The Berman Institute will be well represented at the 24th annual meeting of the American Society for Bioethics and Humanities (ASBH), “Reimagining and Claiming the Role of Public Bioethics and Health Humanities,” with a group of faculty, fellows, and students scheduled to present. The full program is available online. Follow the meeting on twitter using #ASBH22
Preview our diverse presentations below by:
All times listed are Eastern.
Protecting Pediatric Transgender Patient Records from Unethical Child Abuse Investigations
Panel Session: Sex, Gender, and Vulnerability: Protecting Minor Patients
As of March 2022, officials in the state of Texas have begun to treat minors’ access to gender affirming care (GAC) as child abuse and to target parents of transgender children for investigation by the Department of Family and Protective Services. Although legal advocates have already sued to block such investigations in Texas, policymakers in other states have proposed to take similar actions. These policies demonstrate some of the risks of collecting data about transgender patients, risks which historically were managed by clinicians who intentionally kept references to GAC out of the medical record. Protecting trans kids and their families requires special treatment of their medical records, especially when those records are kept by pediatric gender clinics that are likely to be targeted by state actors who conflate GAC with child abuse.This presentation will demonstrate that as in other areas of medicine in which ethical and legal obligations frequently conflict (e.g., care for undocumented patients), care for transgender children and adolescents may require that clinicians and institutions develop shadow pathways to ensure the safety of patients from the potential risks of disclosure sought by the state. Processes and technologies that silo adolescent mental and sexual health information from other medical records can be adapted for management of GAC information, but are not in themselves sufficient protections. Pediatric gender clinics and their institutions must further prepare to legally defend such information and to anticipate challenges associated with electronic health record access.
Panel Session: Diversity, Disparity, and Inclusion
As of March 2022, officials in the state of Texas have begun to treat minors’ access to gender affirming care (GAC) as child abuse and to target parents of transgender children for investigation by the Department of Family and Protective Services. Although legal advocates have already sued to block such investigations in Texas, policymakers in other states have proposed to take similar actions. These policies demonstrate some of the risks of collecting data about transgender patients, risks which historically were managed by clinicians who intentionally kept references to GAC out of the medical record. Protecting trans kids and their families requires special treatment of their medical records, especially when those records are kept by pediatric gender clinics that are likely to be targeted by state actors who conflate GAC with child abuse.This presentation will demonstrate that as in other areas of medicine in which ethical and legal obligations frequently conflict (e.g., care for undocumented patients), care for transgender children and adolescents may require that clinicians and institutions develop shadow pathways to ensure the safety of patients from the potential risks of disclosure sought by the state. Processes and technologies that silo adolescent mental and sexual health information from other medical records can be adapted for management of GAC information, but are not in themselves sufficient protections. Pediatric gender clinics and their institutions must further prepare to legally defend such information and to anticipate challenges associated with electronic health record access.
Visit the Berman Institute table in the Networking Hall – Booth 224
Panel Session: Issues in Allocation Equity
Introduction: Pulmonary function tests (PFTs) are fundamental tools for evaluating respiratory disease, but their interpretation currently relies upon race-specific equations (RSEs), which normalize observed lower average lung function among Black than White individuals. While using RSEs has recently come under ethical scrutiny, little is known about their potential impact on access to care and health disparities. RSEs may bias access to lung transplants because lung allocation score (LAS), the primary determinant of organ waitlist priority, incorporates PFTs.Methods: We developed a cohort from the Scientific Registry for Transplant Recipients and included all patients of self-reported Black or White race with PFTs available who were listed for lung transplant in the U.S. from 2006-2015 due to common diagnoses. We estimated the LAS with a race-specific approach using RSEs and with a proposed race-neutral approach. Differences in LAS were compared by race. Higher LAS indicates higher transplant priority.Results: Among 4130 patients, 310 (7.5%) were Black and 3820 (92.5%) White. Using RSEs, the mean LAS was greater among Black versus White patients (32.7 vs 31.7, p<0.001). A race-neutral approach resulted inmean LAS change of +0.70 among Black patients and -0.47 among White patients (p<0.001).Conclusion: Compared to a race-neutral approach, RSEs result in lower priority for lung transplant for Black compared to White patients. As such RSEs may contribute to inequitable care, raising additional distributive justice-based concerns to using RSEs. Our findings demonstrate the need for more work to understand the impact of race-based algorithms on equitable healthcare delivery.
