Striking a Balance: Can Presumed Donative Consent End the Organ Shortage While Respecting Individual Autonomy?

Striking a Balance: Can Presumed Donative Consent End the Organ Shortage While Respecting Individual Autonomy?

Article | 106 KY. L. J. ONLINE | January 3, 2018

Jennifer L. Henry[1]

Introduction

            At age nineteen, Jessica Danielson was diagnosed with restrictive cardiomyopathy, a disease typically characterized by poor ventricular filling.[2] By age thirty, she lived out her days inside the walls of the Mayo Clinic, not allowed to leave or even be detached from her IV before receiving a liver and heart transplant.[3] Without the transplant, she would almost certainly die from the disease or suffer a heart attack.[4] In June 2014, after waiting over two years, she was fortunate enough to receive the double transplant and return home to Minnesota.[5] Unfortunately, success stories like Jessica’s are all too rare in the United States, where twenty people die while waiting on a life-saving organ transplant each day.[6] Currently, there are nearly 120,000 people on the waiting list.[7]

The basic idea of organ transplantation predates modern medical science by thousands of years. Indian doctors had started to graft skin to repair wounds and burns by 800 B.C.[8] By the early 1900s, organ transplantation science had advanced significantly, beginning to resemble the process used to transplant organs today.[9] In 1905, an Austrian ophthalmologist performed the world’s first successful corneal transplant.[10] A team of surgeons at Boston’s Peter Bent Brigham Hospital performed the first successful kidney transplant in 1954 after a living donor donated his kidney to his identical twin.[11] 1963 marked the first organ recovery from a brain dead donor.[12]> The ability to procure organs from brain dead donors was a huge step forward in transplant science, eventually leading to the creation of organ donor registries in all fifty states.[13]

Deceased donors can donate up to eight life-saving organs: the heart, lungs, kidneys, liver, pancreas, and intestines.[14] The Uniform Determination of Death Act defines death in two ways: (1) irreversible cessation of circulatory and respiratory functions or (2) irreversible cessation of all functions of the brain, including the brain stem.[15] Deceased donors must die under very specific circumstances that cause brain death; if the heart stops beating, blood flow stops and the organs are not preserved.[16]  Most deceased donors are patients who died in the hospital after suffering severe head trauma, an aneurysm, or a stroke.[17]

The nuts and bolts of the organ donation process are complex. After a patient has stopped responding, doctors perform a series of tests to determine if brain death has occurred.[18] Once brain death has been confirmed, the patient remains on artificial life support to ensure blood flow to the organs.[19] Hospitals are required to notify the local Organ Procurement Organization of each patient who has died or is nearing death.[20] After receiving information about the deceased patient, the organ procurement organization decides whether she is a potential candidate for organ donation.[21] If the patient is a potential candidate, a representative from the organ procurement organization comes to the hospital.[22] The representative then checks the organ donor registry to see if the patient was a registered organ donor, and in the event that she was not, the representative seeks authorization for donation from the deceased’s next-of-kin.[23] Upon obtaining authorization from the next-of-kin or confirmation of the patient’s self-designation as an organ donor, the organ removal process begins.[24] The surgical team that removes the organs is never the same team of physicians who treated the patient before death.[25]

Bleak statistics illustrate that the system of organ donation in the United States falls far short of meeting the demand for organs.[26] To become an organ donor in the United States, one must opt into the program; the process for doing so differs from state to state, but usually involves registering with the state’s Department of Motor Vehicles (DMV).[27] The number of registered organ donors varies widely from state to state. For example, in 2012, 80% of Alaskan adults were registered donors, compared to just 12.7% in New York.[28]

The bottom line is that while public opinion toward organ donation is overwhelmingly positive, these sentiments do not translate into taking the affirmative steps necessary to actually become an organ donor. 95% of American adults support organ donation, but only 30 to 50% in any given state are registered organ donors.[29] This disparity demonstrates the continued existence of barriers to donor registration, or at the very least, the inadequacy of our current system.[30] The introduction of new, more effective legislation aimed at alleviating or eliminating the organ shortage crisis in the United States is vital.

Part I: Express Consent Organ Procurement in the United States

A.  The Uniform Anatomical Gift Act

In an attempt to remedy the dire shortage of organs available for transplant, the National Conference of Commissioners on Uniform State Laws adopted the first version of the Uniform Anatomical Gift Act in 1968.[31] The system created under this model law was one based on principles of “encouraged voluntarism.”[32] Under this system, the onus was on the individual to volunteer to donate his or her body parts to persons in need, for medical research, or for specific purposes upon death.[33] Encouraged voluntarism was praised because it “encourage[d] socially desirable virtues such as altruism and benevolence without running the risk of abusing individual rights.”[34]

The UAGA’s purpose is “to allow anyone over the age of eighteen to be able to donate his/her entire body, or any part thereof, for organ donation if he/she has given the requisite written consent.”[35] The Act provides the process by which donors may make an anatomical gift, explains who may receive and make an anatomical gift, and facilitates communication between medical examiners, treating physicians, hospitals, and procurement organizations.[36] The Act was amended in 1987, and most recently in 2006. One of the important revisions to the act was the express prohibition of the sale or purchase of organs for transplantation, reading as follows: “. . .a person that for valuable consideration, knowingly purchases or sells a part for transplantation or therapy if removal of a part from an individual is intended to occur after the individual’s death commits a [felony]. . .”[37] This revision represents the first time such a prohibition was recognized by the Act.[38].

