This commentary responds to Samuel Director's article “Dementia and Concurrent Consent to Sex... more This commentary responds to Samuel Director's article “Dementia and Concurrent Consent to Sexual Relations,” in the May‐June 2023 issue of the Hastings Center Report. In the article, Director sets out a set of conditions for sexual consent after one partner in a committed, long‐term relationship develops dementia. While we share Director's view that dementia patients should not be categorically cut off from sexual intimacy, we caution against the use of his approach as a rigid test for allowing sexual activity. Director's analysis does not address the full range of plausibly permissible sexual relationships, which is unfortunate, as intimacy has consistently been linked to physical and psychological well‐being. Moreover, because decisions about sex often carry moral and emotional overtones, we propose that a dementia patient's prior values should sometimes be considered by caregivers in a measured way.
Misconceptions about whether and how living donors may receive financial support appear to be wid... more Misconceptions about whether and how living donors may receive financial support appear to be widespread. These misconceptions may be perpetuated by unclear or incomplete language in informed consent documents. Without accurate written information about the National Organ Transplant Act of 1984 (NOTA) (1), donors may forgo legal financial support and question their decision to donate. The financial burden of evaluation and donation (2) may disproportionately affect vulnerable populations. We recommend that the removal of financial disincentives begin by disclosing explicit and accurate information regarding available mechanisms to defray donors' costs. We reviewed a convenience sample of informed consent forms for living donor (kidney n = 8, liver n = 2) and transplant candidate (kidney n = 4, liver n = 2) evaluation from nine geographically diverse centers with medium-and high-volume living donor programs. Our analysis focused on costs to donors that are clearly addressed by extant legislation and regulatory policy. We recognize that potential donors and recipients receive information from other sources, including conversations with the transplant team. However, the informed consent document may help ensure consistent donor education and is available for future reference should questions arise later. We identified four misconceptions, which are reinforced by ambiguous language or omissions in donor informed consent documents (Table 1). Five of the six recipient consent forms did not include information about the financial implications for living donors. Misconception 1: Donors can only be helped with the medical costs of donation. Clarification: Donors may receive assistance to defray expenses of travel, housing, food, childcare, and lost wages during evaluation, donation, and for 2 years postsurgery (1,3,4). 1 Misconception 2: Financial assistance can be provided to defray only a donor's expenses. Clarification: Coverage may be offered for up to two caregivers or family members who help or accompany the donor (1,5). 1 Misconception 3: Donors may only be reimbursed for expenses. Clarification: Others may pay the expenses directly on behalf of the donor (1). Misconception 4: Only National Living Donor Assistance Center (NLDAC) is allowed to help donors. Clarification: NOTA does not limit who can help donors.
Biomedical research and its translation continue to pose normative questions about the nature of ... more Biomedical research and its translation continue to pose normative questions about the nature of relations between researcher and participant and the role of research involving human subjects in society. Lee (2021) posits that, at least in the case of precision medicine, conceptualizing collected specimens and information as socially embedded gifts can advance values such as justice and community. Following the structuralism of Mauss (2002), Lee characterizes biological gifts as giving rise to relationships characterized by expectations, even obligations, of reciprocity. Although not emphasized in her Target Article, in the classic anthropological literature, relationships cemented by gifts often have the character of a perpetual moral economy, because each conveyance confers a new obligation to reciprocate and because gifts cannot be completely alienated from the giver’s personality (Mauss 2002). Distinguishing the linked components in this account—gifts, reciprocity, and relationships—is critical since they take different shapes in different contexts and may be more or less severable from each other. Analytically, one could maintain that institutions should rely on formally voluntary donation (“gifts”) to build biobanks and data lakes, yet reject or narrowly circumscribe any duty to reciprocate. Or one could hold that certain kinds of reciprocity are integral to good clinician-patient interactions while preferring to keep these interactions relatively transactional for reasons of privacy and convenience. How workable such arrangements are in practice, and specifically the practice of precision medicine, are empirical questions beyond the scope of this comment. Suffice it to say that understandings of gift giving without the expectation of reciprocity have some resonance, and exchanges between two people are not always intended to create enduring relationships (Martin 2017). Lee positions her ethical strategy for precision medicine within a movement to elevate “communal values” in bioethical thought, as complements or alternatives to approaches criticized as too atomistic, preoccupied by niche issues, and divorced from social realities. I do not pretend that this volume will settle debate about the priority our field, encompassing myriad roles and