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The ethics of uterus transplantation: Moral challenges and recommendations for progress

Chapter by: Caplan, Arthur L.; Parent, Brendan; Patrizio, Pasquale
in: Uterus Transplantation by
[S.l.] : Springer International Publishing, 2019
pp. 11-23
ISBN: 9783319941615
CID: 4508222

Augment Social Support for Transplant, Do Not Penalize Its Absence [Comment]

Parent, Brendan
PMID: 31661419
ISSN: 1536-0075
CID: 4162952

Self-Inflicted Gunshot Wound as a Consideration in the Patient Selection Process for Facial Transplantation

McQuinn, Michelle W; Kimberly, Laura L; Parent, Brendan; Diaz-Siso, J Rodrigo; Caplan, Arthur L; Blitz, Aileen G; Rodriguez, Eduardo D
Facial transplantation is emerging as a therapeutic option for self-inflicted gunshot wounds. The self-inflicted nature of this injury raises questions about the appropriate role of self-harm in determining patient eligibility. Potential candidates for facial transplantation undergo extensive psychosocial screening. The presence of a self-inflicted gunshot wound warrants special attention to ensure that a patient is prepared to undergo a demanding procedure that poses significant risk, as well as stringent lifelong management. Herein, we explore the ethics of considering mechanism of injury in the patient selection process, referring to the precedent set forth in solid organ transplantation. We also consider the available evidence regarding outcomes of individuals transplanted for self-inflicted mechanisms of injury in both solid organ and facial transplantation. We conclude that while the presence of a self-inflicted gunshot wound is significant in the overall evaluation of the candidate, it does not on its own warrant exclusion from consideration for a facial transplantation.
PMID: 31298191
ISSN: 1469-2147
CID: 4009892

Nature beyond control: how expectations should inform decisions about human germline engineering

Parent, Brendan; Turi, Angela
In the ongoing discussion about the risks of reproductive human germline modification, scant attention has been paid to whether it could be reconciled with theories of psychological well-being. Even if safety and feasibility challenges could be overcome and germline engineering technology could be implemented in ways that avoid exacerbating social inequality, we would still have to question whether germline modification would promote circumstances that lead to better psychological experiences for parents, society, and the genetically edited person. This paper posits that germline engineering would produce expectations of being able to control the manifestation of an individual's characteristics, which will inevitably be upset by our limited understanding of how genes interact with each other and with the environment. Drawing on self-discrepancy and relative deprivation theories, it is suggested that both editing and being edited could lead to unmet expectations and thus negative emotional states that would offset benefits of successful intended genetic changes.
PMID: 31313011
ISSN: 1573-7330
CID: 3977872

Physician Attitudes Toward Living Kidney Donation

Trachtman, Howard; Parent, Brendan; Kirshenbaum, Ari; Caplan, Arthur
Background: Compared to dialysis, living kidney donation has a greater chance of restoring health and is associated with better outcomes than deceased kidney donation. Although physicians advocate for this treatment, it is uncertain how they would act as potential living kidney donors or recipients. Methods: We surveyed 104 physicians, pediatric, and internal medicine nephrologists, to ascertain their attitudes toward living donation. Results: Among surveyed nephrologists, there was nearly universal support for living kidney donation as a viable medical option, and nearly all of them would support a healthy and medically cleared patient who wishes to participate. Although support was still strong, nephrologists were significantly less likely to support their friends and relatives participating in living kidney donation, and their support declined further for friends and relatives donating to nonrelatives. Conclusion: Our findings suggest the need to more deeply examine physician-perceived risks involved in serving as a living kidney donor. Based on differences in surveyed nephrologist attitudes regarding donation to and from loved ones versus nonrelatives, we suggest that physicians should give careful consideration to how they describe the risks of living donation to potential donors.
ISI:000458788300013
ISSN: 1526-9248
CID: 3693712

Emerging Ethical Challenges Raised by the Evolution of Vascularized Composite Allotransplantation