Other amendments to the Act reflect a shift from encouraged voluntarism to systems of routine inquiry or required request. The addition of procedures for routine inquiry was aimed at addressing the failure of medical personnel to request organ donation from the decedent’s next-of-kin.[39] Although the Act requires that the decedent’s express wish to become an organ donor be honored, it has been noted that in practice, “even if the decedent has signed a document of gift, and such a document is on his person at the time of death, hospitals and organ procurement organizations will almost never retrieve organs without the consent of a person in the highest priority class available” (i.e. closest relative).[40] Under routine inquiry, a physician is required to notify the hospital of a potential organ donor.[41] Then, a member of the hospital’s medical staff discusses the option of organ donation with the deceased’s family members.[42]Under the Act, doctors may abstain from discussing with the deceased’s family members if she makes a “subjective judgment that the family is too distraught to be confronted with the inquiry.”[43]

Routine inquiry and required request laws vary from state to state. The most stringent of such laws require hospital personnel to request donation and document the approval or refusal on the death certificate.[44] In contrast, weaker laws require hospitals to develop protocols to ensure that families are informed of their option to donate.[45] Laws requiring medical personnel to act assertively generally have higher success rates.[46]

B. Organ Donation in Kentucky

            Kentucky’s own organ donation law, first codified by statute in 1970, was essentially identical to the 1968 UAGA. The state adopted the 2006 UAGA revisions by amending its own statute in 2010.[47] In Kentucky, six categories of people may make an anatomical gift during the life of the donor: (1) anyone over the age of eighteen, (2) those sixteen or older if applying for a driver’s license, (3) emancipated minors, (4) unemancipated minors whose parent has authorized the gift, (5) any person who has an agent with power of attorney for healthcare, and (6) anyone who is under guardianship.[48] State law makes the process for becoming an organ donor relatively convenient. One may opt into organ donation (1) when applying for a driver’s license (denotation made on driver’s license card), (2) communicate this desire in his or her will, (3) sign a donor card or other record indicating that the donor has made an anatomical gift to be included on a donor registry, the signing of which is witnessed by at least two adults, one of which is disinterested, (4) or during illness or injury of the donor communicate this desire to at least two adults, one of whom is required to be a disinterested witness.[49] Kentucky law does not differ in any substantial way from the model Act

C. Shortcomings of Express Consent

            Although concerted efforts have been made requiring health care providers to actively pursue organ donations, the organ shortage persists, even worsening with time.[50]  There are a number of reasons behind the personal reluctance of individuals to donate organs, including a general propensity to deny mortality, religious beliefs regarding bodily integrity, and general disgust at the idea of organ removal.[51] A 2002 study conducted in Australia illustrated that brain death remains a contentious issue.[52] Many participants indicated that they would never authorize donation of their next-of-kin’s organs if his or her heart were still beating, regardless of confirmation of brain death.[53] Research also indicates that mistrust of medical professionals is also a substantial barrier to organ donation. Brian Quick, a professor at the University of Illinois, explains, “There are a lot of people who subscribe to the belief that if a doctor knows you are a registered donor, they won’t do everything they can to save your life.”[54]

Again, there is the persistent problem that expressing the desire to donate does not always translate into actually registering as an organ donor.[55] Although organ donor registration is a simple, straightforward process in most states, many people who claim to be willing to donate their own organs fail to take the affirmative step of registering to do so.[56]

Part II: Analysis of the Presumed Donative Consent Model

            Many nations around the globe have adopted the “presumed consent” model for organ procurement. As the title suggests, this system “presumes the decedent has consented to the harvest of his or her organs following death unless that decedent has recorded his or her objection to such harvest.[57] Unlike the express consent model in the United States, under which people must affirmatively opt in to organ donation, presumed consent requires those opposed to the donation of their organs upon death to affirmatively opt out of donation. There are various types of presumed consent systems that have found success in a number of countries, including Austria, Singapore, Chile, Wales, France, and Belgium.[58]

Presumed consent proponents argue that not only does the system yield more organs for transplant, but it also places greater value on human life. They argue that by “making the basic presumption one which favors life, and thus putting the burden of objecting upon persons who would deny life to another, the policy of saving human life is given priority.”[59]

A. Presumed Consent in Operation

            The best example of a “pure” presumed consent model is Austria.[60] Austria is the only nation that does not allow next-of-kin the opportunity to object to the donation of the decedent’s organs.[61] “Austrian physicians appear to exercise their discretion granted under the law and do not discuss donation with the family, unless the family raises the issue, or unless the deceased is a minor . . . .”[62] When doctors are unsure whether or not the deceased has objected to organ donation, removal is permitted—they have no duty to search for documents indicating consent or objection.[63] Austrians wishing to object must do so in writing to ensure legal validity, but beyond this vague requirement, legislative specifics are scarce.[64] Austria’s presumed consent model has been an overwhelming success in regards to increasing the number of organs available for transplant. For example, in Austria, there are sixty cadaveric kidneys available per one million people, twice the amount available in the United States.[65]

Wales has more relaxed presumed donative consent laws. The Welsh system, enacted in December 2015, allows family and friends to object if they believe that the deceased would not have consented to donation.[66] Wales has prioritized education efforts, launching campaigns to help people understand their organ donation options.[67]Early statistics show signs of progress: after only six months, of the sixty organs that were transplanted in Wales, thirty-two came from people whose consent had been presumed.[68] The family consent rate increased in Wales by 10%, and the number of living donors has increased by 20% since presumed consent laws took effect.[69]

