In its expansion to genomic, epidemiological and biomedical research, citizen science has been promoted as contributing to the democratisation of medical research and healthcare. At the same time, it has been criticised for reinforcing patterns of exclusion in health and biomedicine, and sometimes even creating new ones. Although citizen science has the potential to make biomedical research more inclusive, the benefits of current citizen science initiatives are not equally accessible for all people—in particular those who are resource-poor, located outside of (...) traditional networks of healthcare services, or members of minorities and marginalised groups. In view of growing public investments in participatory research endeavours, we argue that it should be considered more explicitly if, and how, citizen science could help make research more inclusive, contribute to the public good, and possibly even lead to better and more equitable healthcare. Reflecting on emerging ethical concerns for scientific conduct and best medical practice, we propose a set of relevant considerations for researchers, practitioners, bioethicists, funders and participants who seek to advance ethical practices of citizen-led health initiatives, and address profound differences in position, privilege and power in research. (shrink)

Through the use of culturally appropriate videos on precision medicine research (PMR) that were developed and tailored to five racial and ethnic groups of patients, and subsequent focus-group discu...

Broadband internet access is a super-determinant of health that plays an important role in healthcare and public health outcomes. Laws and policies shape implementation and use of broadband for healthcare and public health. Connecting broadband and telehealth laws with their health impacts, through legal epidemiological research, enables states to make evidence-based decisions to improve health outcomes for underserved populations.

Prosocial crowdfunding was originally conceived as a financial mechanism to assist vulnerable unbanked populations, typically excluded from formal financial markets. It subsequently grew into a billion-dollar scheme (Kiva 2020a, https://www.kiva.org/blog/1-billion-in-life-changing-loans ) in the multi-billion-dollar crowdfunding industry. However, recent evidence claims prosocial crowdfunding may be shifting away from its goal to support the poor and underserved. Drawing on a composite social responsibility and framing theory framework, we examine the role that vulnerability plays in successfully raising funds in a prosocial (...) crowdfunding context. We conduct multilevel logistic regressions on a sample of microloans allocated to 105,727 ventures in 64 countries. Our results indicate that applying for funds through a field partner which caters to vulnerable populations may in fact have a negative effect on the entrepreneur’s request to be fully funded. Notwithstanding, framing the entrepreneur as being female or rural as key characteristics of individual vulnerability increases the project’s likelihood to be fully funded. This conflict offers noteworthy theoretical and practical implications for ethics in prosocial crowdfunding, an understudied field of research. (shrink)

There are compelling scientific, political, historical, legal, and ethical reasons why the All of Us research program participants should reflect the population of the United States. Many commentat...

There is a consensus that the effects of medical brain drain, especially in the Sub-Saharan African countries, ought to be perceived as more than a simple misfortune. Temporary restrictions on the emigration of health workers from the region is one of the already existing policy measures to tackle the issue—while such a restrictive measure brings about the need for quite a justificatory work. A recent normative contribution to the debate by Gillian Brock provides a fruitful starting point. In the first (...) step of her defence of emigration restrictions, Brock provides three reasons why skilled workers themselves would hold responsibilities to assist with respect to vital needs of their compatriots. These are fair reciprocity, duty to support vital institutions, and attending to the unintended harmful consequences of one’s actions. While the first two are explained and also largely discussed in the literature, the third requires an explication on how and on which basis skilled workers would have a responsibility as such. In this article, I offer a vulnerability approach with its dependency aspect that may account for why the health workers in underserved contexts would have a responsibility to attend to the unintended side effects of their actions that may lead to a vital risk of harm for the population. I discuss HIV/AIDS care in Zimbabwe as a case in point in order to show that local health workers may have responsibilities to assist the population who are vulnerable to their mobility. (shrink)

A growing number of nurse researchers travel globally to conduct research in poor and underserved populations in developing nations. These researchers, while well versed in research ethics, often find it difficult to apply traditional ethical standards to populations in developing countries. The problem of applying ethical standards across cultures is explained by a long-standing debate about the nature of ethical principles. Fundamentalism is the philosophical stance that ethical principles are universal, while the anthropologically-based ‘multicultural’ model claims the (...) philosophical position that principles are culturally bound. The authors explicate the two philosophical stances and advocate a morally sensitive but moderate position of ‘ethical multiculturalism’ rather than favouring either of the above philosophical positions. The final section suggests ways to promote ethical multiculturalism while planning and conducting nursing research. (shrink)

The impact of genetic technologies is being felt in many aspects of society, including medicine and the legal system, as well as the personal lives of individuals. How do we make sure that all segments of the population are equally aware of these technologies and have ample opportunity to voice opinions and shape the future? One ongoing effort, which began ten years ago and in which we are directly involved, is the Personal Genetics Education Project, a nonprofit initiative housed within (...) and largely supported by the Department of Genetics at Harvard Medical School. The goal of pgEd is to raise public awareness and promote conversations about the benefits and implications of the genetics revolution in ways that are inclusive of all voices regardless of socioeconomic, educational, ethnic, cultural, or religious background. This essay describes our approach and experience in hopes that they will be of help to others engaged in similar efforts. (shrink)

Portable MRI for neuroimaging research in remote field settings can reach populations previously excluded from research, including communities underrepresented in current brain neuroscience databases and marginalized in health care. However, research conducted far from a medical institution and potentially in populations facing barriers to health care access raises the question of how to manage incidental findings (IFs) that may warrant clinical workup. Researchers should not withhold information about IFs from historically excluded and underserved population when members consent (...) to receive it, and instead should facilitate access to information and a pathway to clinical care. (shrink)

