[*PG465]ORGAN HARVESTS FROM THE LEGALLY INCOMPETENT: AN ARGUMENT AGAINST COMPELLED ALTRUISM
Abstract: Organ transplants may offer the best hope of long term survival for individuals afflicted with certain cancers or other debilitating diseases. The hope that a transplant may inspire in an organ recipient should not, however, be the determinative factor when the proposed source of the organ is incompetent. Competent adults are not compelled to act altruistically by undergoing a surgical invasion for the benefit of third parties. Children and mentally incompetent adults should likewise be protected from such compelled altruism. Case by case adjudication of petitions to harvest organs from incompetents are inevitably driven by a concern for the recipient and an unwarranted deference to parental authority, and not by concerns for the autonomy and well being of the incompetent donor.. This Note argues that organ harvests from legal incompetents should be statutorily prohibited.
It is axiomatic that advances in medical science which hold the promise of resolving questions of life and death tend to create ethical dilemmas of right and wrong.1 Organ transplants are one such advance. An organ transplant often offers the best hope of long term survival from certain cancers and other debilitating diseases.2 But that best hope cannot be realized unless a close, genetically matched organ can be quickly obtained. There are two sources of organs: those that are donated and those that are harvested. Organs are “donated” by competent adults who voluntarily and altruistically consent to give what is sometimes called, “the greatest gift.”3 Organs are “harvested” from cadavers or living related children and mentally disabled adults—individuals who are unable to give a competent, valid con[*PG466]sent.4 It is this latter method of obtaining organs that poses the ethical dilemma: may the altruistic gift of an organ be compelled from a legal incompetent?5 Absent exigent circumstances, medical personnel must obtain parental or guardian consent before providing necessary medical treatment to children and mentally disabled adults.6 The requirement that parental consent be obtained is based on the principle that children and mentally disabled adults lack the maturity or ability to understand the consequences of accepting or foregoing treatment.7 Parental consent is considered sufficient to authorize necessary medical treatment on the grounds that parents are in the best position to determine and act on behalf of their children’s best interests.8 For those same reasons, when medical treatment is unnecessary, but will improve the health of the child or mentally disabled adult, parental consent is again both necessary and sufficient.9
The sufficiency of a parent or guardian’s consent is less clear, however, when the treatment is medically unnecessary and the beneficiary of the treatment is a third party10—such is the case when a [*PG467]parent or guardian wishes to harvest an organ from a child or ward to save a sibling.11 In this context, the interests of the incompetent no longer drive the medical treatment.12 Rather, the incompetent’s interests must be reconciled with or subsumed beneath the family and doctor’s understandable desire to save the sibling.13 Yet, despite the absence of medical necessity or medical benefit, when confronted with petitions to harvest organs from incompetents, courts generally retreat behind presumptions of parental beneficence and give these procedures the blessing of judicial approval.14
In contrast, competent adults are under no compulsion to submit to organ harvests for the benefit of third parties.15 Adults may decline to be tested for initial compatibility, and if compatible, may stop the process at any time.16 Both the common law doctrine of informed [*PG468]consent and the rejection of a general duty to rescue support the competent adult’s decision to assist or ignore the needs of third parties.17 Similarly, competent adults may prohibit post-mortem harvests of their organs by making those wishes known by an advance directive.18
Society has long accepted and expected that in certain contexts the law will treat the legally competent differently from the legally incompetent.19 Contract and labor laws, for example, prevent the latter group from forming contracts or working in particular industries.20 These distinctions are justified, in part, by society’s interest in protecting those who are unable to protect themselves because of age or mental infirmity.21 Nevertheless, when courts and legislatures rush to defend legally competent donors from compelled harvests but defer to third-party interests when faced with legally incompetent donors, the differences take on a disturbing texture.22
[*PG469] This Note will argue that organ harvests from children and mentally disabled adults should be categorically prohibited.23 Case-by-case adjudications of petitions to harvest organs from these individuals inevitably turn on a balance of the relative benefits and harms arising from organ transplants.24 The cost-benefit analysis is flawed for two reasons.25 First, courts refuse such a balance of benefits and harms when asked to compel competent adults to donate organs.26 Second, the information on which the cost-benefit analysis is based is both incomplete and incorrect.27 Moreover, using the most vulnerable members of society to shield us from the pain of a loved one’s illness or imminent death is unfair.28 It forces the child or mentally disabled adult to take on life and death burdens for which they are wholly unprepared and exposes them to harms from which they are wholly unprotected.29 Only legislation which requires that individuals be fully competent to give an informed, meaningful consent before being candidates for live organ donations can alleviate the inherent dangers of adjudicating these issues case-by-case.30
Part I of this Note provides an overview of organ transplantation and discusses the psychological effects and family dynamics that color the experience of donors and recipients. This foundation is necessary to critically examine the speculative psychological benefits courts rely on when they authorize organ harvests from children and the mentally disabled.31 Part II surveys the major case law in this area and notes a recent case which goes beyond the mere authorization to har[*PG470]vest an organ and actually discusses the recognition of a right to another’s organ.32 Part II also examines the legal standards to which courts explicitly turn when deciding the cases. Finally, Part III analyzes the cost-benefit analysis underlying the court decisions that have authorized organ harvest petitions in light of the research presented in Part I. Part III then discusses why the judicial standards are unworkable and suggests legislative action as the way to ensure uniform and proper outcomes.
When faced with a child in need of an organ, parents and doctors often look to siblings because they tend to be more suitable donors than other family members or unrelated donors.33 Sometimes, desperate parents will even conceive additional children solely to provide the older sibling with a donor.34 As Part II will show, it is settled that a court has no authority to compel a competent adult to donate an organ.35 In contrast, courts adopt a posture deferential to the needs of [*PG471]third parties when the organ source is not legally competent, and they generally find authority to permit such harvests.36 The emerging rationale among opinions authorizing harvests and commentators supporting the practice is that organ harvests psychologically benefit the volunteered donor.37 These opinions argue that permitting the harvest ensures the child or mentally disabled individual’s psychological well-being by preventing the death of a sibling and by conferring on him or her the benefits associated with altruistic acts.38
Setting aside the question of whether speculative psychological benefits constitute a sufficient justification for this sort of bodily intrusion, these rationales assume away several important questions which this Note will attempt to answer:39 (1) Are different transplant procedures sufficiently similar to warrant generalizing the experience of one type of donor to another?;40 (2) Is the child or mentally disabled adult protected from psychological harm when his or her sibling survives?;41 and (3)Can data regarding the experience of adults who volunteer to donate an organ reliably predict the experience of the child or mentally disabled adult who is volunteered?42
There are two obvious differences between a bone marrow and a kidney transplant: First, bone marrow regenerates while a kidney does not; and second, whereas bone marrow is extracted through a thick needle, making it seem analogous to the common experience of donating blood, a kidney transplant requires major surgery.43 These do [*PG472]not, however, constitute the only differences between the two types of transplants.44 The other perhaps more significant differences have less to do with the manner in which the organ is harvested and more to do with the underlying disease which has created the need for the organ in the first place.45 These differences, in turn, materially affect the experience of the donor.
