American Journal of Law & Medicine

Face value: challenges of transplant technology.

I. INTRODUCTION

What is the value of a human face? It is a vexing question with no simple answer. The question, however, is no longer fanciful given the trajectory of biomedical science that simultaneously captures our imagination and challenges our essence. Essential to each of us and to the whole of humanity, the face is primal in its individuated image and identity. It is intrinsically connected with us in a way that defied question--until now, given the highly anticipated next step in transplant science and technology, facial transplantation. This Article examines the value of the face in this context, along with a range of related issues.

The human face has rich significance. It is intrinsic and instrumental to the ontology of a person. 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. (1) The face, our most distinguishing feature, dictates how others perceive, identify, think about, and remember us. Through visage we not only project ourselves to others, but we perceive ourselves through interaction with others. From this self-perception, we derive personal meaning and worth. Although self-perception evolves with our own life trajectory, the human face remains a quintessence to personal image--an image once thought so innate that its value was scarcely considered, let alone questioned. Yet, in an age where scientific advances increasingly manipulate the human face, shaping cultural perceptions about what constitutes beauty and its quest, (2) and surgical skill is relied on to "correct and cure" the visible effects of aging, (3) the value of the human face merits inquiry. Facial transplant, on the cusp of surgical realization, (4) compels that inquiry.

Facial transplant, as an extension of transplant science and surgery, suggests a revolutionary approach. (5) The mere idea that surgeons could remove a deceased person's face for use by someone else in order to improve aesthetic and functional results from severe burn or trauma engenders responses ranging from thoughtful contemplation to intuitive reactions. Thoughtful contemplation focuses on the complex moral, ethical, and policy issues on the one hand. On the other, the significance of a face intuitively relates to personhood, resulting in a bifurcated reaction. First, surgery to transplant human facial tissue to another creates visceral discomfort because of a face's personal nature as essential to individuality and identity. Removal suggests disposability, thereby coarsening an intimate component of each of us. Given the deeper meaning denoted by the concept of harvesting a human face in marked contrast to solid organ procurement, the language used to describe the procedure contributes to--and to some degree shapes--this response. Describing the surgical procedure with clarity and precision, such as "removing facial tissue for surgical graft to another" as compared to "removing a human face for use by another," tends to reduce repulsive and outlandish images that could compromise in-depth examination these issues deserve. (6) Second, the promise of facial transplant to restore faces of persons disfigured by burn or disease is inestimable due, in part, to intuitive and universal understanding about the value of the human face. (7) The physical and psychological relief available to those disfigured (8) is powerful given social norms that herald biomedical science and technology to advance both quality and quantity of human life. (9)

Beyond basic questions, such as how this surgical procedure might be accomplished and for whom it would--and should--be available, concerns that merit a cautious approach abound. (10) Sensational rhetoric will inevitably dramatize this surgical advance as a ghastly procedure leading to the horror of human face trafficking. (11) As science and surgery continue to disengage our parts from our person, conceptualizing those parts as "property" or a "marketable commodity" raises considerable concern. (12) Meaning of the human face and the extent to which it should be surgically removed and manipulated, even for therapeutic purpose, is yet another. Cast somewhat differently, what is at stake for each and all of us? As with biomedical and scientific innovation generally, do we owe any obligation to future generations to undertake a more contemplative approach toward a surgical prospect that--literally and figuratively--could change the face of humanity?

Phenomenal strides in transplant science and surgery that afford the prospect of facial transplant compel consideration of these issues. This Article advances and clarifies understanding about these issues. It does not, however, argue against progress in facial transplant; only that progress should proceed carefully, accompanied by serious consideration of the implications for the persons involved, for biomedical science and society, for legal policy and public oversight, and for humanity. Foreseeing benefit to "patients with conditions that cannot be adequately addressed by conventional reconstructive surgery procedures," surgeons and scientists view facial transplant as a promising medical solution to relieve the suffering of a small and select group of patients. (13) There is no reason to believe, based on surgical and scientific indicators, progress toward facial transplant will not continue. (14) But, its mere prospect compels us to examine a range of issues and reasons for concern related to its progress.

This Article unravels and casts light on emerging issues that accompany transplantation progress: how should this innovative surgery be conceptualized and what would it entail; for whom would it be available (and deemed appropriate); what would be the physical and psychological risks to recipients; how might it impact recipients and families, as well as donors and families; what should informed decision-making about receiving and donating involve; how should society influence and respond to strides in biomedical technology that transcend a core of human existence; and whether legal policy and regulatory oversight are desirable. Section II conceptualizes and details the facial transplant. Section III explores the procedure's benefits and risks to recipients. Any potential success in facial transplant depends on donative tissue and related issues, which Section IV discusses in relation to the donor and decision-making process. Section V examines the relationship between society and biomedical progress, along with issues relevant to legal policy development and regulatory oversight. The value of the human face figures prominently in this examination. A clear understanding of the range of considerations related to facial transplant can frame issues in a way that draws an incisive, rather than intuitive, response. In so doing, this Article seeks to evoke independent and imaginative thinking about the prospect of this innovative surgery, especially the deeper inquiry it invites about the value of the human face.

