts Class D, M, or D/M License and ID CardApplication, MASSACHUSETTS REGISTRY OF MOTOR VEHICLEs, http://www.massrmv.com/ rmv/forms/21042.pdf (last visited Nov. 20, 2014) (providing only the option to be a donor generally, not for specific organs). 83 See generally, Jacqueline Zee, The Revised Uniform Anatomical GJtAct: Bringing "Cakfornia Donation Law up to Contemporar Medical,Legal, and BioethicalPractices", 39 McGEORGE L. REv. 529, 539, n.85 (2008) (explaining that donors can specify how much of their bodies they want to donate). 84 See Report Card, supra note 64, at 1 (discussing percentage of recovered organ donations authorized through state donor registries). 85 See McDiarmid, supra note 5, at 667-68 (discussing patient considerations for hand and face transplantation). See also Kimberly Leonard, Face Transplants Raise New Challenges and Opportunities, U.S. NEWS & WORLD REPORT, Nov. 21, 2014, available at http://health.usnews.com/health- news/hospital-of-tomorrow/articles/2014/11/21/face-transplants-raise-new-challenges-and- opportunities (discussing the procedure for educating potential patients and donors regarding both face and hand transplants). 86 See U.S. NEWS & WORLD REPORT, supra note 85 (explaining that organ donors cannot 2015]1 JOURNAL OF HEALTH & BIOMEDICAL LAW 325 kidney, heart, and liver donations to the attention of the general public, there is far less awareness of the emerging field of VCAs.87

The knowledge void surrounding VCA donation practices is incompatible with the United States Department of Health and Human Service's decision to include VCAs as organs for purposes of donation and transplant.88 This decision is more problematic than previous additions to the list of body parts that are legally considered organs,89 because of the stronger ways in which identity is associated with faces, hands and other composite organs.90 Potential donors must be given information to understand why these body parts are appropriately considered organs and to understand how these gifts can improve the lives of recipients. Individual donors should have the capacity to decide the moral weight they attribute to hands and faces by having clear methods to opt in or out of donating these body parts. Because VCA information and options are absent from DMV and state registries,91 OPTN's new policy of requiring specific consent to VCA transplants will almost always default to post-mortem surrogate consent.92

As such, the UAGA should be modified to require the following:

(1) State donor registries and driver's license applications must provide specific organ donation options that reflect the current list of all organs that might be eligible for donation. This list must include a category for Vascularized Composite Allografts, and these options must include face transplants and hand transplants explicitly.

(2) Brief descriptions may be provided next to each category of organ options.

specifically opt for face or hand transplantation). 87 See McDiarmid supra note 5, at 665 (discussing lack of awareness about the emerging field of VCAs compared to other organ donations). 88 See Transplant Living, supra note 4 (discussing U.S. Dep't HHS announcement that effective July 3, 2014 VCAs are transplantable organs). 89 See Alexandra Glazier, Legal and Regulatoy Aspects of Face Donation and Traniplantation,in THE KNow-How OF FACE TRANSPLANTATION 261, 263 (Maria Z. Siemionow ed., 2011). The list of body parts considered "organs" under the National Organ Transplant Act originally included heart, lung, liver, kidney, and pancreas; the Secretary of the U.S. Department of Health and Human Services was given the power to add new organs as necessary. Id. at 263. Additions made prior to VCAs include islet cells and the small intestine. Id. 90 See Furr et al., supra note 34 (discussing how a person's emotional expressions are most prominently displayed through their face); Hartman, supra note 18 (discussing a person's self identification through facial features and how others perceive and remember someone). 91See supra, notes 70-78 and accompanying text (illuminating a lack of uniformity among state DMVs and donor registries regarding what organs are donatable). 92 See Cleveland and Boston Experiences, supra note 47 (discussing how donors' families are approached for consent where actual donor consent is absent). 326 JOURNAL OF HEALTH & BIOMEDICAL LAW [VOL. X NO. 3

Next to the category for Vascularized Composite Allografts, the registration form should include one to two sentences describing that these transplants will only be used for treatment of limb loss or severe facial trauma. The description should also include that the recipient will not look just like the donor, and while not life-saving, these transplants can dramatically improve the quality of the recipient's life.

VI. Conclusion

If the UAGA is not modified to reflect the fact that faces and hands are among each donor's registered gift, then donors will continue to lack actual control over their bodies after death. This control should be proportionate to the emotional and symbolic significance of the hands and face. As the public comes to realize that their hands and faces can be donated, there will likely be a variety of reactions. Some decisions might not be affected, while some will want to change their donor designations. If the primary methods for donor registration do not easily allow people to opt out of VCAs, then many people might choose not to donate any organs at all. With over 100,000 people on various organ waiting lists in the United States,93 this consequence would be unacceptable. Due to cultural attitudes and symbolic differences, it is difficult to tell whether national sentiment will embrace VCAs as it did solid organs. Current policies do little to aid the donor's choice of organ donation options that coincide with personal values. By implementing the modifications suggested, informed choice will be ensured while minimizing a potentially significant deleterious impact on total organ donation rates.

93 See Organ Procurement and TransplantationNetwork, U.S. DEP'T OF HEALTH & HUMAN SERVS., http://optn.transplant.hrsa.gov/ (last visited Nov. 21, 2014) (stating there are over 100,000 total candidates on organ transplant waitlist).