interests, implicitly assigns to various concerns. I would, however, note that many of the specific issues Lee calls out are topics of current discussion in humanistic, sociological, and policy-oriented scholarship on health. These include labor that may be obscured by romanticized conceptions of healthcare as a space where beneficence reigns, the uneven representation of racialized populations in research and unequal clinical experiences, and the influence of social conditions on health. Insofar as Lee’s Target article calls for active engagement with these issues, I doubt that it will be particularly controversial among mainstream bioethicists. But she takes a further step, setting forth a loose framework for navigating these issues. The fulcrum of this framework—what links the possibilities of gift and responsibility—is reciprocity. Unfortunately, Lee’s Target Article does not directly define the concept, although she distinguishes it from strict quid pro quo, which has inherent limitations with respect to unfolding research of a genetic nature. Mauss, drawing inspiration from tokens of generosity and mutual respect in hierarchical traditional societies, evoked the Arthurian Round Table as if to say these aristocratic virtues retain their value on more
Paired organ exchange can be used to circumvent living donor‐recipient ABO incompatibilities. Her... more Paired organ exchange can be used to circumvent living donor‐recipient ABO incompatibilities. Herein, we present the first case of successful liver paired exchange in North America. This 2‐way swap required 4 simultaneous operations: 2 living donor hepatectomies and 2 living donor liver transplants. A nondirected anonymous living donor gift initiated this domino exchange, alleviating an ABO incompatibility in the other donor‐recipient pair. With careful attention to ethical and logistical issues, paired liver exchange is a feasible option to expand the donor pool for incompatible living liver donor‐recipient pairs.
About 6,000 individuals participate in the U.S. transplant system as a living organ donor each ye... more About 6,000 individuals participate in the U.S. transplant system as a living organ donor each year. Organ donation (most commonly a kidney or part of liver) by living individuals is a unique procedure, where healthy patients undergo a major surgical operation without any direct functional benefit to themselves. In this article, the authors explore how the ideal of informed consent guides education and evaluation for living organ donation. The authors posit that informed consent for living organ donation is a process. Though the steps in this process are partially standardized through national health policy, they can be improved through institutional structures at the local, transplant center-level. Effective structures and practices aimed at supporting and promoting comprehensive informed consent provide more opportunities for candidates to ask questions about the risks and benefits of living donation and to opt out voluntarily Additionally, these practices could enable new ways of...
Uterine factor infertility (UFI) is a condition that affects approximately 1.5 million women arou... more Uterine factor infertility (UFI) is a condition that affects approximately 1.5 million women around the world. Advances in reproductive science have made it possible that uterine transplantation may be the first true treatment for women with UFI. While uterine transplantation is still in the experimental stages, the first successful live births from women who received a uterine transplant mark the real potential of this procedure. Although uterine transplant may offer an important new step for the management of women with UFI, it also poses important ethical questions that must be thoroughly considered and addressed before this procedure becomes a clinical reality. In this article, we review the major ethical issues associated with the study of and expected future clinical translation of uterine transplantation and propose a series of steps to reduce risks to all those involved in the process.
"In this commentary, we identify several ways in which process of registering people as organ don... more "In this commentary, we identify several ways in which process of registering people as organ donors in the United States departs from the conditions ordinarily thought to be requirements for autonomous medical decisions." We then outline three possible ways of reckoning with this departure.
Letter to the Editor, American Journal of Transplantation, with table. Suggests ways of improving... more Letter to the Editor, American Journal of Transplantation, with table. Suggests ways of improving informed consent documents used in connection with living donor organ transplantation.
Yale Journal of Health Policy, Law, and Ethics, 2008
This essay traces the history of the National Organ Transplant Act of 1984 (NOTA) from its social... more This essay traces the history of the National Organ Transplant Act of 1984 (NOTA) from its social and technological origins, through a moment of bipartisan legislative convergence, to the Act’s contentious implementation and revision. Congress enacted NOTA to address three perceived deficiencies in America’s loosely-knit system of organ allocation: a shortage of transplantable organs, a lack of coordination, and inadequate public financing (in comparison to the costlier alternative of dialysis). These problems came to a head when advances in immunosuppression enabled numerous patients to benefit from a given donor organ, uncomfortably enlarging the role of value judgments in organ allocation. In a morally and politically precarious situation, transplant programs’ reliance on private financial largesse was seen as a recipe for corruption and a threat to public acceptance of organ donation.