The time frame in which a family must locate a suitable donor and the post-transplant prognosis for the organ recipient, are two such factors that differ dramatically depending on the nature of the disease and that can seriously and adversely affect the donor.46 In terms of the timing of the transplant, options short of a kidney transplant from a living related donor exist for most people in need of a kidney.47 Dialysis, for example, can sustain an individual with no functioning kidney for upwards of twenty-five years, depending on the nature and severity of the underlying disease.48 Organs from cadavers have become more available as awareness about the great need for organs and comfort with the idea of donating has grown.49 Emotion[*PG473]ally related donors, such as spouses and friends, are also becoming more acceptable sources of kidneys.50 Until recently, doctors were reluctant to mine this particular source of organs because of compatibility concerns; however, developments in immunosuppressive pharmacology have reduced the need for the type of close genetic match that was formerly thought necessary.51 These options materially affect the experience of the donor by reducing the pressure a family may feel to come up with an immediate donor, and by easing the psychological pressure on the individual family member that he or she is the patient’s only hope.52
A bone marrow transplant, on the other hand, may be the patient’s best hope for survival.53 Furthermore, the window of opportunity for performing a bone marrow transplant is generally quite [*PG474]small.54 The urgency of the situation makes it more likely that a bone marrow donor, unlike a kidney donor, will feel that the life or death of the ill family member is in his or her hands.55 For children and mentally disabled adults, the urgency has the added effect of encouraging hasty court proceedings with little adversarial content.56 Moreover, a failed bone marrow transplant exacts a higher price than a failed kidney transplant because death from the complications associated with a bone marrow transplant tends to be more agonizing than death from the underlying disease.57 The fact that kidney and bone marrow transplants may yield vastly different results is a critical difference between the two types of transplants because, as discussed in the next section, the psychological well-being of the donor is often tightly bound to the ongoing health and well-being of the recipient.58
Courts that have authorized organ harvests have assumed a cause and effect relationship between a transplant and the prevention of psychological harm.59 In other words, courts assume that permitting the transplant will ensure the survival of the sibling, which in turn will [*PG475]protect the child or mentally disabled donor from psychological harm, or alternatively, will provide the donor with a psychological benefit.60 Undoubtedly, some transplants do achieve their purposes with no measurable ill effects on the donor.61 Research indicates, however, that this best outcome may be far less common than people realize.62
Transplant operations often create a unique link between the donor of an organ and its recipient.63 Sometimes, this link opens the door to greater closeness and a sense of mutual support.64 The link, however, also tends to bind the pair in such a way that the donor’s psychological well-being and the quality of the donor-recipient relationship becomes dependent on the recipient’s health and well-being.65 One team of researchers at the University of California, Los Angeles (UCLA) studied these various effects.66 In one study, the UCLA researchers found a high, direct correlation between a recipient’s perception of his or her health, social functioning and overall well-being and the donor’s perception of their relationship.67 They suggested that “physical or psychosocial deterioration in [bone marrow transplant] recipients may result in significant psychological distress in the donor.”68
Unfortunately, significant physical or psychosocial “deterioration” is common among bone marrow recipients because bone marrow transplants involve a high risk of severe, short-term illness and an of[*PG476]ten low rate of long-term survival.69 The statistics are grim: the one-year survival rate averages only fifty to sixty percent, and among those recipients who survive, approximately twenty-five percent experience significant health problems.70 For many recipients, significant health problems manifest in the form of Graft Versus Host Disease (GVHD), a disease caused by the transplant itself.71 Bone marrow produces white blood cells; white cells form the core of our immune system. An essential result of a bone marrow transplant, therefore, is that the immune system of the donor is transplanted into the recipient:72
[J]ust as a host’s immune system will [treat] a transplanted liver or heart as foreign tissue and react against it, a transplanted immune system will [treat the] host’s entire body as foreign tissue and react against it. . . . [A]cute GVHD manifests itself in one of three ways: a skin rash that can progress to blistering and ulceration, liver damage that can progress to liver failure, and damage to the intestinal lining that can lead to massive gastrointestinal bleeding. Chronic GVHD, which . . . can either follow an episode of acute GVHD or arise spontaneously, has symptoms that resemble those of autoimmune diseases like lupus and scleroderma, including severe rashes, thickening and scarring of the skin, and limitation of joint motion.73
GVHD is the single greatest threat to a bone marrow recipient’s health following a transplant.74 In addition to the medical complications caused by GVHD, the drugs used to treat GVHD are strongly associated with a wide spectrum of psychiatric and physical syndromes, including renal failure, delirium, anorexia, chronic sleep [*PG477]disorders and gonadal dysfunction.75 Furthermore, even patients who suffer from no GVHD complications have shown neurological damage from the regular course of cancer treatment alone.76 Although researchers continue to search for a way to prevent GVHD, one researcher noted that while GVHD often kills its victims, those who survive the most severe bouts of the syndrome seem to have a greater chance of long-term survival.77
To date, only one study has focused particularly on the experience of minors from whom bone marrow was harvested for the benefit of a sibling.78 Researchers at the University of California, San Francisco found that fully one-third of children whose siblings were bone marrow recipients suffered from signs of post traumatic stress syndrome, even if the transplant had taken place years earlier.79 The children were depressed, complained of recurrent nightmares, had overdeveloped fears of hospitals and needles and had a constant sense of dread that the experience might be repeated.80 This was true for both siblings who donated and siblings who did not donate.81 The sib[*PG478]lings who donated, however, were more withdrawn, anxious, depressed and had a lower sense of self-esteem, which the researchers attributed to a guilty fear that their tissue might not be “good enough.”82 Other researchers have similarly warned that if the child turns out to be an incompatible donor or the transplant is unsuccessful, “[t]he . . . guilt which may follow in the wake of [that] failure could be transferred to the donor child with untoward effects, either in early bonding or later, as the child grows up under the shadow of having failed in an important task.”83 Moreover, negative reactions to these procedures are not restricted to young donors. Despite the fact that a bone marrow harvest is less complicated surgically, the percentage of adult bone marrow and kidney donors reporting negative reactions to the donation experience was roughly the same.84 Nor are difficulties in the ongoing relationships between donors and recipients limited to those cases in which the recipient fared poorly or died.85 Contrary to the expectation that a good medical result for the recipient will lead to a good psychological result for the donor and the relationship, some donor-recipient pairs become estranged even when the recipient is a long-term disease-free survivor.86 This finding led the UCLA researchers to express concern that the approximately ten to twenty percent of the adult donors in one study who exhibited adverse psychological consequences was only the “tip of the iceberg,” because those donor-recipient pairs who had become estranged declined to participate in the study at all.87 Lastly, they cautioned that donors as a class may show a “relatively high incidence of pathological grief reactions” if their recipients do not survive.88