Co-Authors: Jeremy Sugarman, MD, MPH, MA; Kadija Ferryman, PhD; Christian Merlo, MD, MPH; Meredith McCormack, MD, MHS
Flash Presentation: Issues Highlighted by the COVID-19 Pandemic
Advances in our understanding of host genomics play an important role in precision medicine and precision public health approaches to the management and control of infectious disease outbreaks, such as COVID-19. During future outbreaks, it is likely that host genomic information may be used in population-wide screening programs to stratify individuals based on their predicted genetic risk in addition to other non-genomic risk factors. This use of genomic information raises several ethical, legal, and social implications in the infectious disease context and needs to be evaluated through a public health ethics lens. Currently, there are very few normative analyses that have explored the adequacy of using existing public health ethics frameworks in this precision public health context.This study will focus on three key public health ethics frameworks: (1) ethical framework for public health by Nancy Kass, (2) general moral considerations of public health ethics by Childress et al., and (3) stewardship model by the Nuffield Council on Bioethics. The study will normatively analyze whether and how these three frameworks should inform the use of population-wide host genomic screening during an infectious disease outbreak. It will identify whether or not these frameworks adequately capture the ethical issues of such an intervention. The findings will be used to recommend additional ethical principles or a different approach that may need to be considered for evaluating whether or not public health authorities should implement these infectious disease-related host genomic screening programs.
More than Freedom: The ethics of Decarceration without Sufficient Structural Support
Panel Session: Treatment of Patients with Mental Health Issues
People enter the criminal legal system with complex and intersecting needs that are often the product of long term, concentrated structural disadvantage. The carceral state is ill equipped and inappropriately suited for handling these needs, but in our neoliberal era of disinvestment from social welfare provision and sustained community support, they have become de facto safety nets of last resort. We see evidence of this when we confront the reality that Los Angeles County Jail is the largest psychiatric treatment facility in the country, or that in Philadelphia, a court order can be the only way to access guaranteed, repeated, inpatient drug treatment. In other words, the carceral state plays a larger role in our social safety net than we often like to recognize. This paper argues first that this carceral safety net cannot simply be removed in a vacuum without presenting serious ethical challenges. It then argues second that we need an ethical framework for jurisdictions navigating decarceration at the local level. In order to address the intersecting crises of mass incarceration, addiction, violence, and unemployment in comprehensive ways that promote community health, we need to acknowledge—and intervene upon—the role that the criminal legal system has and currently plays in basic health and social service provision. Only when we recognize the complex and contradictory functions currently served by carceral systems of oppression and control can we ethically navigate replacing these services with more equitable, heath promoting, community-based services.
Moderator: Kadija Ferryman, PhD
At the turn of the 20th century, the eugenics movement and the early field of Mendelian genetics were combined by some thinkers to establish a mistaken concept of racial hierarchy and superiority. Believing the eugenic science to be correct, scientists, physicians, politicians, theologians, and lawyers rallied around the call to improve the American stock, bringing the hype to the general public by way of academic courses, better baby competitions, and print ads. By mid-century, most scientists rejected the “science” of eugenics as overly simplistic. Not all people followed in this belief, however, and today we still see remnants of the eugenical thinking common then. Worsening the situation, advances in genomics (e.g., polygenic scores) have emboldened fringe thinkers in their claims to racial and other kinds of superiority, centered on an incorrect belief of genetic essentialism. With radicalization, these beliefs not uncommonly are cited as a reason for violent attacks on minoritized groups.
We address various ethical, legal, and social concerns surrounding genetic research and the potential weaponization of that research against minoritized people. What responsibilities do researchers have to protect their work from such hijackings? How should findings be communicated to the general public? Should there be restrictions on the sorts of studies undertaken by scientists? Should regulations be imposed on large scientific (genetic) databases?