II. CONCEPTUALIZING FACIAL TRANSPLANT

Viewed as the next step in the substantial strides yielded by composite tissue allotransplantation, (15) including hand transplant, (16) surgeons and scientists envisage facial transplant as a revolutionary advance in treating persons who are severely disfigured by burns and traumatic deformities. (17) Current surgical techniques in facial reconstruction use the person's own skin for grafting, which ultimately produces an asymmetric patchwork of tissue and non-pliable scars. The grafted tissue--a thin piece of skin--has no intrinsic blood supply and relies on the ingrowth of vessels from the recipient's underlying facial muscles, thus restricting movement and resulting in a mask-like appearance. (18) From a surgical standpoint, facial transplant offers an attractive option. (19) By transferring an entire facial skinflap--including the vascular supply--from one person to another, surgeons envision optimal outcome with muscle function that most people take for granted, such as breathing, chewing, and closing eyes to sleep. (20)

This functional improvement should also coincide with improved aesthetic appearance, including a return of facial expression as the donor tissue melds to the recipient's bone structure, muscular sutures heal, and nerves regenerate. (21) This fuctional and aesthetic improvement requires fewer surgeries than incremental autologous tissue grafting. A facial tissue transplant is estimated to be a twenty-four hour procedure; twelve hours for facial-flap removal from the donor and twelve hours for surgical attachment to the recipient. (22) Thus, scientists and surgeons urge its progress as an "alternative for patients with complex facial deformities that cannot be corrected by application of currently available reconstructive procedures." (23)

As conceptually attractive as this advance may be for repairing a disfigured face, it is not certain that the projected therapeutic benefits will materialize. (24) Although success in experimental facial transplant on mice, dogs, and cadavers has reportedly been achieved, (25) results for humans are highly unpredictable and speculative at best. The nature and extent of unknown risks make conceptualization of the procedure germane not only to biomedical science and its relationship with society, (26) but also to law and regulatory policy. (27) It is unclear, for instance, whether this procedure should be conceived as transplant and, thus, fall within regulatory guidelines for procurement and allocation under the federal National Organ Transplantation Act ("NOTA") (28) and the Uniform Anatomical Gift Act ("UAGA") (29) adopted in some form by every state. (30) While tissue allograft resembles transplant in terms of requiring surgical transfer of human tissue from a donor to recipient, it does not conform to a traditional transplant model because the primary skill involved relates to plastic and reconstructive surgery both at the procurement and allograft stages. (31)

Conceptualizing facial transplant as the next step in reconstructive surgery seems a more precise fit. (32) This conceptualization, however, leaves oversight largely to professional responsibility and surgical ethics, offering few restraints on moving forward with the procedure in spite of unknown and unpredictable risks. (33) As discussed in the next section, these risks are not insubstantial. (34) Thus, providing the procedure to prospective patients who are already vulnerable from scarring and suffering may be morally ambiguous at best, (35) with the inherent potential for prearranged agendas that exploit disfigured persons to engage in coveted leading-edge research. The latter brings with it concerns commensurate with using human subjects for experimental trials, (36) although it is also not clear whether this procedure would fall within federal regulatory oversight for experimentation that is more risk averse than inclined. (37) Whether providing this procedure and permitting a person to undergo it can be ethically defended, not simply asserted, is certainly worth contemplating given the unresolved risks to recipients.

III. RECIPIENT RISK/BENEFIT RATIO

A. PREDICTABLE AND UNPREDICTABLE RISKS

Beyond the question of whether facial tissue transplant can be done lies the question of whether it should be done. Long-term consequences are starkly unknown, such as genetic tissue mutation or psychological impact. Additionally, "short"-term risks, such as infection and additional scarring, are enduring and possibly permanent. Conceding untold results and risks for humans, including tissue rejection by the host immune system and long-term healing, (38) research scientists and surgeons nonetheless forecast transferring transplantable tissue to a recipient, including some "architecture" from a donor face, such as shape and proportion of brow lines, noses, cheekbones, and mouth formation. (39) They maintain, however, that a facial transplant recipient would look neither like one's former self nor the donor; rather, a recipient would adopt altogether a new facial identity. (40) This phenomenon is described as a "third identity" (41)--contrary to sensationalized reports of "wearing a dead person's face." (42)