Legislators responded to diverse complaints by introducing measures to unify and strengthen the nation’s organ-sharing infrastructure. NOTA’s best-known provision, outlawing the exchange of “valuable consideration” for organs, represented a vision of system integrity. Congress overwhelmingly approved an Act that addressed egregious instances of waste and misaligned incentives, while leaving difficult, politically-charged questions to an appointed taskforce. This delegation of responsibility for organ allocation policies set a pattern for ongoing collaboration between public officials and quasi-governmental administrators under NOTA. The division of labor helps to explain disagreement about what, exactly, NOTA sought to accomplish and whether the allocation system has remained faithful to its envisioned mission.
A Death Retold: Jesica Santillan, The Bungled Transplant, and Paradoxes of Medical Citizenship, 2006
This book chapter, later expanded into the essay “E Pluribus Unos," turns a historical lens on th... more This book chapter, later expanded into the essay “E Pluribus Unos," turns a historical lens on the problem of public confidence in organ allocation in the U.S.—its theoretical construction, practical importance, and bureaucratic management. The shorter version originally appeared in A Death Retold, edited by Keith Wailoo, Julie Livingstone, and Peter Guarnaccia and published as part of the University of North Carolina Press's Studies in Social Medicine series.
A disabled elevator operator loses her job because it is disappearing from the national economy, ... more A disabled elevator operator loses her job because it is disappearing from the national economy, and she cannot find another suitable line of work. Should she receive Social Security disability benefits or unemployment insurance benefits? Does the answer to this question change if her inability to hold gainful employment is partly the result of illegal conduct by private parties, such as workplace safety violations or employment discrimination? Such problems in the implementation of administrative law have high enough stakes for individuals with disabilities to litigate. Courts, however, have not always reached a consistent application of the relevant statutes and regulations on the basis of either plain meaning or abstract logic. Under the tenets of judicial construction, when these interpretive methods prove inadequate, judges may look to inferred legislative intent.
This essay seeks interpretive guidance from the history of compromises, coalitions, and pronouncements giving rise to Social Security, the Americans with Disabilities Act, and the Ticket to Work and Work Incentives Improvement Act of 1999.
Perhaps surprisingly, a shared set of organizing ideas is recognizable in these disparate legislative initiatives. Among these core understandings are a social-contract conception of long-term employment, a functional understanding of disability, a goal of enlarging individuals’ self-determination through economic security, and a preference for rehabilitation and reemployment when practicable. I suggest that attention to these ideas could partly resolve a split among appellate courts in their handling of actual cases. At the same time, some complex and borderline cases are more appropriately left to the discretion of the executive agencies administering the programs, as the U.S. Supreme Court affirmed in Barnhart v. Thomas (2003).
This short comment is a solicited response to a longer essay by Michael Gross, titled “Why Treat ... more This short comment is a solicited response to a longer essay by Michael Gross, titled “Why Treat the Wounded?” Gross (no relation) sets forth a theory of medical justice based on a sharp distinction between civilian healthcare, where all are equally entitled to a basic “level” of care, and battlefield care, which he regards as a utilitarian exercise properly governed by a salvage ethos. He then applies this approach to various populations, markedly disapproving of special provisions for returned veterans. My response focuses on a different population, captive civilians and prisoners of war, to highlight some holes in his framework. In a world where medical care is necessarily specialized and delivered through concrete institutions, Gross’s universalistic principles do not specify which institutions are responsible for whom. For different individuals, the nation state may be one’s country, one’s employer, one’s health care provider, one’s custodian, one’s enemy. As long as this is the case, we need some account of the moral significance of these relationships. Also incompletely elaborated is the central notion of a “level” of medical care. When a nation has a high degree of control over environmental conditions (as with captive populations), might it not have different medical responsibilities than when a patient walks into the emergency room, because of differences in social context? If so, this suggests that how people are injured matters—casting doubt on Gross’s assumption that previous military service is irrelevant on the home front. As long as these crucial ambiguities in Gross’s framework remain unresolved, his account will remain unpersuasive.
"This short comment is a solicited response to Jonathan Moreno and Sam Berger’s essay, “Biotechno... more "This short comment is a solicited response to Jonathan Moreno and Sam Berger’s essay, “Biotechnology and the New Right: Neoconservatism’s Red Menace.” The essay’s authors appraise a school of thought, particularly influential during the George W. Bush administration, which they dub the “neoconservative” critique of biotechnology. Moreno and Berger treat this critique as a sort of inchoate Marxian analysis, espoused by conservative commentators who are uneasy about the social consequences of technological change but unwilling to take their concerns to their logical political and economic conclusions. Nonetheless, Moreno and Berger, as self-styled progressives, applaud the neoconservatives for refocusing policy discussion on the ends of biotechnology in society, rather than the mechanics of regulatory procedures.