Caplan, Arthur L; Parent, Brendan; Kahn, Jeffrey; Dean, Wendy; Kimberly, Laura L; Andrew Lee, W P; Rodriguez, Eduardo D
BACKGROUND:Despite early skepticism, the field of vascularized composite allotransplantation (VCA) has demonstrated feasibility. The ethics of VCA have moved past doubts about the morality of attempting such transplant to how to conduct them ethically. METHODS:Leaders of each program performing and/or evaluating VCA in the United States were invited to participate in a working group to assess the state and future of VCA ethics and policy. Four meetings were held over the course of 1 year to describe key challenges and potential solutions. RESULTS:Working group participants concluded that VCA holds great promise as treatment for patients with particular injuries or deficits, but the field faces unique challenges to adoption as standard of care, which can only be overcome by data sharing and standardization of evaluation and outcome metrics. CONCLUSIONS:Adequate attention must be given to concerns including managing the uniquely intense physician-patient relationship, ethical patient selection, ensuring patients have adequate representation, informing and earning the trust of the public for donation, standardizing metrics for success, and fostering an environment of data sharing. These steps are critical to transitioning VCA from research to standard of care, and to its insurance coverage inclusion.
PMID: 30300280
ISSN: 1534-6080
CID: 3334912

Vascularized Composite Allotransplantation: Alternatives and Catch-22s

Diaz-Siso, J Rodrigo; Borab, Zachary M; Plana, Natalie M; Parent, Brendan; Stranix, John T; Rodriguez, Eduardo D
Technical success has been achieved in several forms of vascularized composite allotransplantation, including hand, face, penis, and lower extremity. However, the risks of lifelong immunosuppression have limited these procedures to a select group of patients for whom nontransplant alternatives have resulted in unsatisfactory outcomes. Recent reports of facial allograft failure, and subsequent reconstruction using autologous tissues, have reinforced the idea that a surgical contingency plan must be in place in case this devastating complication occurs. Interestingly, backup plans in the setting of vascularized composite allotransplantation consist of the nontransplant alternatives that were deemed suboptimal in the first place. Moreover, these options may have been exhausted before transplantation, and may therefore be limited in the case of allograft loss or reamputation. In this article, the authors describe the surgical and nonsurgical alternatives to hand, face, penis, and lower extremity transplantation. In addition, the authors explore the ethical implications of approaching vascularized composite allotransplantation as a "last resort" or as a "high-risk, improved-outcome" procedure, focusing on whether nontransplant options eventually preclude vascularized composite allotransplantation, or whether vascularized composite allotransplantation limits future nontransplant reconstruction.
PMID: 30511987
ISSN: 1529-4242
CID: 3520282

Ethical Issues in Gender-Affirming Care for Youth

Kimberly, Laura L; Folkers, Kelly McBride; Friesen, Phoebe; Sultan, Darren; Quinn, Gwendolyn P; Bateman-House, Alison; Parent, Brendan; Konnoth, Craig; Janssen, Aron; Shah, Lesha D; Bluebond-Langner, Rachel; Salas-Humara, Caroline
Transgender and gender-nonconforming (TGNC) youth who suffer from gender dysphoria are at a substantially elevated risk of numerous adverse physical and psychosocial outcomes compared with their cisgender peers. Innovative treatment options used to support and affirm an individual's preferred gender identity can help resolve gender dysphoria and avoid many negative sequelae of nontreatment. Yet, despite advances in these relatively novel treatment options, which appear to be highly effective in addressing gender dysphoria and mitigating associated adverse outcomes, ethical challenges abound in ensuring that young patients receive appropriate, safe, affordable treatment and that access to this treatment is fair and equitable. Ethical considerations in gender-affirming care for TGNC youth span concerns about meeting the obligations to maximize treatment benefit to patients (beneficence), minimizing harm (nonmaleficence), supporting autonomy for pediatric patients during a time of rapid development, and addressing justice, including equitable access to care for TGNC youth. Moreover, although available data describing the use of gender-affirming treatment options are encouraging, and the risks of not treating TGNC youth with gender dysphoria are evident, little is known about the long-term effects of both hormonal and surgical interventions in this population. To support ethical decision-making about treatment options, we encourage the development of a comprehensive registry in the United States to track long-term patient outcomes. In the meantime, providers who work with TGNC youth and their families should endeavor to offer ethically sound, patient-centered, gender-affirming care based on the best currently available evidence.
PMID: 30401789
ISSN: 1098-4275
CID: 3520072

