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Vascularized Composite Allotransplantation in a Post-COVID-19 Pandemic World
Ramly, Elie P; Berman, Zoe P; Diep, Gustave K; Alfonso, Allyson R; Kimberly, Laura L; Rodriguez, Eduardo D
PMID: 32541532
ISSN: 1529-4242
CID: 4514742
Perceptions of Quality of Life among Face Transplant Recipients: A Qualitative Content Analysis
Greenfield, Jason A; Kimberly, Laura L; Berman, Zoe P; Ramly, Elie P; Alfonso, Allyson R; Lee, Olive; Diep, Gustave K; Rodriguez, Eduardo D
The aim of facial transplantation (FT) was to enhance quality of life (QoL) for individuals living with severe facial disfigurement. Yet QoL has proved challenging to assess, as the field lacks a unified approach for incorporating FT recipients' perspectives into meaningful QoL measures. In this study, we review FT recipients' self-reported QoL through a qualitative analysis of publicly available posttransplant interviews to identify the aspects of QoL they report as meaningful.
PMCID:7489701
PMID: 32983761
ISSN: 2169-7574
CID: 4651652
Equitable access to ectogenesis for sexual and gender minorities
Kimberly, Laura L; Sutter, Megan E; Quinn, Gwendolyn P
As the technology for ectogenesis continues to advance, the ethical implications of such developments should be thoroughly and proactively explored. The possibility of full ectogenesis remains hypothetical at present, and myriad concerns regarding the safety and efficacy of the technology must be evaluated and addressed, while pressing moral considerations should be fully deliberated. However, it is conceivable that the technology may become sufficiently well established in the future and that eventually full ectogenesis might be deemed ethically acceptable as a reproductive alternative to gestation within a human womb under certain circumstances. If the safety and efficacy of full ectogenesis are established, if ethical dilemmas are sufficiently well addressed, and if the technology is offered as a reproductive option to cisgender heterosexual individuals or couples desiring to become parents, there is a moral obligation grounded in social justice to ensure that full ectogenesis be made available to individuals or couples identifying as members of sexual- or gender-minority groups who likewise seek to pursue parenthood. We examine the history of access to current family-building options, including assisted reproductive technology, surrogacy and adoption, for these populations and conclude that in the absence of robust empirical evidence suggesting an increased risk of harm to children of individuals and couples who identify as members of sexual- or gender-minority groups, equitable access to ectogenesis as a pathway to parenthood for sexual and gender minorities must be assured as a matter of reproductive justice.
PMID: 32050295
ISSN: 1467-8519
CID: 4304482
The ethics of testing and research of manufactured organs on brain-dead/recently deceased subjects
Parent, Brendan; Gelb, Bruce; Latham, Stephen; Lewis, Ariane; Kimberly, Laura L; Caplan, Arthur L
Over 115 000 people are waiting for life-saving organ transplants, of whom a small fraction will receive transplants and many others will die while waiting. Existing efforts to expand the number of available organs, including increasing the number of registered donors and procuring organs in uncontrolled environments, are crucial but unlikely to address the shortage in the near future and will not improve donor/recipient compatibility or organ quality. If successful, organ bioengineering can solve the shortage and improve functional outcomes. Studying manufactured organs in animal models has produced valuable data, but is not sufficient to understand viability in humans. Before risking manufactured organ experimentation in living humans, study of bioengineered organs in recently deceased humans would facilitate evaluation of the function of engineered tissues and the complex interactions between the host and the transplanted tissue. Although such studies do not pose risk to human subjects, they pose unique ethical challenges concerning the previous wishes of the deceased, rights of surviving family members, effective operation and fair distribution of medical services, and public transparency. This article investigates the ethical, legal and social considerations in performing engineered organ research on the recently deceased.
PMID: 31563872
ISSN: 1473-4257
CID: 4115892
How to Integrate Lived Experience Into Quality-of-Life Assessment in Patients Considering Facial Transplantation
Kimberly, Laura L; Alfonso, Allyson R; Ramly, Elie P; Kantar, Rami S; Caplan, Arthur L; Rodriguez, Eduardo D
Facial transplantation has gained increasing acceptance as a treatment option to improve quality of life (QoL) for persons suffering from severe facial disfigurement. Despite its growth, the field has yet to establish a consistent approach to assessing QoL in face transplant candidates and recipients that includes integration of meaningful patient-reported outcomes. The published literature suggests that face transplant programs currently use a wide variety of assessment tools and strategies. Moreover, confusion remains as to how best to weigh patients' lived experiences and incorporate them into QoL assessments. Qualitative research can illuminate the dimensions of QoL that are meaningful to face transplant candidates and recipients. Coupled with collaboration and data sharing across face transplant programs, qualitative research will help to bring conceptual clarity and transparency to the assessment process.
