Emily A Largent
Biographic Data
| ID | 1743157 |
|---|---|
| NAME | Emily A Largent |
| GIVEN NAMES | Emily A |
| FAMILY NAME | Largent |
| SIGNATURE | LARGENT E A |
| AFFILIATIONS | University of Pennsylvania |
| ORCID | 0000-0002-7536-5077 |
| VERIFIED | Yes |
| TOTAL WORKS | 25 |
| TOTAL CITATIONS | 7 |
| AUTHOR COUNT | 25 |
| EDITOR COUNT | 0 |
| FIRST PUBLICATION YEAR | 2011 |
| LATEST PUBLICATION YEAR | 2025 |
| H-INDEX | 1 |
Theory-Based Message Design for Recruitment of Underrepresented Racial/Ethnic Groups Into Alzheimer’s-Focused Research Registries
Alzheimer’s disease (AD)-focused recruitment research registries can help identify eligible participants for AD studies, but registry participation is limited among racial and ethnic groups most at risk for AD. Using the Reasoned Action Approach (RAA), this study is part of a larger project to design theory-based persuasive recruitment messages that would encourage registry enrollment among underrepresented racial and ethnic groups. National surv…
Are knowledge and interpersonal contact cures for Alzheimer’s stigma? Data from caregivers offer clues
Research on caregivers suggests interpersonal contact with persons with Alzheimer's disease (AD) and higher disease-oriented knowledge may heighten AD stigma, though these same mechanisms are often employed in anti-stigma campaigns. If we better understand associations among caregiver experience, interpersonal contact, AD knowledge and AD stigma, we can develop improved ways of reducing stigma and avoid unintended consequences. In a factorial des…
Choice in the Context of Dementia
This introduction to the special report “Facing Dementia: Clarifying End‐of‐Life Choices, Supporting Better Lives” explains why focused attention to dementia is needed in bioethics and in health care practice in a range of settings. It explains how this strongly age‐associated condition shapes individual lives over years, revealing inequities in how dementia care is financed. The introduction explains the structure of the report, which consists o…
What Makes a Better Life for People Facing Dementia? Toward Dementia‐Friendly Health and Social Policy, Medical Care, and Community Support in the United States
Taking steps to build a more dementia‐friendly society is essential for addressing the needs of people experiencing dementia. Initiatives that improve the quality of life for those living with dementia are needed to lessen controllable factors that can negatively influence how people envision a future trajectory of dementia for themselves. Programs that provide better funding and better coordination for care support would lessen caregiver burden …
When People Facing Dementia Choose to Hasten Death
Some individuals facing dementia contemplate hastening their own death: weighing the possibility of living longer with dementia against the alternative of dying sooner but avoiding the later stages of cognitive and functional impairment. This weighing resonates with an ethical and legal consensus in the United States that individuals can voluntarily choose to forgo life‐sustaining interventions and also that medical professionals can support thes…
A survey study of Alzheimer’s stigma among Black adults
While older adults reported less AD stigma than younger adults, AD biomarker testing caused similarly high concerns about structural discrimination and negative severity attributions. Thus, use of AD biomarker diagnosis may increase AD stigma and exacerbate healthcare disparities known to effect AD diagnosis in some Black adults. Advances in AD diagnosis may interact with social and structural factors to differentially affect groups of Black adul…
Double-Edged Sword
A positive biomarker result heightens AD diagnosis confidence but also correlates with more AD stigma. Our findings inform strategies to promote early diagnosis and clinical discussions with individuals undergoing AD biomarker testing
Gender of Study Partners and Research Participants Associated With Differences in Study Partner Ratings of Cognition and Activity Level
SP and participant gender influence SPs' reports of another person's cognition and activity level. Our findings expand what is understood about how nondisease factors influence measures of disease severity
Predictors of who Serves as an Alzheimer’s Disease Research Participant’s Study Partner and the Impact of their Relationship on Study Partners’ Reports on Participants
Background: Alzheimer’s disease and Alzheimer’s disease related dementias (AD/ADRD) research typically requires participants to enroll with a “study partner” (SP). Little is known about what predicts who steps into the SP role or whether the SP’s relationship to the participant affects their reports of disease severity.Methods: Health and Retirement Study data (HRS), collected prior to the Aging, Demographics and Memory Study (ADAMS), was used to…
Deciding with Others