[*PG479] Kidney transplants similarly bind the fate and well-being of donors and recipients. While short-term health and long-term survival for the kidney recipient are decidedly better than for the bone marrow recipient, kidney recipients have exhibited disturbing psychological effects as a result of the transplant, and this in turn affects the donor and the donor-recipient relationship.89 The psychological effects observed in kidney recipients include delusions that the transplant will lead to a full and complete recovery and a refusal to acknowledge the true risks involved. In addition, recipients may become depressed or suffer from the psychotic belief that they have taken on the qualities of the donor through the transplanted organ.90 More commonly, kidney recipients manifest a chronic fear and worry that they are living on stolen time.91 Finally, recipients of kidneys donated by relatives have reported that they suffer from guilt and a sense of having an unpayable debt hanging over their heads, an emotional residue that is uncommon for individuals who receive kidneys from cadavers.92
For the kidney donor, the physical toll of the harvesting procedure is much greater than that exacted on the bone marrow donor from the bone marrow extraction procedure. A kidney harvest involves major surgery and results in the permanent loss of an organ as well as a scar running from mid-back to mid-abdomen.93 Moreover, because the rejection rate for even closely matched kidneys can run as high as twenty percent, kidney donors may experience not only a sympathetic or guilt reaction, but may feel that they underwent major surgery and gave up a kidney for nothing.94
[*PG480] The physical and psychological differences between bone marrow and kidney transplants make it difficult to speak of organ transplants as an undistinguished class of procedures.95 Differences in the underlying diseases and in the transplant procedures lead to different stresses and different types of risks. Similarly, the methods by which individuals become donors vary to such a degree that to speak of organ donors as an undistinguished class of individuals is misleading.96 Just as the bone marrow donor may be more likely to experience psychological trauma than the kidney donor, the donor who is volunteered may be more likely to experience psychological or physical trauma than the donor who steps forward as a mature and competent volunteer.97
Adults become live donors when they register with organ procurement organizations or agree to donate in response to a family member’s acute need.98 The context in which an adult donates and the factors leading to the decision to donate vary. In turn, context and motivating factors may determine the donor’s experience of the donation itself.99 The set of adult organ donors can therefore be broken down into three distinct groups: (1) the altruistic, anonymous adult donor; (2) the family member who decides to donate in response to internal pressures; and (3) the family member who decides to donate in response to external pressures.100 Because minors and mentally disabled adults cannot volunteer but must be volunteered by parents or guardians, they make up a fourth, closed class of compelled donors.101
[*PG481] Adults who decide to participate in organ procurement organizations do so voluntarily out of a sense of charity and social duty.102 These donors generally remain anonymous, as do the identities of the recipients.103 Much has been written about the satisfaction and heightened self-esteem these donors experience when they learn that their organ or tissue may have given someone a fighting chance to survive.104 It may be, however, that it is the anonymity and voluntariness peculiar to this type of organ donation that permits the donor to experience the euphoria of having done something utterly selfless and good.105
Family members who decide to donate organs when illness strikes close to home fall into two primary groups: those who donate in response to a sense of moral obligation and those who donate in response to pressure from families or medical personnel.106 Generally, [*PG482]when adults decide to donate in response to a sense of moral obligation—that is, on the basis of an internal motivation—they experience their participation as voluntary and generally feel good about their decision in both the short-term and the long-term.107 While the ill family member’s need for the organ triggers the donor’s feeling of moral obligation, the donation itself is driven by the need to satisfy the feeling of obligation.108 The donor’s participation does not, ultimately, depend on the outcome of the transplant nor the risks involved.109 A clear and developed sense of one’s moral obligation, therefore, seems to reduce the likelihood that a donor will be ambivalent about giving up the organ, and may in turn immunize him from the psychological after-effects noted above.110
The second group of family members decide to donate in response to pressure from family or from medical personnel.111 This pressure can range from subtle situational pressures, to messages as blatant as: “if you don’t donate, s/he will die.”112 Whereas moral obligation can properly be called an internal motivation, these pressures are external and can be quite intense.113 More than half of the kidney [*PG483]donors in one study group were subject to pressure that researchers felt had a “compulsory quality.”114 Even when the pressure is not overt, the threat of family sanctions may be coercive to the point where family members feel that they truly have no choice.115 The face of death, however, only rarely changes existing and entrenched family dynamics.116 A hard but undeniable truth is that family members may not be loved or valued equally.117 Sibling rivalry, favoritism and other pre-illness conflicts affect the way families manage the stress of the illness, as well as the process by which donors may be selected.118 Moreover, these factors color the long term experience of the donor and may even affect the medical success of the transplant.119
[*PG484] Notwithstanding the internal and external pressures on family members to volunteer, adults may decide that for whatever reason, they are unwilling to step forward.120 Among the immediate family, studies have found that adult siblings of ill family members are the least willing to donate while parents and children are the most willing.121 Nor is it uncommon for an adult family member to publicly manifest a willingness to be a donor but, in the privacy of a medical consultation, indicate by actions or words that he or she does not actually wish to donate.122 In response, medical personnel have been known to manufacture medical excuses that provide unwilling donors a graceful way out and that protect them from further family pressure.123
Minors and mentally disabled adults make up the final set of donors, but rather than volunteering to donate, these donors are volunteered by a parent or guardian.124 The question for medical personnel, then, turns not on the child or mentally disabled adult’s willingness to donate, but on the parent or guardian’s legal authority to consent to the donation on behalf of the child or ward.125 This is the way that judges and courts most commonly become involved in the process of obtaining organs from live donors.