Moreno and Berger have identified an important intellectual development in the emergence of a distinct new school of conservative thought about biotechnology. My comment challenges their genealogy and the normative cues they would take from the neoconservative school. In short, I read the neoconservative critique as a species of identity politics aiming to police the human identity. Although the movement’s expositors make use of Marxian terms such as “alienation,” these commentators also draw extensively on Aristotelian virtue ethics, Judeo-Christian religious themes such as the divine image, and late twentieth-century ideas about representation and belonging. Such ideas are historically- and culturally-situated, even if they have stood the test of time. People of any ideological stripe should appreciate that (1) our ability to shape distant “ends” is constrained by the limits of foresight and (2) self-government is a process, not a singular event. Hence, in a liberal democracy such as ours, the development and regulation of technology should be tentative, pluralistic, unpredictable, and unending."
The discipline of bioethics aims to resolve moral dilemmas in medicine according to a set of cons... more The discipline of bioethics aims to resolve moral dilemmas in medicine according to a set of consensus principles. For example, the principle of autonomy is thought to require individuals’ consent for research participation. Often, this approach does not indisputably point to one right answer because principles conflict and are differently valued by different people. In Against Bioethics (2005), Jonathan Baron argues that the methodology of “decision analysis” would yield better results than balancing or prioritizing among principles. This short comment responds to one of Baron’s illustrations, which would condition the duty to obtain consent on a sort of poll of individual preferences. I note that the consent requirement is ultimately backstopped by the courts because it is rooted in legal theories of negligence and battery. The strict, straightforward approach reflects a kind of rule-based utilitarianism that courts are comfortable and competent at implementing. Without a similar, institutionalized framework for distinguishing legitimate applications of decision analysis from abuses, Baron’s case is moot.
Yale Journal of Health Policy, Law, and Ethics, 2005
This issue of the Yale Journal of Health Policy, Law and Ethics marks our fifth year of publicati... more This issue of the Yale Journal of Health Policy, Law and Ethics marks our fifth year of publication. Our anniversary is a time to celebrate, but also a time for reflection. The past half-decade has brought dramatic developments in medicine and health policy-from the ...
This commentary responds to Samuel Director's article “Dementia and Concurrent Consent to Sex... more This commentary responds to Samuel Director's article “Dementia and Concurrent Consent to Sexual Relations,” in the May‐June 2023 issue of the Hastings Center Report. In the article, Director sets out a set of conditions for sexual consent after one partner in a committed, long‐term relationship develops dementia. While we share Director's view that dementia patients should not be categorically cut off from sexual intimacy, we caution against the use of his approach as a rigid test for allowing sexual activity. Director's analysis does not address the full range of plausibly permissible sexual relationships, which is unfortunate, as intimacy has consistently been linked to physical and psychological well‐being. Moreover, because decisions about sex often carry moral and emotional overtones, we propose that a dementia patient's prior values should sometimes be considered by caregivers in a measured way.
Misconceptions about whether and how living donors may receive financial support appear to be wid... more Misconceptions about whether and how living donors may receive financial support appear to be widespread. These misconceptions may be perpetuated by unclear or incomplete language in informed consent documents. Without accurate written information about the National Organ Transplant Act of 1984 (NOTA) (1), donors may forgo legal financial support and question their decision to donate. The financial burden of evaluation and donation (2) may disproportionately affect vulnerable populations. We recommend that the removal of financial disincentives begin by disclosing explicit and accurate information regarding available mechanisms to defray donors' costs. We reviewed a convenience sample of informed consent forms for living donor (kidney n = 8, liver n = 2) and transplant candidate (kidney n = 4, liver n = 2) evaluation from nine geographically diverse centers with medium-and high-volume living donor programs. Our analysis focused on costs to donors that are clearly addressed by extant legislation and regulatory policy. We recognize that potential donors and recipients receive information from other sources, including conversations with the transplant team. However, the informed consent document may help ensure consistent donor education and is available for future reference should questions arise later. We identified four misconceptions, which are reinforced by ambiguous language or omissions in donor informed consent documents (Table 1). Five of the six recipient consent forms did not include information about the financial implications for living donors. Misconception 1: Donors can only be helped with the medical costs of donation. Clarification: Donors may receive assistance to defray expenses of travel, housing, food, childcare, and lost wages during evaluation, donation, and for 2 years postsurgery (1,3,4). 1 Misconception 2: Financial assistance can be provided to defray only a donor's expenses. Clarification: Coverage may be offered for up to two caregivers or family members who help or accompany the donor (1,5). 1 Misconception 3: Donors may only be reimbursed for expenses. Clarification: Others may pay the expenses directly on behalf of the donor (1). Misconception 4: Only National Living Donor Assistance Center (NLDAC) is allowed to help donors. Clarification: NOTA does not limit who can help donors.