Over the course of human life, health care decision‐making is often interdependent. In this article, we use “interdependence” to refer to patients’ engagement of nonclinicians—for example, family members or trusted friends—to reach health care decisions. Interdependence, we suggest, is common for patients in all stages of life, from early childhood to late adulthood. This view contrasts with the common bioethical assumption that medical decisions…
Covid-19 Vaccine Refusal and Fair Allocation of Scarce Medical Resources
When hospitals face surges of patients with COVID-19, fair allocation of scarce medical resources remains a challenge. Scarcity has at times encompassed not only hospital and intensive care unit beds-often reflecting staffing shortages-but also therapies and intensive treatments. Safe, highly effective COVID-19 vaccines have been free and widely available since mid-2021, yet many Americans remain unvaccinated by choice. Should their decision to f…
The relative contributions of biomarkers, disease modifying treatment, and dementia severity to Alzheimer's stigma
Public Attitudes toward Consent When Research Is Integrated into Care—Any “Ought” from All the “Is”
Research that is integrated into ongoing clinical activities holds the potential to accelerate the generation of knowledge to improve the health of individuals and populations. Yet integrating research into clinical care presents difficult ethical and regulatory challenges, including how or whether to obtain informed consent. Multiple empirical studies have explored patients' and the public's attitudes toward approaches to consent for pragmatic r…
Incorporating Health Equity Into Covid-19 Reopening Plans
California has focused on health equity in the state’s COVID-19 reopening plan. The Blueprint for a Safer Economy assigns each of California’s 58 counties into 1 of 4 tiers based on 2 metrics: test positivity rate and adjusted case rate. To advance to the next less-restrictive tier, counties must meet that tier’s test positivity and adjusted case rate thresholds. In addition, counties must have a plan for targeted investments within disadvantaged…
From preferences to policies? Considerations when incorporating empirical ethics findings into research policymaking
Interest in the use of medical data for health research is increasing. Yet, as Elizabeth Ford and colleagues rightly note, there are open questions about the suitability of existing ethical and regulatory oversight frameworks for these research approaches. In their feature article, ‘Should free text data in electronic medical records be shared for research? A citizen’s jury study in the United Kingdom’, Ford et al report the results of a delibera…
Compensating for research risk
When payment is offered for controlled human infection model (CHIM) research, ethical concerns may be heightened due to unfamiliarity with this study design as well as perceptions—and misperceptions—regarding risk. Against this backdrop, we commend Grimwade et al 1 for their careful handling of the relevant issues, coupling empirical and conceptual approaches. We agree with foundational elements of the authors’ analysis, including the acceptabili…
Offering Payment in Clinical Research
Offering payment is an important means of facilitating research participation. Yet, offers of payment raise ethical challenges that may be heightened when prospective participants suffer from or are at risk for opioid use disorder (OUD). We surveyed principal investigators (PIs) conducting research in this population to characterize the relative importance they assign to various ethical and practical factors when designing offers of payment and a…
Of Drowning Children and Doubtful Analogies
In this issue of the Hastings Center Report, James Sabin and his colleagues ask what responsibility investigators in a learning health organization have to patients when research—particularly research of which patients might be unaware—illuminates problematic aspects of the patients' care. Sabin and his colleagues were confronted by this question in the midst of designing a randomized controlled trial that sought to determine if an educational in…
Ethical Acceptability of Reducing the Legal Blood Alcohol Concentration Limit to 0.05
Twenty-nine Americans die in alcohol-impaired driving crashes daily. The National Academies of Sciences, Engineering, and Medicine released a report that identified strategies to reduce alcohol-impaired driving deaths. One strategy suggests amending state laws to reduce the legal blood alcohol concentration (BAC) limit from 0.08 to 0.05. Although BAC 0.05 laws would likely reduce alcohol-related deaths, they are also controversial. Critics object…
Patient‐Engaged Research
To ensure that the information resulting from research is relevant to patients, the Patient‐Centered Outcomes Research Institute eschews the “traditional health research” paradigm, in which investigators drive all aspects of research, in favor of one in which patients assume the role of research partner. If we accept the premise that patient engagement can offer fresh perspectives that shape research in valuable ways, then at least two important …