Singapore has taken a unique approach to presumed donative consent. The Human Organ Transplant Act couples a system of presumed consent with priority allocation measures meant to discourage people from opting out of organ donation.[70] Priority allocation means that if a person objects to donation, he goes to the bottom of the organ transplant list automatically if he were ever to need a life-saving organ.[71] Fear seems to be an effective motivator; since the Act’s passage in 1987, kidney donation has increased by 67%.[72]

B. Observations: Presumed Consent in Practice

            There is no doubt that although presumed consent has not eliminated organ shortages entirely in countries like Singapore, Austria, and Wales, it has increased the number of organ donors and organs available for transplant.[73] Presumed consent seems to be most effective in its purest form, meaning that if a decedent did not opt out during his or her lifetime, family members are not consulted before organs are harvested. However, leaving family members of the deceased out of the process entirely can cause them to feel disrespected, and in turn, can have a negative cumulative effect on public opinion toward presumed consent. It seems as though presumed consent systems are more effective when people are incentivized to not object to organ donation. For instance, although Singapore’s priority allocation law seems harsh, it has produced life-saving results.[74]

Part III: Barriers to Presumed Consent in the United States

            There are currently no states with presumed donative consent laws on the books.[75] There are, however, portions of state laws that resemble presumed consent. Such a provision exists in Kentucky’s version of the Uniform Anatomical Gift Act.[76] This law allows for the removal of “corneas or corneal tissue” so long as an autopsy has been ordered, corneas are suitable for transplant, and no objection from next-of-kin is known.[77] The statute does not require the coroner or medical examiner to inquire into whether the decedent was a registered organ donor, or whether his or her family would expressly consent to such removal.[78] If this law functions effectively, why couldn’t presumed donative consent work on a larger scale?

The answer to this fundamental question lies in public opinion. Legislators in a number of states have proposed presumed donative consent bills, all of which failed quickly after their inception.[79] In 2010, a New York assemblyman authored a presumed consent bill after his daughter’s life was saved after two kidney transplants, reasoning:

We can trust the decency of the American people, but the government needs to come up with a program that lets people express that decency. That’s what’s missing—a connection between the fundamental goodness of the American people and a system that is not producing the organs that save lives.[80]

His bill was met with objection from the United Network for Organ Sharing (UNOS), the organization that facilitates the organ matching and placement process across the nation.[81] UNOS opposes presumed consent because of “inadequate safeguards for protecting the individual autonomy of prospective donors.”[82]

Recently, a presumed consent bill was proposed by a state senator in Connecticut.[83] The chairman of Connecticut’s Republican Party fiercely criticized the proposal, calling it a “fringe, off-topic agenda item.”[84] The bill also met opposition from the Connecticut Nurses Association and the Connecticut Hospital Association, both groups saying that presumed consent raises “complex legal issues.”[85] The Connecticut bill met the same fate as other presumed consent proposals when the legislature’s public health committee declined to move the bill forward.[86]

Presumed consent systems implicate a number of legal and ethical concerns such as individual autonomy, property rights, fear that the reluctant or procrastinating dissenter will not get the chance to express his or her wishes before death, and the loss of the societal benefits that accompany an opt-in system.

A. Presumed Consent as an Unconstitutional Taking

            The Takings Clause of the United States Constitution prevents the government from taking private property from an individual for public use without just compensation.[87] It has been argued that the taking of cadaveric organs without the express consent of the decedent amounts to an unconstitutional taking.[88] In order to be a constitutionally protected property interest worthy of due process protections, there must be a legitimate claim of entitlement to the property.[89] In Moore v. Regents of the University of California, a case regarding the sale of the plaintiff’s biomedical materials without his informed consent, the California Supreme Court held that a conversion cause of action could not lie because persons do not have a property interest in their own body parts.[90]

Courts are split on what kind of property interest, if any, surviving family members have in the decedent’s corpse. The Sixth Circuit’s decision in Brotherton v. Cleveland is one of few to find that family members possess a constitutionally protected property interest in a decedent’s corpse.[91] Most states, like Kentucky, have followed the traditional common law approach to the issue, or have recognized a family member’s quasi-property interest in their next of kin’s body parts.[92] The Kentucky Supreme Court articulates the common law rule as follows: “The current of authority in this country is to the effect that there is not a property right to a dead body in a commercial sense, but there is a right to bury it which the courts of law will recognize and protect.”[93] The common law rule does not recognize a property right in the body, only a limited possessory interest for burial or lawful disposition.

Dean Prosser seems skeptical of the recognition of a family member’s quasi-property right in a decedent’s corpse, even suggesting that it is a legal fiction, commenting:

 In these cases the courts have talked of a somewhat dubious “property right” to the body, usually in the next of kin, which did not exist while the decedent was living, cannot be conveyed, can be used only for the one purpose of burial, and not only has no pecuniary value but is a source of liability for funeral expenses. It seems reasonably obvious that “property” is something evolved out of thin air to meet the occasion, and that in reality the personal feelings of the survivors are being protected, under a fiction likely to deceive no one but a lawyer.[94]

The constitutionality of a Florida statute authorizing medical examiners to remove corneal tissue from decedents without notifying family members (similar to Kentucky’s statute aforementioned) was challenged in State v. Powell.[95] Under the statute, corneal tissue could not be removed if the decedent’s next of kin objected, but medical examiners had no affirmative duty to seek their permission.[96] The Florida Supreme Court upheld the constitutionality of the statute, holding that family members do not have constitutionally protected liberty or property interest in the decedent’s remains, and thus, are not afforded due process protections before corneal tissue is removed.[97] Plaintiffs cited a number of Supreme Court cases that recognized the freedom of personal choice in family matters in support of their claim.[98] The Court distinguished such cases, reasoning:

 The cases cited recognize only freedom of choice concerning personal matters involved in existing, ongoing relationship among living persons as fundamental or essential to the pursuit of happiness by free persons. We find that the right of the next of kin to a tort claim for interference with burial, established by this Court in Dunahoo, does not rise to the constitutional dimension of a fundamental right traditionally protected under either the United States or Florida Constitution.[99]

Georgia’s cornea removal statute was also challenged on constitutional grounds. In Georgia Lions Eye Bank, Inc. v. Lavant, plaintiffs argued that the statute violated due process by depriving a person of a property right in the corpse of his family member, and failing to provide notice and an opportunity to be heard.[100] The Court upheld the statute, declining to find a constitutionally protected right in the decedent’s body.[101] The Court did, however, recognize the existence of a property right that is limited in its scope, reasoning, “. . .the courts have evolved the concept of quasi property in recognition of the interests of surviving relatives in the possession and control of decedents’ bodies. We do not find this common law concept to be of constitutional dimension.”[102]

The Sixth Circuit Court of Appeals took up the issue in Brotherton v. Cleveland, and reached a vastly different conclusion than state courts in Florida and Georgia.[103] In Brotherton, the plaintiff brought an action under Section 1983, alleging that her husband’s corneas were removed without due process of law, in violation of the Fourteenth Amendment.[104] Before the removal, the plaintiff had voiced her objection to making any sort of anatomical gift to hospital staff, and her objection was documented.[105] Her husband’s body was transported to the coroner’s office for an autopsy, and his corneas were subsequently removed.[106] The hospital did not communicate the plaintiff’s objection to making an anatomical gift.[107]

In order to establish a violation under Section 1983, the plaintiff must prove that she was deprived of a right (here, property) secured by the Constitution or federal law, and that such deprivation occurred under the color of state law.[108] The plaintiff was easily able to meet two of the three elements: she was deprived of her husband’s corneas by the medical examiner, an employee of the state.[109]  In deciding whether the plaintiff had a constitutionally protected property interest in her deceased husband’s corneas, the Court examined how such an interest had previously been treated under Ohio law, emphasizing that “this determination does not rest on the label attached to a right granted by the state but rather on the substance of that right.”[110] The Court found that the plaintiff had an express right, granted by Ohio’s version of the Uniform Anatomical Gift Act, to control the disposal of her husband’s body.[111] Precedent granted her a possessory right to his body, as a well as a claim for disturbance of his body.[112]

Although extremely regulated, in sum, these rights form a substantial interest in the dead body, regardless of Ohio’s classification of that interest. We hold the aggregate of rights granted by the state of Ohio to [plaintiff] rises to the level of a “legitimate claim of entitlement” in [her husband’s] body, including his corneas, protected by the due process clause of the Fourteenth Amendment.[113]

The Court concluded that the plaintiff was not afforded the necessary pre-deprivation process, calling this failure on behalf of the government “an egregious abuse of governmental power.”[114] The Court based the existence of the plaintiff’s constitutionally protected property interest partially on the rights granted to her in the state’s Uniform Anatomical Gift Act to dispose of her husband’s body.[115] It is probable that if such language had not been included in Ohio’s Act, the Sixth Circuit would not have afforded her due process protections.

B. Presumed Consent Compromises Individual Autonomy

            Some critics of the presumed consent organ procurement model are uncomfortable with the notion that silence constitutes consent under the system. They argue that such a system discounts the importance of individual autonomy, thus, “unless we are prepared to advocate control of the body by the state following death, we should seek the approval of families of the deceased. . .”[116] The Florida Supreme Court addressed this argument in State v. Powell.[117] The court reasoned, “Neither federal nor state privacy provisions protect an individual from every governmental intrusion into one’s private life, especially when a statute addresses public health interests.”[118]

The idea that individual autonomy may at times be compromised for the public good is not a new one. The United States Supreme Court took up this issue in 1905 in Jacobson v. Massachusetts, a case involving compulsory smallpox vaccinations.[119] The plaintiff challenged a local law requiring each citizen to be vaccinated or pay a criminal fine, claiming that it violated his inherent right to make his own health care choices and amounted to an assault on his person.[120] The Court patently rejected this argument, finding such minor invasions of personal liberties necessary in maintaining an orderly society.[121] Justice Harlan elaborated on this notion, writing:

The liberty secured by the Constitution of the United States to every person within its jurisdiction does not import an absolute right in each person to be, at all times and in all circumstances, wholly freed from restraint. There are manifold restraints to which every person is necessarily subjected for the common good.[122]

The Court also recognized the right of states to enact “such reasonable regulations [. . .] as will protect the public health and the public safety.”[123]

Effective organ procurement laws strike a balance between morality and individual autonomy. Just as the Court in Jacobson prioritized protecting the population from the spread of the smallpox virus, it is crucial that the government prioritize procuring life-saving organs.[124]  Critics of the presumed consent model argue that it disregards the will of the individual by allowing silence to constitute consent.[125] However, this overruling of the donor’s will also occurs when the decedent’s family is consulted under the current express consent system.[126] In Kentucky, when a decedent is not registered as an organ donor, certain relatives are authorized by statute to make anatomical gifts on the decedent’s behalf.[127] This too has the potential to disregard the will of the individual. Under any organ procurement system, some compromise of individual autonomy is inevitable because organs are removed upon death, when a person is no longer able to communicate his or her wishes.