Making Families, Choosing Race: Ethical Issues in Sperm Donor Selection
Panel Session: Moving Towards Equity in Reproduction and Race
The notion that, “To create a baby of one’s own race, with or without technological assistance, is considered so natural as to not even constitute a choice,” is an unspoken assumption in the realm of gamete donation (Russell 2015, 605). Yet, due to structural constraints or recipients’ unique backgrounds, such “racial matching” of gamete donor and recipient is not always possible. This paper focuses on the experience of sperm donor selection for interracial lesbian couples. Utilizing longitudinal interviews conducted before and after the birth of their donor conceived child, this paper uncovers the tensions these couples encountered when attempting to balance their desires for racial matching with their intent to achieve a biological sibling kinship. In facing a trade-off between one or the other of these priorities, this tension reveals not only how biological framings of race and kinship continue to structure decisions about family formation, but also the limits of diversity in the marketplace in which greater inclusion often does not—and in this instance, cannot—offer a path to replicating idealized models of the family. This paper challenges marketplace logics of choice and selection, rather than just past histories of exclusion, to imagine what greater equity would look like for the families that could be imagined and created through the utilization of reproductive technologies. Additionally, this paper asks whether there is an entitlement to having a child of one’s same race through the use of assisted reproductive technologies.
Panel Session: Fair and inclusive research practices for alternative clinical trials during public health emergencies in resource limited settings
In the wake of several infectious disease outbreaks during the past two decades – including COVID-19 and Ebola – there has been increasing use of alternative clinical trial designs (such as adaptive trials) in public health emergency contexts. The use of these research models, predominantly conducted through international partnership between two or more research institutions, has accelerated identification of important aspects of disease transmission, prevention, and treatment that directly impact both global clinical knowledge and local public health policy. However, these methods and partnership models also introduce novel ethical questions around their design and use, particularly within the context of limited-resource settings. In this project, we conceptualized the ethical considerations around use of alternative clinical trial designs during public health emergencies with a focus on fair and inclusive research practices within complex international research partnerships in resource-limited settings. A deliberative process was used to identify and categorize themes into a conceptual model that critically analyzes the ethical tensions between scientific knowledge production, protection of research participants, and research-related obligations to the community during a public health emergency. We address issues including informed consent, clinical equipoise, obligations to local research capacity and ethical oversight, and the use alternative clinical trial research protocols within partnerships that have discordant financial and material resources. Identifying key ethical questions and challenges to fair and inclusive research practices within the context of alternative clinical trials is an important step to ensure better preparedness for ongoing and future public health emergencies in resource-limited settings.
Ethics and COVID-19 Vaccine Hesitancy among Health Care Personnel (HCP) in Ethiopia
Panel Session: Personal Decision-Making During a Pandemic
Vaccine hesitancy in Ethiopia, and low- and middle-income countries (LMICs) generally, is largely under-researched. Additionally, there is limited examination of the ethical dimensions of vaccine hesitancy among healthcare personnel (HCP). Ethical considerations, which are often heightened in LMICs, include challenges with localizing professional ethics norms, conflicts between value frameworks (e.g., personal and professional), and the difficult choices that need to be made when presented with ongoing scarcity in vaccines and other resources to mitigate COVID-19. Vaccine hesitancy among HCP is deeply connected to social, cultural, professional, economic, political, and other factors that present uniquely in Ethiopia. Emerging quantitative data on COVID-19 vaccine hesitancy among HCP in Ethiopia suggest a serious challenge, but these data do not reflect the views of HCP, nor do they examine the ethical dimensions of hesitancy. We share the preliminary findings of a qualitative study involving HCP and policy and practice leaders in Ethiopia, which sought to understand factors contributing to COVID-19 vaccine hesitancy among HCP in Addis Ababa, with an emphasis on normative influences and understanding how different HCP conceptualize and operationalize their vaccine-related ethical obligations. The study, which also sought to explore the obligations of health systems towards HCP, was conducted collaboratively by bioethics and public health researchers at Addis Ababa University and Johns Hopkins University with support from the US National Institutes of Health. Consistent with global pandemic response priorities, we hope the findings from this work will contribute to development of effective and ethically-sensitive vaccination policies and practices, especially in low-resource contexts.