Patient‐Centered Outcomes Research
IRB Oversight of Patient-Centered Outcomes Research
Patient-centered outcomes research (PCOR) is becoming increasingly common. However, there is little evidence regarding what novel ethical challenges, if any, are posed by PCOR with relevance to institutional review board (IRB) oversight and human subjects protections. This article reports the results of a national survey of all IRB chairpersons from research-intensive institutions in the United States. Findings address the responsibilities of IRB…
A Prescription for Ethical Learning
We argued last year in this journal that extensive integration of research and care is a worthy goal of health system design, and we second the call from Ruth Faden and colleagues to move toward learning health care systems. As they recognize, learning health care systems demand the coordination of research and medical ethics—two sets of normative commitments that have long been considered distinct. In offering a novel ethics framework for such s…
Which Orphans Will Find a Home? The Rule of Rescue in Resource Allocation for Rare Diseases
The rule of rescue describes the moral impulse to save identifiable lives in immediate danger at any expense. Think of the extremes taken to rescue a small child who has fallen down a well, a woman pinned beneath the rubble of an earthquake, or a submarine crew trapped on the ocean floor. No effort is deemed too great. Yet should this same moral instinct to rescue, regardless of cost, be applied in the emergency room, the hospital, or the communi…
Can Research and Care Be Ethically Integrated
Medical ethics assumes a clear boundary between clinical research and clinical medicine: one produces knowledge for the benefit of future patients, while the other provides optimal care to individuals right now. It also assumes that the two cannot be integrated without sacrificing the needs of the current patient to those of future patients. But integration could allow us to provide better care to everyone, now and in the future
The relative contributions of biomarkers, disease modifying treatment, and dementia severity to Alzheimer's stigma
Incorporating Health Equity Into Covid-19 Reopening Plans
California has focused on health equity in the state’s COVID-19 reopening plan. The Blueprint for a Safer Economy assigns each of California’s 58 counties into 1 of 4 tiers based on 2 metrics: test positivity rate and adjusted case rate. To advance to the next less-restrictive tier, counties must meet that tier’s test positivity and adjusted case rate thresholds. In addition, counties must have a plan for targeted investments within disadvantaged…
IRB Oversight of Patient-Centered Outcomes Research
Patient-centered outcomes research (PCOR) is becoming increasingly common. However, there is little evidence regarding what novel ethical challenges, if any, are posed by PCOR with relevance to institutional review board (IRB) oversight and human subjects protections. This article reports the results of a national survey of all IRB chairpersons from research-intensive institutions in the United States. Findings address the responsibilities of IRB…
Can Research and Care Be Ethically Integrated
Medical ethics assumes a clear boundary between clinical research and clinical medicine: one produces knowledge for the benefit of future patients, while the other provides optimal care to individuals right now. It also assumes that the two cannot be integrated without sacrificing the needs of the current patient to those of future patients. But integration could allow us to provide better care to everyone, now and in the future
Which Orphans Will Find a Home? The Rule of Rescue in Resource Allocation for Rare Diseases
The rule of rescue describes the moral impulse to save identifiable lives in immediate danger at any expense. Think of the extremes taken to rescue a small child who has fallen down a well, a woman pinned beneath the rubble of an earthquake, or a submarine crew trapped on the ocean floor. No effort is deemed too great. Yet should this same moral instinct to rescue, regardless of cost, be applied in the emergency room, the hospital, or the communi…
A Prescription for Ethical Learning
We argued last year in this journal that extensive integration of research and care is a worthy goal of health system design, and we second the call from Ruth Faden and colleagues to move toward learning health care systems. As they recognize, learning health care systems demand the coordination of research and medical ethics—two sets of normative commitments that have long been considered distinct. In offering a novel ethics framework for such s…
Patient‐Engaged Research
To ensure that the information resulting from research is relevant to patients, the Patient‐Centered Outcomes Research Institute eschews the “traditional health research” paradigm, in which investigators drive all aspects of research, in favor of one in which patients assume the role of research partner. If we accept the premise that patient engagement can offer fresh perspectives that shape research in valuable ways, then at least two important …