C. Organ Shortages Persist Despite Presumed Consent Laws

            Opponents of presumed consent argue that the system is ineffective because it has not eliminated organ shortages in the countries in which it has been enacted.[128] While it is true that more organs are needed for transplant than are donated, the argument that the higher rates of organ donation under presumed consent are “of little consequence” because the system is not entirely curing the shortage is ludicrous and insensitive.[129] The argument devalues the lives saved by organ transplants and overstates the sacrifice made when one pledges to become an organ donor. Patients on the organ transplant list are fighting for their lives while they await a lifesaving transplant. Thousands of Americans die every year waiting. When it comes to saving human lives, isn’t any improvement consequential?

D. Presumed Consent Undermines the Societal Benefits an Altruistic System Provides

            Scholars argue that presumed consent undermines the inherent altruistic benefits voluntary donation provides, and that the system will “lead to a situation where the poor, the uneducated, and the legally disenfranchised might bar a disadvantageous burden, and only the more advantaged groups would exercise autonomy since only the more advantaged groups would be aware of their right to opt-out.”[130] This argument is flawed for a number of reasons. First, it assumes that public campaigns aimed at educating people about presumed consent laws will be ineffective, or maybe that they simply will not exist at all, leading to dangerous information asymmetry.

Secondly, it places an undue amount of weight on the minor difference between opting in and opting out. Both are affirmative acts. Under either system, a person is still making a conscious decision not to deprive someone of an organ, which will undoubtedly provide the potential donor with the same benefit of knowing he has potentially saved a life, regardless of the means used to record his choice.[131] Perspective is crucial, and “preserving the privilege of the few to exercise their virtue [is not] a morally sufficient ground for standing in the way of a policy that could save numerous lives.”[132]

E. Reputational Harm and Implications for the Procrastinating Dissenter

            Skeptics of presumed consent contend that the system “insidiously exploits the citizen’s regrettable reluctance to dissent, even though dissent is her right. It would depend for its success on the unhappy fact that most humans are disinclined toward active protest of that which is customary and routine.”[133] In addition, “the procrastinating or reluctant dissenter” may never have the opportunity to “opt-out” of the system.[134] Both of these valid concerns can be mitigated with the inclusion of simple provisions in presumed consent legislation aimed at protecting the confidentiality of dissenters’ identity.

It is reasonable that some who find organ donation objectionable may nonetheless choose not to opt out because they are afraid of the reputational harm that may accompany the act. As long as confidentiality of organ donor records is rigidly maintained, one’s organ donor status will never become common knowledge. The opt-out option could be made available online so dissenters would not even have to interact with a government employee in order to register their objection. The problem of procrastinating dissenters would not be a substantial one as long as presumed consent laws were crafted to allow one numerous opportunities during his or her lifetime to opt-out. The option should be available and easy to access at any time.

Part IV: A Proposal for Presumed Consent Legislation in Kentucky

An ideal system of organ procurement is one created to effectively balance two goals: (1) increasing the supply of organs available for transplant, while (2) maximizing individual autonomy.[135]

In order to pass ethical muster, it is imperative that implementation of presumed consent laws be accompanied with a vigorous public education campaign.[136] Because silence constitutes consent under this model, it is the role of the government and health care providers to ensure that silence does not, in practice, actually constitute a lack of knowledge of the right to object.[137] It is crucial that people are able to access the information they need in order to make an informed choice about whether or not to opt out of the system.

A. Basic Framework of Kentucky Presumed Consent Legislation

            In order for a system of presumed consent to truly respect individual autonomy, the opportunity to opt-out of organ donation must be constantly available and accessible. For minors, parents’ desire to have their child opted out of the organ donor registry should be recorded for the first time at birth. Unless the minor’s parent or legal guardian decides to change his or her donor status, it should remain in place until the child reaches age sixteen if applying for a driver’s license, or otherwise until the child reaches the age of majority (age eighteen in Kentucky). At either of these points, the parent’s desires are no longer taken into account, and the child should be allowed to make his or her own choice about whether or not to opt-out. The age range of sixteen to eighteen represents some of a young adult’s first interactions with government administration—obtaining a driver’s license and registering to vote.

It follows that under the proposal, adults should also be able to revisit or change their donor status at any time. Any routine interaction with the government presents an opportunity to opt-out.  It is imperative that just as Kentucky citizens can now register to vote, change their political party affiliation, and change their permanent voting address online with relative ease, opting out of organ donation or changing one’s donor status should also be possible online.[138]

In order to mitigate the reputational harm of opting out, as well as protect the privacy interests of Kentucky citizens, organ donor status should be afforded federal and state privacy protections. Such information should be treated no differently under Kentucky law than any other confidential medical record. Maintaining confidentiality of the donor database must be of utmost priority; if individuals are confident that their choice to opt-out will remain confidential, they are more likely to take the affirmative step to do so, increasing the likelihood that the authentic will of the individual is documented and respected. [139]

Although “pure” presumed consent systems in which families are not consulted in any manner are most successful in terms of yielding the highest amount of organs available for transplant, they also arguably disrespect and disregard the wishes of surviving family members. The success of presumed consent systems, as we have seen, relies heavily on public opinion.[140] Public opinion would be presumably low if family members felt as though their concerns and objections were ignored. To avoid this problem, under this proposed system, the decedent’s family should be able to object to organ removal. However, the doctor will not affirmatively consult with them regarding the decedent’s donor status, so the burden is on the family to raise any concerns about the decedent’s wishes. Family members need not have specific objections (i.e. a religious exemption) in order to object; health care providers will respect any objection. Such a provision seems the best way to balance the goal of obtaining more organs with the autonomy of the individual and wishes of the family during a traumatic loss of a loved one.