Co-Authors: Adamu Addissie; Yimtubezinash Woldeamanuel Mulate; Svea Closser; Andrea Ruff; Joseph Ali
Ethical Treatment for “Legacy Pain Patients”: The Role of the ICD-10 Classification System
Panel Session: Complex Clinical Decision Making II
Vivian Altiery De Jesus, MD, MBE
It is well-accepted that North America’s opioid epidemic has made clear the importance of responsible opioid prescribing. However, responsible opioid use differs across different patient populations, such that there is no “one size fits all” lesson for opioid prescribing. Legacy patients are a unique population that were titrated onto a high dose of opioids over a long period, which current guidelines and practice now take to be problematic. This places legacy patients at a higher risk of abandonment (becoming orphan patients) and healthcare discrimination. Legacy patients are the result of past failings from public health and clinical practice, yet they continue to suffer from misdiagnosis and suboptimal medical treatment. The International Classification of Disease (ICD-10) is a standard transaction code used in the medical field. Legacy patients do not have an ICD-10 assigned. However, groups associated with legacy patients do—such as patients suffering from chronic pain [G89.4] and substance abuse [F19.10]—which brings a sense of standardization to clinical (and financial) aspects of care for those populations. Assigning an ICD-10 code for legacy patients would [1] bring awareness top the situation, [2] allocate protected time by allowing clinicians to bill their care, and [3] facilitate the creation of guidelines and policy that will mitigating our failings towards legacy patients. In this paper, we begin by exploring the requirements on physicians of responsible opioid prescribing. We then demonstrate how assigning an ICD-10 code to legacy patients can help physicians to meet those ethical requirements, thereby facilitating responsible prescribing.
Co-Author: Travis Rieder, PhD
Panel Session: New Directions for Medicaid
The COVID-19 pandemic profoundly harmed the health and safety of incarcerated people in the United States and has underscored the lack of resources and oversight that hinder medical care in correctional facilities. The United States Constitution guarantees freedom from “deliberate indifference” to “serious medical needs,” a legal standard that does not assure the consistent provision of health care services. As such, the U.S. falls behind European nations that define universal standards of care grounded in principles of human rights, and, in particular, on the ideal of equivalence that incarcerated and non-incarcerated people are entitled to the same health care. Drawing on diverse legal, public health, and ethics literatures, this paper develops a conceptual analysis of the standard of care in correctional health and describes a framework for moving incrementally closer toward a universal standard. The paper argues that the expansion of Medicaid funding and benefits for incarcerated people (which has long been prohibited under federal law) alongside a system of comprehensive and enforceable external oversight would meaningfully raise the standard of care, and thereby move closer to the equivalence ideal. We consider the opportunities to improve current oversight models, which often lack public transparency, enforceability, and fact-finding capacity. These changes, on their own, will not resolve all of the thorny health problems posed by mass incarceration, but they present a tangible opportunity to make progress.
Co-Authors: Gabriel Eber; Carolyn Sufrin; Chris Beyrer; Leonard Rubenstein
Ethical Treatment for “Legacy Pain Patients”: The Role of the ICD-10 Classification System
Panel Session: Complex Clinical Decision Making II
Vivian Altiery De Jesus, MD, MBE
It is well-accepted that North America’s opioid epidemic has made clear the importance of responsible opioid prescribing. However, responsible opioid use differs across different patient populations, such that there is no “one size fits all” lesson for opioid prescribing. Legacy patients are a unique population that were titrated onto a high dose of opioids over a long period, which current guidelines and practice now take to be problematic. This places legacy patients at a higher risk of abandonment (becoming orphan patients) and healthcare discrimination. Legacy patients are the result of past failings from public health and clinical practice, yet they continue to suffer from misdiagnosis and suboptimal medical treatment. The International Classification of Disease (ICD-10) is a standard transaction code used in the medical field. Legacy patients do not have an ICD-10 assigned. However, groups associated with legacy patients do—such as patients suffering from chronic pain [G89.4] and substance abuse [F19.10]—which brings a sense of standardization to clinical (and financial) aspects of care for those populations. Assigning an ICD-10 code for legacy patients would [1] bring awareness top the situation, [2] allocate protected time by allowing clinicians to bill their care, and [3] facilitate the creation of guidelines and policy that will mitigating our failings towards legacy patients. In this paper, we begin by exploring the requirements on physicians of responsible opioid prescribing. We then demonstrate how assigning an ICD-10 code to legacy patients can help physicians to meet those ethical requirements, thereby facilitating responsible prescribing.