Patient‐Centered Outcomes Research
IRB Oversight of Patient-Centered Outcomes Research
Patient-centered outcomes research (PCOR) is becoming increasingly common. However, there is little evidence regarding what novel ethical challenges, if any, are posed by PCOR with relevance to institutional review board (IRB) oversight and human subjects protections. This article reports the results of a national survey of all IRB chairpersons from research-intensive institutions in the United States. Findings address the responsibilities of IRB…
Of Drowning Children and Doubtful Analogies
In this issue of the Hastings Center Report, James Sabin and his colleagues ask what responsibility investigators in a learning health organization have to patients when research—particularly research of which patients might be unaware—illuminates problematic aspects of the patients' care. Sabin and his colleagues were confronted by this question in the midst of designing a randomized controlled trial that sought to determine if an educational in…
Ethical Acceptability of Reducing the Legal Blood Alcohol Concentration Limit to 0.05
Twenty-nine Americans die in alcohol-impaired driving crashes daily. The National Academies of Sciences, Engineering, and Medicine released a report that identified strategies to reduce alcohol-impaired driving deaths. One strategy suggests amending state laws to reduce the legal blood alcohol concentration (BAC) limit from 0.08 to 0.05. Although BAC 0.05 laws would likely reduce alcohol-related deaths, they are also controversial. Critics object…
From preferences to policies? Considerations when incorporating empirical ethics findings into research policymaking
Interest in the use of medical data for health research is increasing. Yet, as Elizabeth Ford and colleagues rightly note, there are open questions about the suitability of existing ethical and regulatory oversight frameworks for these research approaches. In their feature article, ‘Should free text data in electronic medical records be shared for research? A citizen’s jury study in the United Kingdom’, Ford et al report the results of a delibera…
Compensating for research risk
When payment is offered for controlled human infection model (CHIM) research, ethical concerns may be heightened due to unfamiliarity with this study design as well as perceptions—and misperceptions—regarding risk. Against this backdrop, we commend Grimwade et al 1 for their careful handling of the relevant issues, coupling empirical and conceptual approaches. We agree with foundational elements of the authors’ analysis, including the acceptabili…
Offering Payment in Clinical Research
Offering payment is an important means of facilitating research participation. Yet, offers of payment raise ethical challenges that may be heightened when prospective participants suffer from or are at risk for opioid use disorder (OUD). We surveyed principal investigators (PIs) conducting research in this population to characterize the relative importance they assign to various ethical and practical factors when designing offers of payment and a…
Public Attitudes toward Consent When Research Is Integrated into Care—Any “Ought” from All the “Is”
Research that is integrated into ongoing clinical activities holds the potential to accelerate the generation of knowledge to improve the health of individuals and populations. Yet integrating research into clinical care presents difficult ethical and regulatory challenges, including how or whether to obtain informed consent. Multiple empirical studies have explored patients' and the public's attitudes toward approaches to consent for pragmatic r…
Incorporating Health Equity Into Covid-19 Reopening Plans
California has focused on health equity in the state’s COVID-19 reopening plan. The Blueprint for a Safer Economy assigns each of California’s 58 counties into 1 of 4 tiers based on 2 metrics: test positivity rate and adjusted case rate. To advance to the next less-restrictive tier, counties must meet that tier’s test positivity and adjusted case rate thresholds. In addition, counties must have a plan for targeted investments within disadvantaged…
Predictors of who Serves as an Alzheimer’s Disease Research Participant’s Study Partner and the Impact of their Relationship on Study Partners’ Reports on Participants
Background: Alzheimer’s disease and Alzheimer’s disease related dementias (AD/ADRD) research typically requires participants to enroll with a “study partner” (SP). Little is known about what predicts who steps into the SP role or whether the SP’s relationship to the participant affects their reports of disease severity.Methods: Health and Retirement Study data (HRS), collected prior to the Aging, Demographics and Memory Study (ADAMS), was used to…
Deciding with Others