Uncertainty about a parent or guardian’s right to consent to medically unnecessary organ harvests from children and mentally disabled adults has led doctors and hospitals to require court orders to preempt any question of liability.126 State courts are the current forum for adjudicating such petitions.127 There are currently no statutes authorizing or compelling organ harvests from compatible incompetents.128 In their absence, courts have historically applied the “best interest” or “substituted judgment” standard.129 Regardless of which standard is applied, a cost-benefit analysis underlies most judicial reasoning, balancing the benevolent desire of the family to save the life of an ill family member against the known physical risks and theoretical psychological benefits that might accrue to the organ donor.130
The judicial standards to which courts turn when faced with a petition to harvest organs from legal incompetents have roots that pre-date the organ procurement dilemma by hundreds of years.131 The best interest standard, for example, can be traced back to the [*PG486]dramatic social, philosophical and economic shifts of the 18th and 19th centuries, which in turn led to changes in the way that children were perceived and the way that childhood was understood.132 Where children were once treated as simply small adults, the view emerged that children should be safeguarded from many of the ills of adulthood and an increasingly industrialized society.133 The best interest standard developed as a way for the legal system to accommodate this emerging view and today it remains the governing principle for adjudicating civil cases involving minors.134 Courts generally invoke this standard under the parens patria power of the state--the state’s responsibility and authority to protect society’s most vulnerable members.135
The substituted judgment doctrine, on the other hand, was originally applied in cases involving the property or estate of a now incompetent but formerly competent individual.136 In its present form, the standard requires that decisions be made not by substituting a court or guardian’s values, but rather in accordance with the values or wishes the individual expressed while still competent.137 Whereas [*PG487]the best interest standard might properly be described as paternalistic, the substituted judgement standard, in theory, protects the individual’s right to make decisions for him or herself.138 The doctrine has since grown beyond its roots in property law to encompass non-therapeutic medical decisions made on behalf of incompetents.139 Furthermore, the doctrine has been applied to individuals who were never legally competent, a practice which exposes the values of the true decisionmaker: the court or guardian.140
A survey of reported cases helps to establish the outer limits to which courts will go to find authorization for an organ harvest and to highlight the judicial reasoning that supports imposing a global prohibition on harvests from minors and mentally disabled adults.141
In 1969, the Kentucky Court of Appeals decided Strunk v. Strunk, the first reported organ transplant case.142 Strunk expanded the scope of the substituted judgment doctrine, holding that a mother’s consent was sufficient to authorize the removal of one of her mentally retarded son’s kidneys.143 The recipient, Tommy, was twenty-eight years old and suffering from a fatal kidney disease; the donor, Jerry, was twenty-seven years old, with a mental age of six.144 Each member of the family was tested for compatibility, but Jerry was the only potential match.145 In order to reach its holding that the substituted judgement [*PG488]standard was the correct standard to apply, the Strunk court analogized the transfer of an incompetent’s organ to the transfer of an incompetent’s real or personal property.146 Strunk is widely recognized as the first United States case to extend this doctrine beyond questions of property to medical decisions made on behalf of an incompetent when the incompetent’s own health was not threatened. Strunk also extended the doctrine to situations involving individuals who had no history of ever having been legally competent.147
Strunk set the unfortunate precedent of invoking the substituted judgment doctrine while relying on a determination that the transplant was in the incompetent brother’s best interest, a determination that was framed in terms of a cost-benefit analysis.148 Finding that the benefit (saving his brother) outweighed the cost (losing his kidney), the court reasoned that the transplant was in Jerry’s best interest, and therefore, within the power of the court to authorize.149
The Strunk dissent, however, noted that the extension of the substituted judgment doctrine to medically unnecessary procedures was not only without precedent, but inconsistent with existing state case law and contrary to the scope of existing state statutes.150 Additionally, although sympathetic to the terrible choices facing the family, the dissent voiced the concern that taking a body part from one who could not fully understand or consent brought to mind the types of human experiments conducted during World War II.151
After Strunk, courts were divided regarding the proper scope and application of the substituted judgment doctrine.152 Some courts rejected Strunk’s reasoning; others embraced and extended it.153 In 1972, in Hart v. Brown, the Connecticut Superior Court followed in Strunk’s footsteps by holding that a court of equity had the power to authorize a kidney transplant from a seven year-old to her twin sis[*PG489]ter.154 Hart similarly relied on the substituted judgment doctrine for its equity powers, but engaged in a cost-benefit analysis to determine whether or not the transplant was in the child-donor’s best interests.155
Transplants between identical twins enjoy the greatest long-term success, because the genetic similarities reduce the possibility that the organ will be rejected.156 A transplant from any other individual requires that the recipient be given immunosuppressive drugs to inhibit the body’s natural defenses.157 Suppressing the immune system puts the recipient at risk of infection and other diseases, and the drugs themselves have well-documented short and long-term side effects.158 The Hart decision turned almost exclusively on the severity of potential complications the recipient twin might endure if a kidney other then her identical twin’s were used.159 The court went so far as to characterize any outcome that would require resort to immunosuppressive drugs as “cruel and inhuman.”160 As a “close, independent and objective investigation of [the parents’] motivation” indicated that the decision was morally sound in the eyes of the community, the court held that permitting the parents to substitute their consent for the consent of their minor child was the only just result.161
A few years after Strunk was decided, two courts explicitly rejected its extension of the substituted judgment doctrine to petitions involving organ harvests from individuals who have never been competent. Instead, the courts applied the best interest standard.162 Both the Lou[*PG490]isiana Court of Appeals, in In re Richardson, and the Wisconsin Supreme Court, in In re Pescinski, denied the guardians’ petitions to authorize kidney harvests from incompetent siblings.163 These courts reasoned that when a transplant is for the sole benefit of a third party, it is, by definition, not in the best interest of the incompetent individual.164
Pescinski and Richardson distinguished Strunk, noting that guardianship laws in neither state could support the procedural or substantive posture of that decision.165 Rather, the laws in both states empowered guardians merely to protect the estate of an incompetent, not to make independent decisions regarding the disposition or betterment of the estate. The Pescinski and Richardson courts reasoned that such unqualified protection of a property right could not be greater than the protection of a minor or incompetent’s “right to be free from bodily intrusion.”166 Richardson held that because the organ harvest was for the sole benefit of the older sibling, the transplant was not in the best interest of the retarded brother and therefore, the court denied the petition.167 The Pescinski court denied the petition on similar grounds: holding that absent the consent of the incompetent individual, neither the court nor the guardian had the authority to consent to an organ transplant that would benefit only a third party.168
The Pescinski dissent sharply criticized the majority for its unwillingness to adopt the substituted judgment doctrine.169 The dissenting judge reasoned that where an individual is incompetent and unable to speak for himself, it is appropriate for a court of equity to substitute its own judgment and do for the incompetent what the court is certain the incompetent would do for himself if he were able.170 In the [*PG491]dissent’s view, the substituted judgment standard weighs the harms and benefits that might accrue to both siblings from prohibiting or permitting the transplant.171 The dissent argued that in this case, prohibiting the transplant harmed the incompetent brother because it condemned him to be forever “a receiver, a taker, but never a giver.”172 The Pescinski and Richardson majorities, on the other hand, refrained from balancing harms and benefits.173 Rather, once the courts found that no benefit would flow to the incompetent donors, the courts’ analysis was complete.