Biomedical research and its translation continue to pose normative questions about the nature of ... more Biomedical research and its translation continue to pose normative questions about the nature of relations between researcher and participant and the role of research involving human subjects in society. Lee (2021) posits that, at least in the case of precision medicine, conceptualizing collected specimens and information as socially embedded gifts can advance values such as justice and community. Following the structuralism of Mauss (2002), Lee characterizes biological gifts as giving rise to relationships characterized by expectations, even obligations, of reciprocity. Although not emphasized in her Target Article, in the classic anthropological literature, relationships cemented by gifts often have the character of a perpetual moral economy, because each conveyance confers a new obligation to reciprocate and because gifts cannot be completely alienated from the giver’s personality (Mauss 2002). Distinguishing the linked components in this account—gifts, reciprocity, and relationships—is critical since they take different shapes in different contexts and may be more or less severable from each other. Analytically, one could maintain that institutions should rely on formally voluntary donation (“gifts”) to build biobanks and data lakes, yet reject or narrowly circumscribe any duty to reciprocate. Or one could hold that certain kinds of reciprocity are integral to good clinician-patient interactions while preferring to keep these interactions relatively transactional for reasons of privacy and convenience. How workable such arrangements are in practice, and specifically the practice of precision medicine, are empirical questions beyond the scope of this comment. Suffice it to say that understandings of gift giving without the expectation of reciprocity have some resonance, and exchanges between two people are not always intended to create enduring relationships (Martin 2017). Lee positions her ethical strategy for precision medicine within a movement to elevate “communal values” in bioethical thought, as complements or alternatives to approaches criticized as too atomistic, preoccupied by niche issues, and divorced from social realities. I do not pretend that this volume will settle debate about the priority our field, encompassing myriad roles and interests, implicitly assigns to various concerns. I would, however, note that many of the specific issues Lee calls out are topics of current discussion in humanistic, sociological, and policy-oriented scholarship on health. These include labor that may be obscured by romanticized conceptions of healthcare as a space where beneficence reigns, the uneven representation of racialized populations in research and unequal clinical experiences, and the influence of social conditions on health. Insofar as Lee’s Target article calls for active engagement with these issues, I doubt that it will be particularly controversial among mainstream bioethicists. But she takes a further step, setting forth a loose framework for navigating these issues. The fulcrum of this framework—what links the possibilities of gift and responsibility—is reciprocity. Unfortunately, Lee’s Target Article does not directly define the concept, although she distinguishes it from strict quid pro quo, which has inherent limitations with respect to unfolding research of a genetic nature. Mauss, drawing inspiration from tokens of generosity and mutual respect in hierarchical traditional societies, evoked the Arthurian Round Table as if to say these aristocratic virtues retain their value on more
Paired organ exchange can be used to circumvent living donor‐recipient ABO incompatibilities. Her... more Paired organ exchange can be used to circumvent living donor‐recipient ABO incompatibilities. Herein, we present the first case of successful liver paired exchange in North America. This 2‐way swap required 4 simultaneous operations: 2 living donor hepatectomies and 2 living donor liver transplants. A nondirected anonymous living donor gift initiated this domino exchange, alleviating an ABO incompatibility in the other donor‐recipient pair. With careful attention to ethical and logistical issues, paired liver exchange is a feasible option to expand the donor pool for incompatible living liver donor‐recipient pairs.
About 6,000 individuals participate in the U.S. transplant system as a living organ donor each ye... more About 6,000 individuals participate in the U.S. transplant system as a living organ donor each year. Organ donation (most commonly a kidney or part of liver) by living individuals is a unique procedure, where healthy patients undergo a major surgical operation without any direct functional benefit to themselves. In this article, the authors explore how the ideal of informed consent guides education and evaluation for living organ donation. The authors posit that informed consent for living organ donation is a process. Though the steps in this process are partially standardized through national health policy, they can be improved through institutional structures at the local, transplant center-level. Effective structures and practices aimed at supporting and promoting comprehensive informed consent provide more opportunities for candidates to ask questions about the risks and benefits of living donation and to opt out voluntarily Additionally, these practices could enable new ways of...