The Public Face of Transplantation: The Potential of Education to Expand the Face Donor Pool

Plana, Natalie M; Kimberly, Laura L; Parent, Brendan; Khouri, Kimberly S; Diaz-Siso, J Rodrigo; Fryml, Elise M; Motosko, Catherine C; Ceradini, Daniel J; Caplan, Arthur; Rodriguez, Eduardo D
BACKGROUND:Despite the growing success of facial transplantation, organ donor shortages remain challenging. Educational health campaigns can effectively inform the general public and institute behavioral modifications. A brief educational introduction to facial transplantation may positively influence the public's position on facial donation. METHODS:The authors anonymously surveyed 300 participants, gathering basic demographic information, donor registration status, awareness of facial transplantation, and willingness to donate solid organs and facial allografts. Two-hundred of these participants were presented an educational video and subsequently resurveyed on facial donation. Factorial parametric analyses were performed to compare exposure responses before and after watching video exposure. RESULTS:Among participants completing the survey alone (control group), 49 percent were registered donors, 78 percent reported willingness to donate solid organs, and 52 percent reported willingness to donate facial allograft. Of participants who watched the video (video group) 52 percent were registered; 69 and 51 percent were willing to donate solid organs and face, respectively. Following educational intervention, 69 percent of participants in the video group reported willingness to donate facial tissue, an 18 percent increase (p < 0.05), that equated to those willing to donate solid organs. The greatest increase was observed among younger participants (23 percent); women (22 percent); Jewish (22 percent), Catholic (22 percent), and black/African American (25 percent) participants; and respondents holding a higher degree. No significant differences according to gender or ethnicity were observed. CONCLUSION/CONCLUSIONS:Educational interventions hold much promise for increasing the general public's awareness of facial transplantation and willingness to participate in donation of facial allografts.
PMID: 29280879
ISSN: 1529-4242
CID: 2895412

Transplant eligibility for patients with affective and psychotic disorders: a review of practices and a call for justice

Cahn-Fuller, Katherine L; Parent, Brendan
BACKGROUND:The scarcity of human organs requires the transplant community to make difficult allocation decisions. This process begins at individual medical centers, where transplant teams decide which patients to place on the transplant waiting list. Each transplant center utilizes its own listing criteria to determine if a patient is eligible for transplantation. These criteria have historically considered preexisting affective and psychotic disorders to be relative or absolute contraindications to transplantation. While attitudes within the field appear to be moving away from this practice, there is no data to confirm that eligibility criteria have changed. MAIN BODY/UNASSIGNED:There are no nationwide guidelines detailing the manner in which affective and psychotic disorders should impact transplant eligibility. Individual transplant centers thus form their own transplant eligibility criteria, resulting in significant inter-institution variability. Data from the 1990s indicates that the majority of transplant programs considered certain psychiatric illnesses, such as active schizophrenia, to be absolute contraindications to transplantation. A review of literature reveals that no comprehensive data has been collected on the topic since that time. Furthermore, the limited data available about current practices suggests that psychiatric illness continues to be viewed as a contraindication to transplantation at some transplant centers. In light of this finding, we review psychiatric literature that examines the impact of affective and psychotic disorders on transplant outcomes and conclude that the presence of these disorders is not an accurate predictor of transplant success. We then discuss the requirements of justice as they relate to the creation of a just organ allocation system. CONCLUSION/CONCLUSIONS:We conclude that transplant eligibility criteria that exclude patients with affective and psychotic disorders on the basis of their psychiatric diagnosis alone are unjust. Just listing criteria must incorporate only those factors that have a causative effect on posttransplant morbidity and mortality. Justice also demands that we eliminate current inter-institution practice variations in favor of national transplant eligibility criteria. Given the limited data available about current practices, we call for an updated study investigating the manner in which affect and psychotic disorders impact transplant eligibility determinations.
PMCID:5721543
PMID: 29216883
ISSN: 1472-6939
CID: 2838032