Courts that adopted Strunk’s explicit substituted judgment reasoning, however, still adhered to its underlying best interests analysis. In 1984, in In re Doe, the New York Supreme Court, Appellate Division, affirmed the trial court’s order authorizing a bone marrow transplant from a forty-three year-old severely retarded adult to his thirty-six year-old leukemic brother.174 As the source of the court’s power to authorize the transplant was grounded in its parens patria power, the court held that it could only authorize such a transplant if it found the transplant to be in the incompetent’s best interests.175 In determining the best interests of the incompetent donor, the trial court did the same type of cost-benefit analysis that the Strunk court used and that the Pescinski dissent advocated, finding that the possible death of the leukemic brother outweighed the possible physiological and psychological harm from the harvest itself.176
In 1990, in Curran v. Bosze, the Supreme Court of Illinois denied a petition to harvest bone marrow from minor twins, and in so doing, dealt directly with the differences between the substituted judgment and best interest standards.177 The father brought a petition on behalf of his twelve year-old son in order to compel the mother of his three year-old illegitimate twins to have them tested for compatibility.178 The [*PG492]facts showed that the twins’ parents had never been married, the twins’ paternity was established by a blood test shortly after birth and the siblings had met on only two occasions.179
In its carefully drafted opinion, Curran rejected the use of the substituted judgement doctrine in adjudicating petitions involving minors and other individuals who had never been legally competent. The court reasoned that it is a competent adult’s “philosophical, religious and moral views, life goals, values about the purpose of life and the way it should be lived, and attitudes toward sickness, medical procedures, suffering and death” to which he or she looks to make important decisions about submitting to or refusing medical treatment.180 Under Curran, where because of age or infirmity an individual has not developed a personal value system, application of the substituted judgment doctrine “undermin[es] the foundation of self-determination and inviolability of the person upon which the right to refuse medical treatment stands” because the decisionmaker must substitute his or her own values for those of the incompetent.181 Curran held that the best interest standard was the proper one to apply in these situations and outlined three factors that courts should consider when determining whether a transplant is in the best interests of the child or ward: (1) the parent must be informed of the risks and benefits of the harvesting procedure; (2) the primary caretaker must be prepared to provide the donor with the necessary emotional support and (3) the relationship between the donor and recipient must be close.182
In determining the best interests of the young twins, Curran heavily relied on testimony that the twins would suffer psychological harm, [*PG493]not from being compelled to donate bone marrow, but rather from undergoing the harvest without the support of their mother.183 The court also relied on psychiatric testimony tending to show that no benefit could be attributed to the twins absent a close relationship with their half-brother.184 Applying the best interests test, the Curran court found that both parents were well-informed about the risks and benefits of the procedure, but questioned the mother’s ability to provide the necessary emotional support because of her objections to the transplant.185 Furthermore, the court found that the relationship between the half-siblings went no deeper than their paternal blood ties.186 Because two of the three factors were unsatisfied, the bone marrow transplant was not in the twins’ best interests, and therefore the court denied the father’s petition.187
Whether courts follow Strunk’s explicit application of the substituted judgment standard or its implicit search for the best interests of the child or ward, petitions to authorize organ harvests from incompetents have been decided on the basis of a cost-benefit analysis.188 Some courts frame the equation exclusively in terms of harm to the donor: will the possible loss of a sibling cause more psychological or physical harm to the donor than the operation itself?189 Other courts have framed the analysis in terms of the benefits that they and the parents hope the incompetent will realize from his or her participation in the transplant.190 Some courts seek to balance the relative [*PG494]harms to which donors and recipients will be subjected, or alternatively, the relative benefits donors and recipients will realize.191
The benefits/harms approach is peculiar to petitions involving minors and mentally disabled adults. Petitions to compel competent adults to undergo medically unnecessary surgical procedures have yielded results similar to the Richardson, Pescinski and Curran line of cases, but the analysis has been markedly different.192
The detailed analyses courts use when deciding whether or not to permit an organ harvest from a minor or incompetent adult stand in striking contrast to the quick and sharply worded dismissal of a similar claim brought against a competent adult.193 For example, in 1978, in McFall v. Shimp, the Pennsylvania District and County court held that a court of equity had no authority to compel a competent adult to submit to a bone marrow transplant.194 The plaintiff in McFall suffered from a rare, and ultimately terminal, bone marrow disease. The defendant, his cousin, had undergone compatibility tests, and although he was a match, he declined to donate.195 The court, in an opinionated and brief decision, took both parties to task.196 Criticizing the plaintiff for advocating such a blatant violation of an individual’s right to bodily integrity, the court warned, “[f]or a society which respects the rights of one individual, to sink its teeth into the jugular vein . . . of one of its members and suck from it sustenance for another member, is revolting to our hard-wrought concepts of jurisprudence.”197 Notwith[*PG495]standing its desire to condemn the defendant’s refusal on moral grounds, the court concluded that under the law, a competent adult could not be forced to submit to a medical procedure for the benefit of a third party.198
This unequivocal protection of a competent individual’s right to bodily integrity despite the needs of a third party has been echoed in the provocative context of the rights of a fetus as against the rights of its mother.199 In 1994, the Appellate Court of Illinois held, in In re Baby Boy Doe, that no balancing test should be used to weigh a viable fetus’s rights against the right of a competent woman to refuse a cesarean section even if honoring the woman’s refusal might harm the fetus.200 The oxygen supply to a thirty-five week old fetus was slowly being cut off as a result of a placental malfunction.201 The obstetrician recommended that labor be induced or a cesarean performed in order to prevent retardation or death.202 The mother refused, in part on religious grounds, stating that her faith in God’s healing powers compelled her to await natural childbirth.203 The court then made three specific findings: (1) the fetus would be viable outside the womb without any medical assistance; (2) the chances that the fetus would survive natural childbirth were close to zero; and (3) the odds of the mother dying from a cesarean section were about one in 10,000.204
The court analogized Baby Boy Doe to cases protecting an individual’s right to refuse medical treatment including life sustaining treatment, the right to bodily integrity and the privilege of not being compelled to undergo medical procedures for the benefit of a third [*PG496]party.205 Adopting the reasoning of other courts confronted with similar disputes, the court found that it was the “woman’s decision, not the fetus’s interest [that was] the only dispositive factor.”206 Citing Curran and Pescinski, the court analogized the invasiveness of a cesarean section to a kidney or bone marrow harvest:
If a sibling cannot be forced to donate bone marrow to save a sibling’s life, if an incompetent brother cannot be forced to donate a kidney to save the life of his dying sister, then surely a mother cannot be forced to undergo a cesarean section to benefit her viable fetus.207
Lastly, the court painted a graphic picture of the way in which compelled medical treatment on a competent adult would need to be carried out, highlighting how alien such a practice is in our society.208 Therefore, the court not only determined that the woman’s fundamental rights to autonomy and bodily integrity should be protected, but that the third party’s interest (in this case, the fetus) should not even be factored into the analysis.209
These recent cases indicate that a competent adult’s right to decline a surgical procedure for the benefit of a third party continues to be entitled to fierce protection. On the other hand, as discussed in the next section, the notion that parents and guardians have the authority to compel a minor or incompetent to undergo a surgical [*PG497]procedure for the benefit of a third party threatens to become a legal presumption.