Uterine factor infertility (UFI) is a condition that affects approximately 1.5 million women arou... more Uterine factor infertility (UFI) is a condition that affects approximately 1.5 million women around the world. Advances in reproductive science have made it possible that uterine transplantation may be the first true treatment for women with UFI. While uterine transplantation is still in the experimental stages, the first successful live births from women who received a uterine transplant mark the real potential of this procedure. Although uterine transplant may offer an important new step for the management of women with UFI, it also poses important ethical questions that must be thoroughly considered and addressed before this procedure becomes a clinical reality. In this article, we review the major ethical issues associated with the study of and expected future clinical translation of uterine transplantation and propose a series of steps to reduce risks to all those involved in the process.
"In this commentary, we identify several ways in which process of registering people as organ don... more "In this commentary, we identify several ways in which process of registering people as organ donors in the United States departs from the conditions ordinarily thought to be requirements for autonomous medical decisions." We then outline three possible ways of reckoning with this departure.
Letter to the Editor, American Journal of Transplantation, with table. Suggests ways of improving... more Letter to the Editor, American Journal of Transplantation, with table. Suggests ways of improving informed consent documents used in connection with living donor organ transplantation.
Yale Journal of Health Policy, Law, and Ethics, 2008
This essay traces the history of the National Organ Transplant Act of 1984 (NOTA) from its social... more This essay traces the history of the National Organ Transplant Act of 1984 (NOTA) from its social and technological origins, through a moment of bipartisan legislative convergence, to the Act’s contentious implementation and revision. Congress enacted NOTA to address three perceived deficiencies in America’s loosely-knit system of organ allocation: a shortage of transplantable organs, a lack of coordination, and inadequate public financing (in comparison to the costlier alternative of dialysis). These problems came to a head when advances in immunosuppression enabled numerous patients to benefit from a given donor organ, uncomfortably enlarging the role of value judgments in organ allocation. In a morally and politically precarious situation, transplant programs’ reliance on private financial largesse was seen as a recipe for corruption and a threat to public acceptance of organ donation.
Legislators responded to diverse complaints by introducing measures to unify and strengthen the nation’s organ-sharing infrastructure. NOTA’s best-known provision, outlawing the exchange of “valuable consideration” for organs, represented a vision of system integrity. Congress overwhelmingly approved an Act that addressed egregious instances of waste and misaligned incentives, while leaving difficult, politically-charged questions to an appointed taskforce. This delegation of responsibility for organ allocation policies set a pattern for ongoing collaboration between public officials and quasi-governmental administrators under NOTA. The division of labor helps to explain disagreement about what, exactly, NOTA sought to accomplish and whether the allocation system has remained faithful to its envisioned mission.
A Death Retold: Jesica Santillan, The Bungled Transplant, and Paradoxes of Medical Citizenship, 2006
This book chapter, later expanded into the essay “E Pluribus Unos," turns a historical lens on th... more This book chapter, later expanded into the essay “E Pluribus Unos," turns a historical lens on the problem of public confidence in organ allocation in the U.S.—its theoretical construction, practical importance, and bureaucratic management. The shorter version originally appeared in A Death Retold, edited by Keith Wailoo, Julie Livingstone, and Peter Guarnaccia and published as part of the University of North Carolina Press's Studies in Social Medicine series.
A disabled elevator operator loses her job because it is disappearing from the national economy, ... more A disabled elevator operator loses her job because it is disappearing from the national economy, and she cannot find another suitable line of work. Should she receive Social Security disability benefits or unemployment insurance benefits? Does the answer to this question change if her inability to hold gainful employment is partly the result of illegal conduct by private parties, such as workplace safety violations or employment discrimination? Such problems in the implementation of administrative law have high enough stakes for individuals with disabilities to litigate. Courts, however, have not always reached a consistent application of the relevant statutes and regulations on the basis of either plain meaning or abstract logic. Under the tenets of judicial construction, when these interpretive methods prove inadequate, judges may look to inferred legislative intent.
This essay seeks interpretive guidance from the history of compromises, coalitions, and pronouncements giving rise to Social Security, the Americans with Disabilities Act, and the Ticket to Work and Work Incentives Improvement Act of 1999.
Perhaps surprisingly, a shared set of organizing ideas is recognizable in these disparate legislative initiatives. Among these core understandings are a social-contract conception of long-term employment, a functional understanding of disability, a goal of enlarging individuals’ self-determination through economic security, and a preference for rehabilitation and reemployment when practicable. I suggest that attention to these ideas could partly resolve a split among appellate courts in their handling of actual cases. At the same time, some complex and borderline cases are more appropriately left to the discretion of the executive agencies administering the programs, as the U.S. Supreme Court affirmed in Barnhart v. Thomas (2003).