B. Educational Campaign

            The danger of information asymmetry exists in any interaction between the government and the governed. In order to uphold values of individual autonomy, it is essential for Kentuckians to be aware not only of the implementation of presumed consent laws and their implications, but also the nuts and bolts of the opt-out process. Anyone wishing to object must know how to access the means to do so.

This means that well before presumed consent laws are enacted, a widespread public information campaign must be launched. The purpose of the campaign should be twofold: it should be aimed at (1) dispelling myths about organ donation (for example, the common misconception that one cannot have an open-casket viewing if organs are donated), and (2) explaining the process of opting out.[141] It is also important that Kentuckians know where to find answers to their questions about the new legislative scheme. It is likely that almost all money spent on implementing this new presumed consent law will go toward funding the educational campaign.

Social media should be the major target of the public awareness campaign. According to 2017 statistics, 81% of Americans have a social media profile.[142] Although states have spent hundreds of millions of dollars on media campaigns over the years in hopes of increasing the number of registered organ donors, organ donation rates in America have remained relatively static while the need for organs has increased drastically.[143] The United States Department of Transplantation has created a number of grant programs aimed at improving donation rates.[144] These efforts proved fruitless as well.[145]

In an attempt to tackle this problem in an innovative way, Facebook partnered with the transplant team at Johns Hopkins, the Living Legacy Foundation of Baltimore, and Donate Life America and altered Facebook profile options to allow a user to designate their organ donor status.[146] If a Facebook member chose to select “organ donor” to their profile, they were immediately directed to a link to their state’s organ donor registry, providing easy accessibility to officially register.[147] Facebook users who remained undecided about organ donation were guided to Internet links providing information and dispelling organ donation myths.[148]

The organ donor initiative went live on Facebook on May 1, 2012 and the results are astounding.[149] On the first day of the initiative, online organ registrations increased by over 21-fold—going from a baseline average of 616 registrations to 13,054 online registrations.[150] Online registration rates remained elevated for the following twelve days of the initiative, while DMV donor registration remained static.[151] The impact of the implementation of presumed consent laws in conjunction with an effective social media education campaign has the potential to increase the number of organ donors in Kentucky dramatically.

Along with the social media campaign, public service announcements should appear on television, ramping up in the months leading up to the law’s enactment. Every high school sophomore (usually between the ages of fifteen and sixteen) attending a public Kentucky school should be required to attend an informational seminar about organ donation facilitated by state officials. By the time these students apply for a driver’s license, they will understand presumed consent laws and are well equipped to make an informed decision regarding their donor status. Students who are unable to attend the information session (perhaps because they attend a private school or are homeschooled) should be shown a video containing the same information before they are allowed to take the test to obtain their learner’s permit. Also, it is imperative that the state maintain a toll free number and a website to field questions and provide information about the new presumed consent system.

Conclusion

            As of August, 2017, in the United States more than 116,000 people are languishing on the organ transplant list, awaiting their opportunity to receive a lifesaving organ.[152] The current express consent organ donation system falls far short of meeting the ever-increasing demand for organs, even when coupled with aggressive, expensive public awareness campaigns. The current approach to organ procurement in the United States has left a huge disparity between supply and demand for decades. On average, twenty people die each day waiting for an organ.[153] That brutal statistic alone illustrates the urgency of the organ shortage.

Although public opinion overwhelmingly supports organ donation, this positive sentiment does not translate into an adequate number of people on the organ donor registry[154], making it imperative that the government intervene in an effort to alleviate this deadly shortage. The method of increasing organ donors that would have the most impact in the shortest amount of time is the adoption of a system of presumed donative consent. As Emily Morris explains in her 2002 Kentucky Law Journal article on the topic, “Bodies now have a utility after death that they never had before: they possess the ability to save lives. Public health laws need to be rewritten to reflect that change.”[155] Although presumed consent laws may not alleviate the organ shortage entirely, if implemented after an effective educational campaign, it can help close the gap between supply and demand.[156]

Legal and ethical concerns accompany any organ procurement system, but they are especially complex when it comes to presumed consent, which makes public educational campaigns even more crucial to the scheme’s success. While concerns over bodily integrity and individual autonomy are certainly valid, at some point our society must collectively begin prioritizing the health and welfare of the living over what happens to our bodies after our death. The government must take an active role in showing the American people that presumed donative consent is not a “fringe” topic, but it is instead a legislative scheme that, if implemented successfully, could save tens of thousands of lives every year.[157]

 

[1] University of Kentucky College of Law, J.D. Expected May 2018.

[2] Dan Lieberman & Ely Brown, The Waiting Game: 9 Organ Transplant Patients Fight to Survive, ABC Nightline (May 1, 2012), http://abcnews.go.com/Health/waiting-game-organ-transplant-patients-fight-survive/story?id=16245341#1; John S. Child et al., Echocardiographic Manifestations of Infiltrative Cardiomyopathy A Report of Seven Cases Due to Amyloid, American College of Chest Physicians, Chest, 70: 6, at 730, Dec. 1976, http://journal.chestnet.org/article/S0012-3692(16)38149-1/pdf.

[3] Lieberman & Brown, supra note 2; Double-transplant Survivor Starts New Life, New England Cable News (Jan. 17, 2014), http://www.necn.com/news/new-england/_NECN__Double-transplant_Survivor_Starts_New_Life_NECN-247631031.html

[4] Lieberman & Brown, supra note 2.

[5] New England Cable News, supra note 3.