Co-Author: Travis Rieder, PhD
Panel Session: Issues in Allocation Equity
Introduction: Pulmonary function tests (PFTs) are fundamental tools for evaluating respiratory disease, but their interpretation currently relies upon race-specific equations (RSEs), which normalize observed lower average lung function among Black than White individuals. While using RSEs has recently come under ethical scrutiny, little is known about their potential impact on access to care and health disparities. RSEs may bias access to lung transplants because lung allocation score (LAS), the primary determinant of organ waitlist priority, incorporates PFTs.Methods: We developed a cohort from the Scientific Registry for Transplant Recipients and included all patients of self-reported Black or White race with PFTs available who were listed for lung transplant in the U.S. from 2006-2015 due to common diagnoses. We estimated the LAS with a race-specific approach using RSEs and with a proposed race-neutral approach. Differences in LAS were compared by race. Higher LAS indicates higher transplant priority.Results: Among 4130 patients, 310 (7.5%) were Black and 3820 (92.5%) White. Using RSEs, the mean LAS was greater among Black versus White patients (32.7 vs 31.7, p<0.001). A race-neutral approach resulted inmean LAS change of +0.70 among Black patients and -0.47 among White patients (p<0.001).Conclusion: Compared to a race-neutral approach, RSEs result in lower priority for lung transplant for Black compared to White patients. As such RSEs may contribute to inequitable care, raising additional distributive justice-based concerns to using RSEs. Our findings demonstrate the need for more work to understand the impact of race-based algorithms on equitable healthcare delivery.
Co-Authors: Jeremy Sugarman, MD, MPH, MA; Kadija Ferryman, PhD; Christian Merlo, MD, MPH; Meredith McCormack, MD, MHS
Moderator: Kadija Ferryman, PhD
At the turn of the 20th century, the eugenics movement and the early field of Mendelian genetics were combined by some thinkers to establish a mistaken concept of racial hierarchy and superiority. Believing the eugenic science to be correct, scientists, physicians, politicians, theologians, and lawyers rallied around the call to improve the American stock, bringing the hype to the general public by way of academic courses, better baby competitions, and print ads. By mid-century, most scientists rejected the “science” of eugenics as overly simplistic. Not all people followed in this belief, however, and today we still see remnants of the eugenical thinking common then. Worsening the situation, advances in genomics (e.g., polygenic scores) have emboldened fringe thinkers in their claims to racial and other kinds of superiority, centered on an incorrect belief of genetic essentialism. With radicalization, these beliefs not uncommonly are cited as a reason for violent attacks on minoritized groups.
We address various ethical, legal, and social concerns surrounding genetic research and the potential weaponization of that research against minoritized people. What responsibilities do researchers have to protect their work from such hijackings? How should findings be communicated to the general public? Should there be restrictions on the sorts of studies undertaken by scientists? Should regulations be imposed on large scientific (genetic) databases?
Ethics and COVID-19 Vaccine Hesitancy among Health Care Personnel (HCP) in Ethiopia
Panel Session: Personal Decision-Making During a Pandemic
Vaccine hesitancy in Ethiopia, and low- and middle-income countries (LMICs) generally, is largely under-researched. Additionally, there is limited examination of the ethical dimensions of vaccine hesitancy among healthcare personnel (HCP). Ethical considerations, which are often heightened in LMICs, include challenges with localizing professional ethics norms, conflicts between value frameworks (e.g., personal and professional), and the difficult choices that need to be made when presented with ongoing scarcity in vaccines and other resources to mitigate COVID-19. Vaccine hesitancy among HCP is deeply connected to social, cultural, professional, economic, political, and other factors that present uniquely in Ethiopia. Emerging quantitative data on COVID-19 vaccine hesitancy among HCP in Ethiopia suggest a serious challenge, but these data do not reflect the views of HCP, nor do they examine the ethical dimensions of hesitancy. We share the preliminary findings of a qualitative study involving HCP and policy and practice leaders in Ethiopia, which sought to understand factors contributing to COVID-19 vaccine hesitancy among HCP in Addis Ababa, with an emphasis on normative influences and understanding how different HCP conceptualize and operationalize their vaccine-related ethical obligations. The study, which also sought to explore the obligations of health systems towards HCP, was conducted collaboratively by bioethics and public health researchers at Addis Ababa University and Johns Hopkins University with support from the US National Institutes of Health. Consistent with global pandemic response priorities, we hope the findings from this work will contribute to development of effective and ethically-sensitive vaccination policies and practices, especially in low-resource contexts.