This short comment is a solicited response to a longer essay by Michael Gross, titled “Why Treat ... more This short comment is a solicited response to a longer essay by Michael Gross, titled “Why Treat the Wounded?” Gross (no relation) sets forth a theory of medical justice based on a sharp distinction between civilian healthcare, where all are equally entitled to a basic “level” of care, and battlefield care, which he regards as a utilitarian exercise properly governed by a salvage ethos. He then applies this approach to various populations, markedly disapproving of special provisions for returned veterans. My response focuses on a different population, captive civilians and prisoners of war, to highlight some holes in his framework. In a world where medical care is necessarily specialized and delivered through concrete institutions, Gross’s universalistic principles do not specify which institutions are responsible for whom. For different individuals, the nation state may be one’s country, one’s employer, one’s health care provider, one’s custodian, one’s enemy. As long as this is the case, we need some account of the moral significance of these relationships. Also incompletely elaborated is the central notion of a “level” of medical care. When a nation has a high degree of control over environmental conditions (as with captive populations), might it not have different medical responsibilities than when a patient walks into the emergency room, because of differences in social context? If so, this suggests that how people are injured matters—casting doubt on Gross’s assumption that previous military service is irrelevant on the home front. As long as these crucial ambiguities in Gross’s framework remain unresolved, his account will remain unpersuasive.
"This short comment is a solicited response to Jonathan Moreno and Sam Berger’s essay, “Biotechno... more "This short comment is a solicited response to Jonathan Moreno and Sam Berger’s essay, “Biotechnology and the New Right: Neoconservatism’s Red Menace.” The essay’s authors appraise a school of thought, particularly influential during the George W. Bush administration, which they dub the “neoconservative” critique of biotechnology. Moreno and Berger treat this critique as a sort of inchoate Marxian analysis, espoused by conservative commentators who are uneasy about the social consequences of technological change but unwilling to take their concerns to their logical political and economic conclusions. Nonetheless, Moreno and Berger, as self-styled progressives, applaud the neoconservatives for refocusing policy discussion on the ends of biotechnology in society, rather than the mechanics of regulatory procedures.
Moreno and Berger have identified an important intellectual development in the emergence of a distinct new school of conservative thought about biotechnology. My comment challenges their genealogy and the normative cues they would take from the neoconservative school. In short, I read the neoconservative critique as a species of identity politics aiming to police the human identity. Although the movement’s expositors make use of Marxian terms such as “alienation,” these commentators also draw extensively on Aristotelian virtue ethics, Judeo-Christian religious themes such as the divine image, and late twentieth-century ideas about representation and belonging. Such ideas are historically- and culturally-situated, even if they have stood the test of time. People of any ideological stripe should appreciate that (1) our ability to shape distant “ends” is constrained by the limits of foresight and (2) self-government is a process, not a singular event. Hence, in a liberal democracy such as ours, the development and regulation of technology should be tentative, pluralistic, unpredictable, and unending."
The discipline of bioethics aims to resolve moral dilemmas in medicine according to a set of cons... more The discipline of bioethics aims to resolve moral dilemmas in medicine according to a set of consensus principles. For example, the principle of autonomy is thought to require individuals’ consent for research participation. Often, this approach does not indisputably point to one right answer because principles conflict and are differently valued by different people. In Against Bioethics (2005), Jonathan Baron argues that the methodology of “decision analysis” would yield better results than balancing or prioritizing among principles. This short comment responds to one of Baron’s illustrations, which would condition the duty to obtain consent on a sort of poll of individual preferences. I note that the consent requirement is ultimately backstopped by the courts because it is rooted in legal theories of negligence and battery. The strict, straightforward approach reflects a kind of rule-based utilitarianism that courts are comfortable and competent at implementing. Without a similar, institutionalized framework for distinguishing legitimate applications of decision analysis from abuses, Baron’s case is moot.
Yale Journal of Health Policy, Law, and Ethics, 2005
This issue of the Yale Journal of Health Policy, Law and Ethics marks our fifth year of publicati... more This issue of the Yale Journal of Health Policy, Law and Ethics marks our fifth year of publication. Our anniversary is a time to celebrate, but also a time for reflection. The past half-decade has brought dramatic developments in medicine and health policy-from the ...