Law students learn early on about the treacherous slippery slope and its use as a rhetorical weapon to justify a court’s refusal to recognize new rights and privileges. It is unusual, however, to find an opinion that starkly represents the actual slide down that slope.210 In 1997, in Ferrell v. Rosenbaum, the District of Columbia Court of Appeals recognized the right of a leukemic child to have a sibling conceived who might provide her with bone marrow.211 The mother brought suit against her daughter’s geneticist claiming that his failure to timely diagnose the child’s leukemia constituted medical malpractice.212 The mother claimed that by the time the diagnosis was made, she and the father were estranged, and, therefore, the geneticist’s negligence robbed the mother of the opportunity to conceive additional children who might serve as bone marrow donors.213
The court opined that it was the loss of the opportunity to survive (in the form of a potential sibling’s bone marrow), rather than the loss of survival itself, that constituted the alleged harm.214 The court’s analysis of the cause in fact turned on a series of hypotheticals: if the diagnosis had been timely made, and the parents had decided to conceive another child and they had been successful in conceiving a child who was not only a suitable match but who did not suffer from the same genetic defect, then the chances the child would recover from a bone marrow transplant were in the range of seventy-five to eighty percent.215 The court overturned the lower court’s grant of summary [*PG498]judgment for the doctor/defendant, holding that a reasonable jury could find the doctor violated the standard of care, and furthermore, that the misdiagnosis was a substantial factor in the harm visited on the child because it precluded her from her best chance of obtaining a matched sibling donor.216
The dissent argued that whether the father would have been willing to conceive other children was speculative at best, particularly given that the parents had separated when the child was only two years old.217 The mother’s assertion that he would have been willing to conceive additional children or reconcile with the mother lacked any evidentiary support.218 Without that crucial link in the chain, the dissent concluded that the mother could not prove that the geneticist’s negligence was a substantial factor in the alleged harm.219 The majority responded that the father would only have needed to donate sperm; therefore, whether the parents reconciled was irrelevant.220 The court concluded that if a jury found a breach of the standard of care, “that breach was a proximate cause of [the child’s] injury.”221
Ferrell’s alleged right has no precedent in case or statutory law, but does have practical and popular roots.222 Pediatric oncologists and cancer treatment centers have for many years known and approved families’ decisions to conceive children as bone marrow donors.223 [*PG499]The practice came to popular attention in the early 1990s when the Ayala family publicly announced their decision to conceive a donor baby, despite their ages and the need to reverse the father’s vasectomy.224 Their experience drew a great deal of attention and, while ethicists questioned the practice, the popular sentiment was overwhelmingly positive.225 Less well known, however, is the incidence of abortion for fetuses which fail to match or the incidence of adoption for babies conceived as donors.226 The Ferrell decision, therefore, rested on the presumption that parents not only have the authority to harvest bone marrow from a matching sibling, but can freely conceive, abort or put up for adoption children who serve as donors or who fail in their function as organ donor.227
Courts confronted with petitions to compel children and mentally disabled adults to undergo surgical invasions for the benefit of third parties analyze the petitions in terms of costs and benefits.228 Courts confronted with competent adults, on the other hand, have refused this approach on the grounds that it would violate the individual’s right to autonomy and bodily integrity.229 Differences between legally competent and incompetent individuals do not justify the dif[*PG500]ferent analyses.230 Moreover, the information on which the cost and benefit determinations have been based is incorrect, incomplete and hence, misleading.231
Courts authorizing organ harvests from legal incompetents have relied on a number of mistaken and interrelated assumptions: (1) the surgical risks of an organ harvest constitute the only risks; (2) the transplant will ensure the survival of the ill sibling; (3) the survival of the sibling will ensure the integrity and well-being of the sibling relationship and family as a whole; and (4) the donor will benefit psychologically from his or her participation in the process.232 Unfortunately, research indicates that each element of this house-of-cards justification is subject to question.233 For starters, the physical risks of surgery are not the only risks to which donors are exposed.234 In fact, the psychological harm of compelling donation may be grave, the physical benefit to the recipient may be small and the relationship between donor-recipient pairs may be permanently damaged.235
Because courts have ignored or been unaware of the psychological toll of being compelled to donate an organ, judicial assessments of the potential harm have been greatly underestimated. Courts applying a cost-benefit analysis to organ harvest petitions have generally measured the cost to donors in three ways: (1) the risk that death or serious injury will result from the harvest; (2) the temporary or per[*PG501]manent physical changes that the harvest will cause; and (3) the overall level of surgical complication or invasiveness of the procedure.236 By measuring the costs to the incompetent in physical terms, courts have implied that absent a physical harm, there can be no psychological harm.237 Research has shown this to be an incorrect implication.238
As noted in Part I, to date, only one study has focused on the effects of organ harvests on minor sibling-donors—that is, on the psychological effects of being volunteered by one’s parents to donate bone marrow to an ill sibling.239 That study revealed that the young donors were withdrawn, anxious, depressed, had lowered self-esteem and exhibited symptoms of post-traumatic stress disorder.240 Although the body of research into the psychological effects of organ harvests on adult sibling-donors is far from robust, it supplements the little evidence we have regarding incompetent donors. The latter studies reveal that even the most favorable circumstances attending an adult donor’s participation do not necessarily insulate him or her from psychological harm.241 Donors are often plagued by the worry that the donor’s bone marrow will immunologically attack the recipient’s body or that the kidney will be rejected.242 Rather than mark the turning point for patients and families after a prolonged and debilitating illness, the transplant can mark the beginning of a grueling treatment process that leads to a death more agonizing than death from the underlying disease.243 The donor’s guilt from having caused or contributed to that suffering can be great.244 These harms occur among adult sibling donors even when the decision to donate is voluntary, even when there is an established relationship between the donor and recipient and even when the ill family member becomes a long-term, [*PG502]disease-free survivor.245 Favorable circumstances, however, are often absent; pressure to donate can be coercive and family dynamics and agendas often subtly—or overtly—guide selection of the donor.246 As a consequence, the potential for psychological harm rises.247
Perhaps more importantly, evidence that adult related donors suffer psychological harm should sound an alarm for those concerned about the welfare of children and mental incompetents precisely because of key differences between the two sets of people: adults have real world options and internal resources that are simply unavailable to the legal incompetent.248 Being an adult means making choices that are guided by and, in turn, contribute to the development of one’s internal moral compass.249 Furthermore, being an adult means that even if one feels compelled to act, ultimately one chooses to give in to the compulsion.250 Unlike children and mentally disabled adults, adult prospective donors have the maturity and legal standing to decline to be tested for compatibility or to bring the organ procurement process to a halt at any time.251 Ambivalent and fearful, yet psychiatrically stable, adults may even be provided with mock medical reasons to relieve them of further family pressure and excuse them from any familial obligation.252