Co-Authors: Adamu Addissie; Yimtubezinash Woldeamanuel Mulate; Svea Closser; Andrea Ruff; Joseph Ali
Flash Presentation: Issues Highlighted by the COVID-19 Pandemic
Advances in our understanding of host genomics play an important role in precision medicine and precision public health approaches to the management and control of infectious disease outbreaks, such as COVID-19. During future outbreaks, it is likely that host genomic information may be used in population-wide screening programs to stratify individuals based on their predicted genetic risk in addition to other non-genomic risk factors. This use of genomic information raises several ethical, legal, and social implications in the infectious disease context and needs to be evaluated through a public health ethics lens. Currently, there are very few normative analyses that have explored the adequacy of using existing public health ethics frameworks in this precision public health context.This study will focus on three key public health ethics frameworks: (1) ethical framework for public health by Nancy Kass, (2) general moral considerations of public health ethics by Childress et al., and (3) stewardship model by the Nuffield Council on Bioethics. The study will normatively analyze whether and how these three frameworks should inform the use of population-wide host genomic screening during an infectious disease outbreak. It will identify whether or not these frameworks adequately capture the ethical issues of such an intervention. The findings will be used to recommend additional ethical principles or a different approach that may need to be considered for evaluating whether or not public health authorities should implement these infectious disease-related host genomic screening programs.
Panel Session: Fair and inclusive research practices for alternative clinical trials during public health emergencies in resource limited settings
In the wake of several infectious disease outbreaks during the past two decades – including COVID-19 and Ebola – there has been increasing use of alternative clinical trial designs (such as adaptive trials) in public health emergency contexts. The use of these research models, predominantly conducted through international partnership between two or more research institutions, has accelerated identification of important aspects of disease transmission, prevention, and treatment that directly impact both global clinical knowledge and local public health policy. However, these methods and partnership models also introduce novel ethical questions around their design and use, particularly within the context of limited-resource settings. In this project, we conceptualized the ethical considerations around use of alternative clinical trial designs during public health emergencies with a focus on fair and inclusive research practices within complex international research partnerships in resource-limited settings. A deliberative process was used to identify and categorize themes into a conceptual model that critically analyzes the ethical tensions between scientific knowledge production, protection of research participants, and research-related obligations to the community during a public health emergency. We address issues including informed consent, clinical equipoise, obligations to local research capacity and ethical oversight, and the use alternative clinical trial research protocols within partnerships that have discordant financial and material resources. Identifying key ethical questions and challenges to fair and inclusive research practices within the context of alternative clinical trials is an important step to ensure better preparedness for ongoing and future public health emergencies in resource-limited settings.
Making Families, Choosing Race: Ethical Issues in Sperm Donor Selection
Panel Session: Moving Towards Equity in Reproduction and Race
The notion that, “To create a baby of one’s own race, with or without technological assistance, is considered so natural as to not even constitute a choice,” is an unspoken assumption in the realm of gamete donation (Russell 2015, 605). Yet, due to structural constraints or recipients’ unique backgrounds, such “racial matching” of gamete donor and recipient is not always possible. This paper focuses on the experience of sperm donor selection for interracial lesbian couples. Utilizing longitudinal interviews conducted before and after the birth of their donor conceived child, this paper uncovers the tensions these couples encountered when attempting to balance their desires for racial matching with their intent to achieve a biological sibling kinship. In facing a trade-off between one or the other of these priorities, this tension reveals not only how biological framings of race and kinship continue to structure decisions about family formation, but also the limits of diversity in the marketplace in which greater inclusion often does not—and in this instance, cannot—offer a path to replicating idealized models of the family. This paper challenges marketplace logics of choice and selection, rather than just past histories of exclusion, to imagine what greater equity would look like for the families that could be imagined and created through the utilization of reproductive technologies. Additionally, this paper asks whether there is an entitlement to having a child of one’s same race through the use of assisted reproductive technologies.
Panel Session: New Directions for Medicaid
The COVID-19 pandemic profoundly harmed the health and safety of incarcerated people in the United States and has underscored the lack of resources and oversight that hinder medical care in correctional facilities. The United States Constitution guarantees freedom from “deliberate indifference” to “serious medical needs,” a legal standard that does not assure the consistent provision of health care services. As such, the U.S. falls behind European nations that define universal standards of care grounded in principles of human rights, and, in particular, on the ideal of equivalence that incarcerated and non-incarcerated people are entitled to the same health care. Drawing on diverse legal, public health, and ethics literatures, this paper develops a conceptual analysis of the standard of care in correctional health and describes a framework for moving incrementally closer toward a universal standard. The paper argues that the expansion of Medicaid funding and benefits for incarcerated people (which has long been prohibited under federal law) alongside a system of comprehensive and enforceable external oversight would meaningfully raise the standard of care, and thereby move closer to the equivalence ideal. We consider the opportunities to improve current oversight models, which often lack public transparency, enforceability, and fact-finding capacity. These changes, on their own, will not resolve all of the thorny health problems posed by mass incarceration, but they present a tangible opportunity to make progress.