PMID: 31742547
ISSN: 2376-6980
CID: 4220822
Uterus transplantation in women who are genetically XY
Sampson, Amani; Kimberly, Laura L; Goldman, Kara N; Keefe, David L; Quinn, Gwendolyn P
Uterus transplantation is an emerging technology adding to the arsenal of treatments for infertility; specifically the only available treatment for uterine factor infertility. Ethical investigations concerning risks to uteri donors and transplant recipients have been discussed in the literature. However, missing from the discourse is the potential of uterus transplantation in other groups of genetically XY women who experience uterine factor infertility. There have been philosophical inquiries concerning uterus transplantation in genetically XY women, which includes transgender women and women with complete androgen insufficiency syndrome. We discuss the potential medical steps necessary and associated risks for uterus transplantation in genetically XY women. Presently, the medical technology does not exist to make uterus transplantation a safe and effective option for genetically XY women, however this group should not be summarily excluded from participation in trials. Laboratory research is needed to better understand and reduce medical risk and widen the field to all women who face uterine factor infertility.
PMID: 30803984
ISSN: 1473-4257
CID: 3698282
Comprehensive Assessment of Vascularized Composite Allotransplantation Patient-Oriented Online Resources
Noel, Daphney Y; Kimberly, Laura L; DeMitchell-Rodriguez, Evellyn M; Levy-Lambert, Dina; Ramly, Elie P; Alfonso, Allyson R; Jacoby, Adam; Gelb, Bruce E; Diaz-Siso, J Rodrigo; Kantar, Rami S; Rodriguez, Eduardo D
INTRODUCTION/BACKGROUND:Online resources have become a major source of medical information for the general public. To date, there has not been an assessment of patient-oriented online resources for face and upper extremity transplantation candidates and patients. The goal of this study is to perform a comprehensive assessment of these resources. METHODS:Our analysis relied on 2 dimensions: comprehensiveness and readability. Comprehensiveness was evaluated using 14 predetermined variables. Readability was evaluated using 8 different readability scales through the Readability Studio Professional Edition Software (Oleander Software, Ltd, Vandalia, Ohio). Data were also collected from solid organ transplantation (SOT), specifically kidney and liver, programs for comparison. RESULTS:Face and upper extremity transplantation programs were significantly more likely to list exclusion criteria (73.9% vs 41.2%; P = 0.02), the need for life-long immunosuppression (87.0% vs 58.8%; P = 0.02), and benefits of transplantation (91.3% vs 61.8%; P = 0.01) compared with SOT programs. The average readability level of online resources by all face and upper extremity transplantation programs exceeded the sixth grade reading level recommended by the National Institutes of Health and the American Medical Association. The average reading grade level of online resources by these programs was also significantly higher than those of SOT with both exceeding the recommended reading level (13.95 ± 1.55 vs 12.60 ± 1.65; P = 0.003). CONCLUSIONS:Future efforts in face and upper extremity transplantation should be directed toward developing standardized, comprehensive, and intelligible resources with high-quality content and simple language.
PMID: 31232818
ISSN: 1536-3708
CID: 3963522
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
High Life Satisfaction: Exploring the Role of Health, Social Integration and Perceived Safety among Mexican Midlife and Older Adults
Camacho, David; Lee, Yookyong; Bhattacharya, Anindita; Vargas, Laura X; Kimberly, Laura; Lukens, Ellen
We sought to investigate the relationship of high life satisfaction with important physical health, mental health, social integration and perceived safety factors among midlife and older Mexican adults. We examined 2,200 midlife and older adults (aged 50-101 years) from the Mexican arm of the Study on global AGEing and adult health (SAGE) and used binary logistic regression models to identify key factors associated with high LSA. Our final logistic regression model revealed self-rated health, affect, interpersonal activities and perceived safety on street to be significantly associated with high life satisfaction. Results from this study add to the nascent literature on subjective well-being of midlife and older Mexicans. Although social work with older adults is not well established in Mexico, researchers and practitioners should collaborate on the development and implementation of social worker-led strategies for prevention and intervention to enhance well-being among midlife and older Mexicans.
PMID: 31140947
ISSN: 1540-4048
CID: 5012862
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