To the extent that courts adjudicating organ harvest petitions recognize the potential for psychological harm, they answer it by inviting experts to testify.253 Courts hope this testimony will reveal any unseemly intention guiding the parent or guardian’s selection of the [*PG503]particular donor or that it will indicate whether the selected donor runs a particular risk of sustaining psychological harm.254 This evaluation process, however, offers little protection to the average child or mentally disabled adult for two reasons. First, it suggests that only the rare individual, either because of extraordinary circumstances or a predisposition to psychiatric problems, will suffer psychological harm.255 Second, it assumes that a certain level of fear and uncertainty is acceptable—an assumption courts will not make about competent adults.256 Moreover, in the rare circumstance that a child or mentally disabled adult does attempt to say “no” to the harvest, medical personnel and family members treat the incompetent as merely afraid, not unwilling.257 The ambivalent and fearful, yet psychiatrically stable, child or mentally retarded adult will not receive the graceful exit from the process that the competent adult is entitled to. Rather, he or she can expect a sympathetic hand to hold while being put under anesthesia and, perhaps, counseling post-harvest to help integrate the experience of having been compelled to undergo the surgery.258 However, neither the process by which children and mentally disabled adults become donors, nor a post-facto therapeutic Band-Aid can [*PG504]remedy the fundamental wrong of placing these individuals in the role of family rescuer.259
That this complex array of psychological harms has gone largely unnoticed by courts confronted with petitions to harvest organs from legal incompetents is made all the more troubling by the fact that the benefits imputed to the incompetents are entirely psychological.260 Psychological benefits cannot accurately be measured if psychological harms have been omitted from the equation. And, as discussed below, one must question whether courts are correct to impute the psychological benefits of an altruistic adult donor to the incompetent who is compelled to donate an organ.261
As noted above, courts underestimate the costs associated with donating organs by omitting the psychological costs. At the same time, courts inflate the benefits side of the equation by adding theoretical psychological benefits.262 That courts are willing to entertain speculation about psychological benefits is understandable: organ transplants provide no medical benefit to the donor, therefore any benefit would have to be psychological.263 Nevertheless, research does not support the optimism that attends the speculations.264
In every reported case in which an organ transplant has been permitted, courts have relied on the assumption that the compelled donor would realize one of two psychological benefits: the opportunity to maintain a relationship with the recipient-sibling and the psychological benefit of having acted altruistically.265 Taking these [*PG505]benefits in turn, the expectation that the sibling relationship will be unaffected or improved by the transplant may go unmet.266 The link between donors and recipients is such that the donor’s psychological well-being and a continued relationship with the recipient may depend on the recipient’s perception of his or her ongoing well-being and the long-term success of the transplant.267 Aggressive cancer treatments, however, often offer no more than a minimal chance of survival, yet carry a significant risk that the treatment will harm the patient or lead to a painful and protracted death.268 In addition, the treatment can exact a huge financial and emotional toll on the family.269 Therefore, because transplants rarely yield a return to perfect health, the link between donors and recipients created by the transplant can lead to a deterioration in the quality and strength of the ongoing relationship.270 Moreover, the benefits of an enhanced or on-going relationship may not manifest even if the transplant is a medical success.271 If the donor was at all ambivalent about donating, the recipient may forever hold it against him despite the fact that he ultimately came through.272 The recipient’s feelings of debt or guilt from having needed so great a sacrifice from the donor can also create an unbridgeable gap between the two family members.273
Alternatively, courts impute to volunteered children and mentally disabled adults the psychological benefits that may flow to competent adult volunteers.274 Courts and commentators use words like “donation,” “gift” and “altruism” to support this assignment of benefits.275 Neither the language nor the imputed benefits reflect the experience [*PG506]of the legally incompetent individual compelled to undergo a surgical invasion for the benefit of a third party.276 Commentators argue that retaining the language of voluntariness reminds us that parents have beneficent motives when they involve their children in the organ procurement process.277 Compassion for parents, however, is an insufficient justification for employing euphemisms.278 While the term “organ donor” is an efficient catchall phrase for the process by which human organs are obtained for transplantation, in this context, verbal efficiency masks meaningful differences between the affirmative act of giving and the passive experience of having something taken away.279
Concerns about coercive family pressure, physical and psychological harm, the proper respect for individual autonomy and inappropriately imputed psychological benefits are intensified for the child conceived as an organ donor.280 Those who approve of, or who are at least unwilling to criticize these practices argue that questionable, selfish motives often underlie people’s decisions to have a child or terminate a pregnancy.281 If we are not going to police every decision, so the argument goes, then we cannot police any decision.282 But this view glosses over a material difference between conceiving children who may, as individuals, serve their parents’ ends and conceiving [*PG507]children whose body parts may serve their parents’ ends.283 In the former case, the children will inevitably grow into adults and, as adults, will have the autonomy to choose to fulfill or disappoint their parents’ expectations.284 Children conceived as organ donors, on the other hand, are never given the opportunity to break from their parents’ expectations by making their own choices.285 Parity for donation—the act of conceiving a child to produce an organ donor—reflects a dissected view of children that is incompatible with current understandings of the psychological development of identity and the social and legal concepts of individual autonomy.286 Prohibiting harvests from minors and mentally disabled adults is the only way to eliminate the incentive to conceive children to create matching donors.287
When it overturned the lower court’s decision granting summary judgment to the geneticist, Ferrell v. Rosenbaum recognized the legal viability of the mother’s novel claim that medical negligence robbed her of the opportunity to conceive potential bone marrow donor-siblings for her daughter.288 In recognizing the claim, Ferrell took one giant step toward recognizing one individual’s right to claim the organ of another.289 What happens then to the family who refuses to conceive another baby, or the family that refuses to volunteer its other children to be tested for compatibility?290 Might a court find that a parents’ duty to care for an ill child extends to compelling the parents [*PG508]to conceive other children as organ donors?291 Ferrell, the Ayala story and similar news reports transform these extreme hypotheticals into realistic possibilities.292
Adults experience psychic or psychological benefits when they act without any expectation of reward and when they do not bear the burden of the life or death of a loved one.293 Altruistic behavior is made possible by advances through stages of cognitive development.294 Children do not achieve the ability to act altruistically until sometime in early adolescence, and mentally disabled adults may never reach that stage.295 Imputing the psychological benefits of altruistic behavior to individuals who, because of age, cognitive ability and circumstances cannot make altruistic choices, is myopic.296 Whatever lesson the child may learn from being compelled to donate an organ or from being conceived to donate an organ, it surely will not be about the good of giving of oneself utterly and selflessly.297