[6] Dep’t of Health and Hum. Serv., U.S. Government Information on Organ Donation and Transplantation, https://www.organdonor.gov/statistics-stories/statistics.html (last visited Sept. 17, 2017).

[7] Id.

[8] Organ Transplants: A Brief History, History.com (Feb. 12, 2012), http://www.history.com/news/organ-transplants-a-brief-history.

[9] See id.

[10] Id.

[11] Id.

[12] Dep’t of Health and Hum. Serv., Timeline of Historical Events and Significant Milestones, https://www.organdonor.gov/about/facts-terms/history.html (last visited September 16, 2017).

[13] Legis. Budget & Fin. Committee, A Performance Evaluation of Pennsylvania’s Organ and Tissue Donor Awareness Program, June 2007, http://lbfc.legis.state.pa.us/Resources/Documents/Reports/145.pdf.

[14] Dep’t of Health and Hum. Serv., What Can be Donated, https://www.organdonor.gov/about/what.html#expandcollapse, (last visited September 16, 2017).

[15] Unif. Determination of Death Act (Nat’l Conference on Comm’rs on Unif. State Laws 1981).

[16] Dep’t of Health and Hum. Serv., The Deceased Donation Process https://www.organdonor.gov/about/process/deceased-donation.html, (last visited September 16, 2017).

[17] Id.

[18] Id.

[19] Id.

[20] Id.

[21] See Dep’t of Health and Hum. Serv supra note 16.

[22] Id.

[23] Id.

[24] Id.

[25] Id.

[26] See Dep’t of Health and Hum. Serv supra note 6.

[27] See Dep’t of Health and Hum. Serv., Sign Up to be an Organ Donor, https://organdonor.gov/register.html (Last visited October 14, 2017).

[28] Tiffanie Wen, Why Don’t More People Want to Donate Their Organs?, The Atlantic (Nov. 10, 2014), https://www.theatlantic.com/health/archive/2014/11/why-dont-people-want-to-donate-their-organs/382297/.

[29] See generally A.M. Cameron et al., Social Media and Organ Donor Registration: The Facebook Effect, 13 AM. J. OF TRANSPLANTATION 2061 (2013).

[30] Id.

[31] David E. Jefferies, The Body as a Commodity: The Use of Markets to Cure the Organ Deficit, 5 Ind. J. Global Leg. Stud. 621, 627 (1998).

[32] Id. at 628.

[33] Id.

[34] Id. (quoting Melissa N. Kurnit, Organ Donation in the United States: Can We Learn From Successes Abroad?, 17 B.C. Int’L & Comp. L. Rev. 405, 427 (1994).

[35] Emily D. Morris, Note, The Organ Trail: Express Versus Presumed Consent as Paths to Blaze in Solving a Critical Shortage, 90 Ky. L. J. 1125, 1130 (2001).

[36] See generally National Conference of Commissioners on Uniform State Laws, Revised Uniform Anatomical Gift Act, 2006, available at http://www.uniformlaws.org/shared/docs/anatomical_gift/uaga_final_aug09.pdf (Last visited Oct. 17, 2017).

[37] Uniform Anatomical Gift Act (2006), §16.

[38] Jeffries, supra note 31, at 630.

[39] Jefferies, supra note 31, at 629–30.

[40] Morris, supra note 35, at 1131 (quoting Alexandra K. Glazier, The Brain Dead Patient Was Kept Alive” and Other Disturbing Misconceptions; A Call for Amendments to the Uniform Anatomical Gift Act, 9 Kan. J.L. & Pub. Pol’y 640, 645 (2000).

[41] Jefferies, supra note 31, at 630.

[42] Id.

[43] Id.at 630–31.

[44] Melissa N. Kurnit, Organ Donation in the United States: Can we Learn from Successes Abroad?, 17 B.C. Int’l & Comp. Law. Rev. 405, 413 (1994).

[45] Id.

[46] See Id. at 413–14, 432–33.

[47] Ky. Rev. Stat. Ann. § 311.1955 (West 2010).

[48] Ky. Rev. Stat. Ann. § 311.1915 (West 2010).

[49] Ky. Rev. Stat. Ann. § 311.1817 (West 2010).

[50] Casey Leins, Should the Government Decide if You’re an Organ Donor?, U.S. News & World Report, Feb. 12, 2016, https://www.usnews.com/news/articles/2016-02-12/presumed-consent-and-americas-organ-donor-shortage.

[51] Jefferies, supra note 31, at 628–29.

[52] Wen, supra note 28.

[53] Id.

[54] Id.

[55] See Jefferies, supra note 31, at 632.

[56] Id.

[57] Jefferies, supra note 31, at 634.

[58] Id. at n. 72.

[59] Everton Bailey, Should the State have Rights to your Organs? Dissecting Brazil’s Mandatory Organ Donation Law, 30 U. Miami Inter-Am. L. Rev. 707, 719–20 (1999).

[60] Kurnit, supra note 44, at 423.

[61] Id.

[62] Id.

[63] Id.

[64] Id.

[65] Christian Williams, Note, Combatting the Problems of Human Rights Abuses and Inadequate Organ Supply Through Presumed Donative Consent, 26 Case W. Res. J. Int’l. 315, 340 (1994).

[66] Casey Leins, Should the Government Decide if You’re an Organ Donor?, U.S. News (Feb. 12, 2016), http://www.usnews.com/news/articles/2016-02-12/presumed-consent-and-americas-organ-donor-shortage.

[67] Steven Morris, Welsh “Deemed Consent” Organ Donation System Shows Promising Results, the guardian (Sept. 4, 2016), https://www.theguardian.com/society/2016/sep/04/wales-deemed-consent-organ-donation-system-promising-results.