Lessening concern of a ghoulish transfer of facial identity, however, does not reduce considerable risk to the recipient. Physicians predict an exacerbated immune rejection problem due to the fragile, sensitive areas of the human face, necessitating a lifetime of large dosages of immunosuppressant drugs (43) with multiple associated risks, including malignancy, diabetes, hypertension, kidney disease, and hematological toxicity. (44) Facial tissue rejection may necessitate new immunosuppressive protocols and particularized clinical trials. (45)

Lifetime compliance with a higher dosage regimen of current immunosuppressants demands vigilant post-transplant care. (46) In the event of noncompliance with prescribed immunosuppressive drugs, the effect and extent of facial tissue rejection remain unknown. A failure of the procedure could further compromise the patient's appearance and his ability to adjust. (47) The added trauma and disfigurement to the recipient raise concerns as to the remedy, and the extent to which it is even possible. (48) Whether and under what conditions such risk exposure is justified require extensive deliberation. For example, would that remedy entail another facial transplant? Put differently, could the transplant recipient be worse off than having not undergone the facial transplant?

Biomedical principles of beneficence and nonmaleficence must not be overlooked in facial transplant. As a life-enhancing option to permanent disfigurement, facial transplant commands a sustained, cautious approach, rather than improvised response, given the untold degree of risk to the recipient, who is a vulnerable patient with hope of improved aesthetic and functional results. (49) Mere promise of aesthetic and functional improvement does not reasonably--or morally--justify maiming or harming a person. (50) Proceeding surgically with a shortsighted view of risk undermines professional responsibility of nonmaleficence by magnifying potential harm, both physically and psychologically, to patients with facial disfigurement that is not absolved by promises for improved aesthetic and function. (51) By bringing sharply into focus the enormity of risks, contemporary customs and commitments that maintain virtues in medical practice impact how persons suffering with facial disfigurement should be engaged in decision-making about facial transplantation. (52) Simply put, predictable and unpredictable risks should be discussed. (53)

Any moral justification for offering persons a procedure replete with risk segues into the decision-making process. This issue begs the question whether informed voluntary consent is possible--let alone acceptable--in this context. (54) In fact, any concept of informed decision-making in this context seems counterintuitive; a facially-disfigured person's euphoric anticipation, accompanied by rekindled hope and expectation, militate against voluntary decision-making, an element crucial to the legal and bioethical contours of informed medical decision-making. (55) Informed consent is steeped in principled views of individual autonomy and personal well-being that rely, in important part, on voluntary decision-making (i.e., that personal choice should result from one's own values unencumbered by coercive influences). (56) Because the face closely correlates with identity in a constitutive sense, the degree of invasiveness to bodily integrity alone suggests an inherently suspect decision.

Consent, essential to respecting personal free will while protecting those most vulnerable, may be unattainable as a product of inherent coercion, especially in the context of experimental surgical procedures. (57) For example, the "nothing-to-lose" attitude of persons willing to undergo unproven, radical procedures in the hope of recovery arguably weakens one's capacity to decide whether to undergo risks in a way that distinguishes virtues in the practice of medicine. (58) These virtues, in turn, have shaped legally relevant judgment applied to biomedical contexts for remedying lack of informed consent, (59) as well as rejecting claims that consent was informed and provided voluntarily in certain circumstances. (60) Transplant surgeon Christiaan Barnard once described this attitude as believing that you can swim across a crocodile infested body of water, if what brought you to the edge was being chased by a lion; the latter, of course, making all the difference in considering the plunge into crocodile-infested water. (61)

Yet, as with pioneering patients in organ transplantation, it is equally plausible to think that the values of autonomy and well-being underlying informed consent are not necessarily opposed in this context. Altruistic willingness to forge ahead despite unknown risks in pursuit of meaning in suffering, which includes participation in a procedure for the long-term betterment of others similarly afflicted, along with meaning derived from being a part of something beyond oneself, cannot be devalued as

contributing to personal welfare. Nor should contributing to the collective welfare be dismissed in relation to personal well-being, as thousands of people live longer, fuller lives as beneficiaries of the autonomous judgment of patient pioneers who chose to undergo unrealized risks, including death, in transplant surgery. A plausible explanation for risk-inclined choices by individuals in transplant, as in other areas of experimental procedures, is by reference to social norms that sanction risk-taking behavior. (62)

Whether persons with severe facial disfigurement ought to be begrudged a decision to participate in a risk-inclined procedure that could temper their (and others') psychological pain and physical suffering is certainly worth considering. Distinct, though closely allied, considerations are the sense of isolation perceived by someone with facial disfigurement who should not be denied respite, (63) as well as an opportunity to reclaim an appearance that affords a psychological sense of "normalcy" through which self may be conveyed (64) and regain social inclusion by participating in a surgical breakthrough. (65) The ability to participate in a surgical breakthrough on the chance of realized benefit for self and others may enable persons with facial disfigurement to surmount these emotional hurdles. In this regard, the psychological predicament brought on by facial disfigurement may not be all that different from that experienced by those afflicted with incurable disease who choose to participate (and are permitted to do so) in pioneering research. (66)