Co-Authors: Gabriel Eber; Carolyn Sufrin; Chris Beyrer; Leonard Rubenstein
Protecting Pediatric Transgender Patient Records from Unethical Child Abuse Investigations
Panel Session: Sex, Gender, and Vulnerability: Protecting Minor Patients
As of March 2022, officials in the state of Texas have begun to treat minors’ access to gender affirming care (GAC) as child abuse and to target parents of transgender children for investigation by the Department of Family and Protective Services. Although legal advocates have already sued to block such investigations in Texas, policymakers in other states have proposed to take similar actions. These policies demonstrate some of the risks of collecting data about transgender patients, risks which historically were managed by clinicians who intentionally kept references to GAC out of the medical record. Protecting trans kids and their families requires special treatment of their medical records, especially when those records are kept by pediatric gender clinics that are likely to be targeted by state actors who conflate GAC with child abuse.This presentation will demonstrate that as in other areas of medicine in which ethical and legal obligations frequently conflict (e.g., care for undocumented patients), care for transgender children and adolescents may require that clinicians and institutions develop shadow pathways to ensure the safety of patients from the potential risks of disclosure sought by the state. Processes and technologies that silo adolescent mental and sexual health information from other medical records can be adapted for management of GAC information, but are not in themselves sufficient protections. Pediatric gender clinics and their institutions must further prepare to legally defend such information and to anticipate challenges associated with electronic health record access.
Panel Session: Diversity, Disparity, and Inclusion
As of March 2022, officials in the state of Texas have begun to treat minors’ access to gender affirming care (GAC) as child abuse and to target parents of transgender children for investigation by the Department of Family and Protective Services. Although legal advocates have already sued to block such investigations in Texas, policymakers in other states have proposed to take similar actions. These policies demonstrate some of the risks of collecting data about transgender patients, risks which historically were managed by clinicians who intentionally kept references to GAC out of the medical record. Protecting trans kids and their families requires special treatment of their medical records, especially when those records are kept by pediatric gender clinics that are likely to be targeted by state actors who conflate GAC with child abuse.This presentation will demonstrate that as in other areas of medicine in which ethical and legal obligations frequently conflict (e.g., care for undocumented patients), care for transgender children and adolescents may require that clinicians and institutions develop shadow pathways to ensure the safety of patients from the potential risks of disclosure sought by the state. Processes and technologies that silo adolescent mental and sexual health information from other medical records can be adapted for management of GAC information, but are not in themselves sufficient protections. Pediatric gender clinics and their institutions must further prepare to legally defend such information and to anticipate challenges associated with electronic health record access.
More than Freedom: The ethics of Decarceration without Sufficient Structural Support
Panel Session: Treatment of Patients with Mental Health Issues
People enter the criminal legal system with complex and intersecting needs that are often the product of long term, concentrated structural disadvantage. The carceral state is ill equipped and inappropriately suited for handling these needs, but in our neoliberal era of disinvestment from social welfare provision and sustained community support, they have become de facto safety nets of last resort. We see evidence of this when we confront the reality that Los Angeles County Jail is the largest psychiatric treatment facility in the country, or that in Philadelphia, a court order can be the only way to access guaranteed, repeated, inpatient drug treatment. In other words, the carceral state plays a larger role in our social safety net than we often like to recognize. This paper argues first that this carceral safety net cannot simply be removed in a vacuum without presenting serious ethical challenges. It then argues second that we need an ethical framework for jurisdictions navigating decarceration at the local level. In order to address the intersecting crises of mass incarceration, addiction, violence, and unemployment in comprehensive ways that promote community health, we need to acknowledge—and intervene upon—the role that the criminal legal system has and currently plays in basic health and social service provision. Only when we recognize the complex and contradictory functions currently served by carceral systems of oppression and control can we ethically navigate replacing these services with more equitable, heath promoting, community-based services.