[68] Id.

[69] Id.

[70] Alejandra Zúñiga-Fajuri, Increasing Organ Donation by Presumed Consent and Allocation Priority: Chile, Bull. World Health Org. (World Health Org.), March 2015, at 199.

[71] Id.

[72] Williams, supra note 65, at 339–40. .

[73] See discussion supra Part II.A.

[74] Id.

[75] Leins, supra note 66.

[76] See Ky. Rev. Stat. Ann. § 311.1961 (West, Westlaw through 2017 reg. sess.).

[77] Id.

[78] See id.

[79] Leins, supra note 66.

[80] Madison Park, California, New York Mull Changes to Organ Donor Laws, CNN (May 10, 2010), http://www.cnn.com/2010/HEALTH/05/10/organ.donation.jobs.laws/#.

[81] See id.

[82] Id.

[83] See Daniela Altimari, Republicans Blast Mandatory Organ Donation Proposal, Hartford Courant (March 16, 2017), http://www.courant.com/politics/hc-mandatory-organ-donation-20170316-story.html.

[84] Id.

[85] Id.

[86] Id.

[87] U.S. Const. Amend. 5.

[88] Kurnit, supra note 44, at 438.

[89] Bd. of Regents of State Colls. v. Roth, 408 U.S. 564, 577 (1972).

[90] Moore v. Regents of the Univ. of Cal., 793 P.2d 479, 487-92 (Cal. 1990).

[91] See Brotherton v. Cleveland, 923 F.2d 477, 482 (6th Cir. 1991).

[92] See id. at 480.

[93] Neighbors v. Neighbors, 65 S.W. 607, 608 (Ky. 1901).

[94] State v. Powell, 497 So. 2d 1188, 1192 (Fla. 1986) (quoting W. Prosser, The Law of Torts, 43–44 (2d ed. 1955)).

[95] See id.

[96] Id. at 1189.

[97] Id. at 1193.

[98] Id.

[99] Id.

[100] See Georgia Lions Eye Bank, Inc. v. Lavant, 335 S.E.2d 127, 127–28 (Ga. 1985).

[101] Id. at 128.

[102] Id.

[103] See Brotherton v. Cleveland, 923 F.2d 477 (6th Cir. 1991).

[104] Id. at 478–79.

[105] Id. at 478.

[106] Id.

[107] Id.

[108] 42 U.S.C. § 1983 (1996).

[109] Brotherton v. Cleveland, 923 F.2d 477, 479 (6th Cir. 1991).

[110] Id. at 481-82 (citations omitted).

[111] Id. at 482.

[112] Id.

[113] Id.

[114] Id.

[115] Id.

[116] Jefferies, supra note 32, at 642.

[117] See State v. Powell, 497 So. 2d 1188 (Fla. 1986).

[118] Id. at 1193.

[119] See Jacobson v. Massachusetts, 197 U.S. 11 (1905).

[120] Id. at 26.

[121] Id. at 26, 27–29.

[122] Id. at 26.

[123] Id. at 25.

[124] See id.  

[125] Jefferies, supra note 31, at 649.

[126] Kurnit, supra note 44, at 439-40.

[127] Ky. Rev. Stat. Ann. § 311.1925 (West 2017).

[128] See Bailey, supra note 59, at 719.

[129] Jefferies, supra note 31, at 650.

[130] Bailey, supra note 59, at 721.

[131] Kurnit, supra note 44, at 436.

[132] Arthur J. Matas et al., A Proposal for Cadaver Organ Procurement: Routine Removal with Right of Informed Refusal, 10 J. Of Health Pol., Pol’y & L. 231, 242 (1985).

[133] Bailey, supra note 59, at 720.

[134] Id. at 721.

[135] Jefferies, supra note 31, at 640.

[136] U.S. Dept. of Health and Human Serv., An Evaluation of the Ethics of Presumed Consent, Organ Procurement and Transplantation Network, June 1993, https://optn.transplant.hrsa.gov/resources/ethics/an-evaluation-of-the-ethics-of-presumed-consent/.

[137] See id.

[138] See Jack Brammer, Online Voter Registration Comes to Kentucky, Herald Leader (Mar. 14, 2016), http://www.kentucky.com/news/politics-government/article65982842.html.

[139] Sarah E. Statz, Note, Finding the Winning Combination: How Blending Organ Procurement Systems Used Internationally Can Reduce the Organ Shortage, 39 Vand. J. Transnat’l L. 1677, 1706 (Nov. 2006).

[140] See Leins, supra note 66.

[141] See e.g., Organ Donation: Don’t Let These Myths Confuse You, Mayo Clinic (Feb. 16, 2017), http://www.mayoclinic.org/healthy-lifestyle/consumer-health/in-depth/organ-donation/art-20047529.

[142]Percentage of U.S. Population with a Social Media Profile from 2008 to 2017, Statista, https://www.statista.com/statistics/273476/percentage-of-us-population-with-a-social-network-profile/ (last visited September 29, 2017).

[143] Cameron et al., supra note 29, at 2059.

[144] Id. at 2059–60.

[145] Id. at 2060.

[146] Id.

[147] Id.

[148] Id.

[149] See id. at 2060–61.

[150] Id. at 2059.

[151] Id. at 2061.

[152] See Dep’t of Health and Hum. Serv., supra note 5.

[153] Id.

[154] See Cameron et al., supra note 29, at 2059.

[155] Morris, supra note 35, at 1148.

[156] Id.

[157] See Altimari, supra note 83.