The psychological component accompanying facial disfigurement seems profound and complicated, impacting self-perception that is, to some degree, shaped by others' perception. (67) Assuming available donor tissue and bearable costs, (68) multifactorial concerns exist with respect to screening and selecting prospective recipients. In short, who would determine prospective candidates for facial transplant and by what selection determinants? (69) A key selection determinant should be the psychological state of the prospective candidate, as the ability to cope with stressors and intensive post-surgical care influences transplant success and survival. (70) Facial transplant intensifies these stressors. Ongoing compliance with complex immunosuppressive protocols and psychological integration of a new identity with self-image will be difficult, as was the trauma that accompanied disfigurement and exacerbated vulnerability. (71)

The degree of facial disfigurement is another major determinant. Presently, facial transplant is intended as a procedure for persons severely disfigured by burn, accident, or disease. Yet, what about people suffering from a vascular birthmark or a botched face-lift? While research suggests that a universal concept of facial disfigurement exists and may be reliably measured, these findings further suggest that degrees of disfigurement are still influenced by systematic and subjective elements. (72) Disfigurement--as with defect or deformity--is a social construction shaped by cultural forces, and, thus, subjective elements shaped by social and cultural norms accompany any determination of facial disfigurement within purview of the procedure and resource allocation.

Certainly, the specter looms that someone facially disfigured as a result of choosing to undergo numerous cosmetic surgeries may want to undergo facial transplant. Whether personal choice that proves detrimental, such as undergoing, for pure vanity, what ultimately proves to be deforming plastic surgery, constitutes a legitimate factor when considering prospective candidates who are facially disfigured warrants exploration. (73) This point reflects the debate about whether alcoholism should factor into consideration among candidates competing for a lifesaving liver transplant. (74) In contrast to facial transplant, however, liver transplant is more difficult from an ethical standpoint given that resource allocation is life-saving; whereas, facial transplant would be life-enhancing and other options exist, such as reconstructive surgery using one's own skin for grafting.

Whether the prospective transplant recipient should have input concerning donor tissue likewise merits consideration. Unlike receipt of a solid organ that is internal to the body, receiving donor tissue for face transplant involves an external, visual component for the recipient and for others to whom the recipient attaches importance. Given that the human face is both intrinsic and instrumental to selfhood, the recipient arguably should have a say about the donor tissue, which could also advantage the recipient psychologically. While normative and empirical study is needed to inform this point, it is worth pressing in light of one prospective transplant patient's desire "to see the person [donor] before ... transplant," with the ability to reject use of that donor's facial tissue "if I didn't like [the] appearance, or I had a bad feeling about [her]." (75) Such sentiment from someone afflicted with facial disfigurement--for whom this surgical advance is intended--suggests the legitimacy of considering whether, in contrast to organ transplant, a prospective facial transplant recipient should be more directly involved in the donor selection process. To that end, consideration of race, color, and gender for tissue antigen match becomes relevant, (76) as well as the ability to view the donor and retain a sort of veto control that has not only a psychological dimension for the recipient, but for the donor and his/her family as well. (77) While the prospect of viewing and selecting donors for their tissue further conjures images of facial tissue banks, as with sperm and ova, that prospect is unlikely due mostly to demand exceeding supply given the nature of donation.

The psychological impact on the recipient following the procedure is also germane. It is at least imaginable that a recipient of a facial transplant could experience psychological shock equal to or exceeding that of the original disfigurement. The nature of the psychological shock carries implications apart from difficulty in adjustment and adaptability, such as a recipient perceiving a stranger's presence engrafted onto one's self and, thus, feeling foreign to one's self or even violated. (78) This could impact self-relationship and interpersonal relationships with others, entailing the need for sustained psychological support as part of follow-up care. For example, studies with solid organ transplant recipients report "that some people feel that their personality, behavior or attitude have changed because they have received in their body an organ from another individual." (79)

Equally imaginable, however, is that a recipient could experience a Kafkaesque metamorphosis, (80) underscoring the spirit of human resilience and adaptability to change in perceived identity. Indeed, a recipient of a successful surgery conceivably could be overcome with an elated sense that the result exceeds expectation, which restores a sense of physical self once thought irretrievably lost. The vast psychological implications for a facial transplant recipient present difficult, unresolved normative and empirical questions that should be studied to inform a risk-to-benefit ratio critical to the decision-making process. (81) As with other advances on the biomedical science axis, however, this examination will most likely necessitate study with actual recipients who are willing to undergo facial transplant despite extensive risk. …

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