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Papers by Jed Adam Gross
Legislators responded to diverse complaints by introducing measures to unify and strengthen the nation’s organ-sharing infrastructure. NOTA’s best-known provision, outlawing the exchange of “valuable consideration” for organs, represented a vision of system integrity. Congress overwhelmingly approved an Act that addressed egregious instances of waste and misaligned incentives, while leaving difficult, politically-charged questions to an appointed taskforce. This delegation of responsibility for organ allocation policies set a pattern for ongoing collaboration between public officials and quasi-governmental administrators under NOTA. The division of labor helps to explain disagreement about what, exactly, NOTA sought to accomplish and whether the allocation system has remained faithful to its envisioned mission.
This essay seeks interpretive guidance from the history of compromises, coalitions, and pronouncements giving rise to Social Security, the Americans with Disabilities Act, and the Ticket to Work and Work Incentives Improvement Act of 1999.
Perhaps surprisingly, a shared set of organizing ideas is recognizable in these disparate legislative initiatives. Among these core understandings are a social-contract conception of long-term employment, a functional understanding of disability, a goal of enlarging individuals’ self-determination through economic security, and a preference for rehabilitation and reemployment when practicable. I suggest that attention to these ideas could partly resolve a split among appellate courts in their handling of actual cases. At the same time, some complex and borderline cases are more appropriately left to the discretion of the executive agencies administering the programs, as the U.S. Supreme Court affirmed in Barnhart v. Thomas (2003).
Moreno and Berger have identified an important intellectual development in the emergence of a distinct new school of conservative thought about biotechnology. My comment challenges their genealogy and the normative cues they would take from the neoconservative school. In short, I read the neoconservative critique as a species of identity politics aiming to police the human identity. Although the movement’s expositors make use of Marxian terms such as “alienation,” these commentators also draw extensively on Aristotelian virtue ethics, Judeo-Christian religious themes such as the divine image, and late twentieth-century ideas about representation and belonging. Such ideas are historically- and culturally-situated, even if they have stood the test of time. People of any ideological stripe should appreciate that (1) our ability to shape distant “ends” is constrained by the limits of foresight and (2) self-government is a process, not a singular event. Hence, in a liberal democracy such as ours, the development and regulation of technology should be tentative, pluralistic, unpredictable, and unending."
Legislators responded to diverse complaints by introducing measures to unify and strengthen the nation’s organ-sharing infrastructure. NOTA’s best-known provision, outlawing the exchange of “valuable consideration” for organs, represented a vision of system integrity. Congress overwhelmingly approved an Act that addressed egregious instances of waste and misaligned incentives, while leaving difficult, politically-charged questions to an appointed taskforce. This delegation of responsibility for organ allocation policies set a pattern for ongoing collaboration between public officials and quasi-governmental administrators under NOTA. The division of labor helps to explain disagreement about what, exactly, NOTA sought to accomplish and whether the allocation system has remained faithful to its envisioned mission.
This essay seeks interpretive guidance from the history of compromises, coalitions, and pronouncements giving rise to Social Security, the Americans with Disabilities Act, and the Ticket to Work and Work Incentives Improvement Act of 1999.
Perhaps surprisingly, a shared set of organizing ideas is recognizable in these disparate legislative initiatives. Among these core understandings are a social-contract conception of long-term employment, a functional understanding of disability, a goal of enlarging individuals’ self-determination through economic security, and a preference for rehabilitation and reemployment when practicable. I suggest that attention to these ideas could partly resolve a split among appellate courts in their handling of actual cases. At the same time, some complex and borderline cases are more appropriately left to the discretion of the executive agencies administering the programs, as the U.S. Supreme Court affirmed in Barnhart v. Thomas (2003).
Moreno and Berger have identified an important intellectual development in the emergence of a distinct new school of conservative thought about biotechnology. My comment challenges their genealogy and the normative cues they would take from the neoconservative school. In short, I read the neoconservative critique as a species of identity politics aiming to police the human identity. Although the movement’s expositors make use of Marxian terms such as “alienation,” these commentators also draw extensively on Aristotelian virtue ethics, Judeo-Christian religious themes such as the divine image, and late twentieth-century ideas about representation and belonging. Such ideas are historically- and culturally-situated, even if they have stood the test of time. People of any ideological stripe should appreciate that (1) our ability to shape distant “ends” is constrained by the limits of foresight and (2) self-government is a process, not a singular event. Hence, in a liberal democracy such as ours, the development and regulation of technology should be tentative, pluralistic, unpredictable, and unending."