Adjudicating petitions to harvest organs on a case-by-case basis tempts judges to stretch legal doctrine to the breaking point in order to reach what they hope is the least regrettable decision.298 The heartwrenching issues these petitions involve make this inevitable.299 Commentators have suggested various methods of correcting the inherent dangers of the current system, including adopting stricter, more clearly defined standards, changing the forum in which the petitions are heard and assigning experienced guardians ad litem to all donors.300 None of these proposals, however, goes to the heart of the problem; case-by-case adjudications are inherently flawed because they substitute the consent and judgment of a third-party decisionmaker for the consent and judgment of the individual undergoing the surgical invasion.301 It is immaterial whether that third-party decisionmaker is a judge or a board of impartial experts, whether the decision is made by a state court or an administrative board, or whether more advocates are added to the complicated mix of people already involved in these petition.302 The harm is done when substitute deci[*PG510]sionmakers make the kind of intensely personal and medically unnecessary decision on behalf of an incompetent that few would suggest ought to be made on behalf of a competent individual.303
Criticizing those decisions that reached the wrong result does not get us very far, however. Rather, Curran, the decision that reached the right result after applying a closely tailored best interest analysis, best illuminates the dangers inherent in adjudicating these petitions case-by-case.304 The Curran court denied the father’s petition to harvest bone marrow from his three year-old twins for the benefit of their half-brother.305 The court articulated a three factor test to determine whether the organ harvest was in the best interests of the minor twins.306 Curran’s test focused on the need for the parents’ informed consent to the procedure, their willingness to emotionally support the donor and the closeness of the relationship between the donor and the ill sibling.307
Applying its tailored analysis to the facts before it, the Curran court determined that the harvest was not in the twins’ best interests because the relationship between the twins and their terminally ill half brother was not close, and the custodial parent was unwilling to consent to the harvest and therefore, unable to emotionally support the twins.308 The guidelines the Curran court injected into the for[*PG511]merly ad hoc standard, however, do not provide legal incompetents with any greater protection than they received from courts applying any other standard. This is so because: (1) Curran’s best interest standard relies on the same false assumption, rampant throughout these opinions, that psychological benefits will flow to siblings who have an established relationship and that the relationship will immunize the donors from psychological harm;309 and (2) the “new” standard very much defers to parental authority—in this case, the refusal of one parent to consent on behalf of the children.310 Looked at through this lens, Curran hardly lives up to the ground-breaking, controversial reputation it seems to have developed among commentators.311
Both the straightforward cost-benefit analysis and Curran’s more tailored benefits-only analysis distort the original purpose of the best interest standard.312 Rather than safeguard children from cold, marketplace realities, the analysis permits courts to put the legally incompetent individual’s right to autonomy and bodily integrity on a scale.313 Whereas judicial proceedings offer legal incompetents only minimal protection against being compelled to “act” altruistically, the law and the medical community categorically protect competent adults from that same compulsion.314 Differences between the two groups do not justify such disparity of treatment.315 Ultimately, no judicial standard will lead consistently to the proper result because no standard can account for the fact that children and mentally incom[*PG512]petent adults are not only unable to give a meaningful, fully informed, legally valid “yes,” they are also unable to simply say “no.”316
The presumption that parents and children are not adversaries with disparate interests is deeply rooted in this country’s jurisprudence and legislation, and for good reason.317 The state has an interest in preserving and protecting family autonomy because the family unit is able to fulfill social functions that the state may be unable or less able to fulfill.318 Although parents have a fundamental right to control the environment in which a child grows, that right should not extend to invading one child’s body in the hope that another child might benefit.319 Deference to a parent’s desire and authority merely assumes away the problem of how to adequately protect the disparate interests of all family members when those interests collide.320
The roles that family members play within their small social units have undergone significant shifts in the past thirty years.321 No longer must people silently lose their individuality and autonomy as a neces[*PG513]sary consequence of their family membership.322 Understandings about child development and the abilities of the mentally disabled have undergone a similar change.323 No longer are children viewed as simply miniature-sized adults, nor the mentally disabled viewed as defective human beings.324 Emerging technologies, shifting social demographics, and developments in the social and brain sciences are just some of the factors that have contributed to this evolution of family and society.325 As a society evolves, so must its body of law.
Sometimes, it is the common law that can best reflect and respond to baseline shifts in the social order; at other times legislative action is necessary to adequately articulate newly defined rights and duties and to provide guidance for how to protect and enforce these new rights and duties.326 Previously, children who were otherwise qualified could hold the same jobs as adults, and children as young as twelve could legally marry.327 Today, the age of consent in most states has risen from twelve to eighteen; child labor laws have been passed to keep children out of factories; and although children over fourteen may work, their employment is subject to strict statutory guidelines.328 These laws have restricted children’s participation in adult activities, notwithstanding the family’s social or economic needs which child labor or an early marriage might have satisfied.329
The only solution to this dilemma is legislation which requires that an individual be legally competent to give an informed, valid [*PG514]consent before he or she may be a candidate for organ donation.330 Legislation which prohibits children and mentally disabled adults from being volunteered as donors would also eliminate the incentive parents currently have for conceiving children as donors.331 Furthermore, legislation would effectively halt the slide down the slippery slope threatened by the court’s recognition of the malpractice claim in Ferrell.332 Our legal system should no longer condone compelled organ harvests by resorting to idealized notions of the family and unrealizable expectations of altruistic behavior.333
Children and mentally disabled adults are often volunteered to undergo surgical procedures so that third parties might benefit from their organs, while the legal system staunchly protects the competent adult’s right to opt out of the same procedures.334 These inequitable results are not justified. The notion that parents, guardians and judges adequately protect the child and mentally disabled adult’s best interests when they permit the harvests is not supported by research regarding the adverse psychological effects that flow from organ transplants.335 If the psychological benefits courts and commentators cite are at best speculative when an individual chooses to undergo a surgical invasion, they are impossible to predict when the surgical invasion is compelled. Legislation must be drafted that eliminates volunteered donors from the rolls of donor candidates, because, as long as children and mentally disabled family members are legal organ sources, parents, doctors and judges will be faced with the untenable task of harming one child in the hope that another will be saved.
We live in a remarkable age—neither birthplace nor genetics need be determinative of who we will be or how long we will live. But the same advanced technologies that have the potential to free us from living or dying according to a fixed blueprint also foster the view [*PG515]that children and the mentally disabled are no more than the sum of their body parts. By holding out the elusive promise that death can be cheated and all disease checked, medical technology too often tempts parents and doctors to try to prolong life at all costs—even when it is a child or mentally disabled adult who ends up footing the bill.