Over the course of human life, health care decision‐making is often interdependent. In this article, we use “interdependence” to refer to patients’ engagement of nonclinicians—for example, family members or trusted friends—to reach health care decisions. Interdependence, we suggest, is common for patients in all stages of life, from early childhood to late adulthood. This view contrasts with the common bioethical assumption that medical decisions…
Covid-19 Vaccine Refusal and Fair Allocation of Scarce Medical Resources
When hospitals face surges of patients with COVID-19, fair allocation of scarce medical resources remains a challenge. Scarcity has at times encompassed not only hospital and intensive care unit beds-often reflecting staffing shortages-but also therapies and intensive treatments. Safe, highly effective COVID-19 vaccines have been free and widely available since mid-2021, yet many Americans remain unvaccinated by choice. Should their decision to f…
The relative contributions of biomarkers, disease modifying treatment, and dementia severity to Alzheimer's stigma
Gender of Study Partners and Research Participants Associated With Differences in Study Partner Ratings of Cognition and Activity Level
SP and participant gender influence SPs' reports of another person's cognition and activity level. Our findings expand what is understood about how nondisease factors influence measures of disease severity
Choice in the Context of Dementia
This introduction to the special report “Facing Dementia: Clarifying End‐of‐Life Choices, Supporting Better Lives” explains why focused attention to dementia is needed in bioethics and in health care practice in a range of settings. It explains how this strongly age‐associated condition shapes individual lives over years, revealing inequities in how dementia care is financed. The introduction explains the structure of the report, which consists o…
What Makes a Better Life for People Facing Dementia? Toward Dementia‐Friendly Health and Social Policy, Medical Care, and Community Support in the United States
Taking steps to build a more dementia‐friendly society is essential for addressing the needs of people experiencing dementia. Initiatives that improve the quality of life for those living with dementia are needed to lessen controllable factors that can negatively influence how people envision a future trajectory of dementia for themselves. Programs that provide better funding and better coordination for care support would lessen caregiver burden …
When People Facing Dementia Choose to Hasten Death
Some individuals facing dementia contemplate hastening their own death: weighing the possibility of living longer with dementia against the alternative of dying sooner but avoiding the later stages of cognitive and functional impairment. This weighing resonates with an ethical and legal consensus in the United States that individuals can voluntarily choose to forgo life‐sustaining interventions and also that medical professionals can support thes…
A survey study of Alzheimer’s stigma among Black adults
While older adults reported less AD stigma than younger adults, AD biomarker testing caused similarly high concerns about structural discrimination and negative severity attributions. Thus, use of AD biomarker diagnosis may increase AD stigma and exacerbate healthcare disparities known to effect AD diagnosis in some Black adults. Advances in AD diagnosis may interact with social and structural factors to differentially affect groups of Black adul…
Double-Edged Sword
A positive biomarker result heightens AD diagnosis confidence but also correlates with more AD stigma. Our findings inform strategies to promote early diagnosis and clinical discussions with individuals undergoing AD biomarker testing
Theory-Based Message Design for Recruitment of Underrepresented Racial/Ethnic Groups Into Alzheimer’s-Focused Research Registries
Alzheimer’s disease (AD)-focused recruitment research registries can help identify eligible participants for AD studies, but registry participation is limited among racial and ethnic groups most at risk for AD. Using the Reasoned Action Approach (RAA), this study is part of a larger project to design theory-based persuasive recruitment messages that would encourage registry enrollment among underrepresented racial and ethnic groups. National surv…
Are knowledge and interpersonal contact cures for Alzheimer’s stigma? Data from caregivers offer clues
Research on caregivers suggests interpersonal contact with persons with Alzheimer's disease (AD) and higher disease-oriented knowledge may heighten AD stigma, though these same mechanisms are often employed in anti-stigma campaigns. If we better understand associations among caregiver experience, interpersonal contact, AD knowledge and AD stigma, we can develop improved ways of reducing stigma and avoid unintended consequences. In a factorial des…
Medicine (20 works) · Psychology (20 works) · Political science (13 works) · Law (12 works) · Ethics in Clinical Research (11 works) · Psychiatry (11 works) · Business (7 works) · Disease (7 works) · Ethics in medical practice (7 works) · Health care (7 works)