Background The field of nursing has long been concerned with ethical issues. The history of the nursing profession has a rich legacy of attention to social justice and to societal questions regarding issues of fairness, access, equity, and equality. Some nurses have found that their clinical experiences spur an interest in ethical patient care, and many are now nurse bioethicists, having pursued additional training in bioethics and related fields (e.g., psychology, sociology). Purpose The authors describe how the clinical and research (...) experiences of nurses give them a unique voice in the field of bioethics. Results Authors present reasons for the relative invisibility of nurse bioethicists, compared with physician, theologian, or philosopher bioethicists, as well as current efforts to increase the visibility of nurse bioethicists. They also describe four specific areas where nurse bioethicists have made and continue to make important contributions: as ethics consultants to colleagues in hospitals and other settings; as bioethics researchers or as advisers to researchers conducting trials with human subjects; as educators of trainees, patients and families, healthcare providers, and the public; and in helping to draft humane and ethical policies for the care of vulnerable patients and underserved populations. Conclusion Nurse bioethicists are central to the future goals of healthcare bringing a unique perspective to the day-to-day ethical challenges of both clinical care and research, as well as to the education of health professionals and the public. (shrink)

Approximately 20% of adult cancer patients are eligible to participate in a clinical trial, but only 2.5-9% do so. Accrual is even less for minority and medically underserved populations. As a result, critical life-saving treatments and quality of life services developed from research studies may not address their needs. This study questions the utility of the bioethical concern with therapeutic misconception (TM), a misconception that occurs when research subjects fail to distinguish between clinical research and ordinary treatment, and (...) therefore attribute therapeutic intent to research procedures in the safety net setting. This paper provides ethnographic insight into the ways in which research is discussed and related to standard treatment. (shrink)

Start Exercising Your Brain Now: 201 Word and Number Exercises to Challenge Your Memory, Reasoning, Visual-Spatial Skills, Vocabulary, and More! Keep your brain active, even with MCI. For adults with Mild Cognitive Impairment, brain exercises are the best way to stay sharp and delay the onset of dementia. That’s why cognitive specialist Dr. Tonia Vojtkofsky tailored this fun workbook specifically for people with MCI. It’s the first of its kind! Find a word that meets the definition and contains the letters (...) “CAN” Truthful; straightforward; frank A brown nut with an edible kernel A cylinder black of wax with a wick Pick the one statement that is correct: UWYVX V is right of X. W is right of V. V is between U and Y. Y is right of W. Find and complete the pattern: 5, 8, 12, 17, 23, _____, _____, _____, _____. 14, 56, 224, 896, _____, _____, _____, _____. 5, 15, 30, 90, 180 _____, _____, _____, _____. Plus: Complete the word, image recall, determine the order, matching, true or false, logic problems, decode using clues, trivia, discover the pattern, word mazes, and math games. “The idea for the book originated from my need to provide appropriate brain exercises for my clients who have MCI. All of the brain-exercise books on the market today are for people with no cognitive impairment and therefore were too hard for my clients. I knew that I had to provide something for this underserved population.”—Dr. Tonia Vojtkofsky. (shrink)

This study investigated the relationship between concussions and medication adherence among 247 adults experiencing homelessness in Oklahoma City, Oklahoma, who were prescribed medication for a psychiatric disorder. Participants were asked whether they had “ever experienced a blow to the head that caused a concussion,” and medication adherence was measured by asking participants whether they had taken their psychiatric medication yesterday. The data were analyzed using univariate and multivariable logistic regressions. Results showed that more than half of the sample had a (...) concussion history, and homeless adults with a concussion history had higher odds of non-adherence to psychiatric medications compared with those who reported no concussion history [OR = 2.13 ]. Findings suggest that medication non-adherence is associated with incurred concussions. Raising awareness among service providers of the relationship between traumatic brain injury and medication adherence may increase efforts to improve adherence in this underserved population. (shrink)

Researchers conducting large community-based studies among underserved populations may collect data on health conditions that are little-acknowledged in the local setting, and for which there are few if any services for referral of participants who need follow-up diagnosis and care. In the design and planning of studies for such settings, investigators and research ethics committees may struggle to determine what constitutes effective referral and whether it is reasonably available. We offer a guiding framework for referral planning, informed by (...) our experiences of research in the field and of service on research ethics committees, to support evaluation of local referral resources and consideration of the benefits, burdens and risks of referral in the local setting. The framework addresses both the impact of referral on the well-being of the people who would be referred and the impact that referral of study participants would have on local people outside the study. We use a sustained discussion of three field-based case examples to illustrate the ethical concerns at issue and to demonstrate the use of the referral planning framework. (shrink)

Open peer commentary on the article “Heterarchical Reflexive Conversational Teaching and Learning as a Vehicle for Ethical Engineering Curriculum Design” by Philip Baron. Upshot: Philip Baron focuses on changing university curricula in South Africa to enable students to succeed who do not share the culture, expectations, and experience of their teachers. With increasing need and desire for more education worldwide, his article is relevant to university education in all countries, especially in those with underserved populations. This commentary focuses (...) on the factors Baron describes which can be generalized to all university education. (shrink)

Within the context of global health development approaches, surgical missions to provide care for underserved populations remain the least studied interventions with regard to their methodology. Because of the unique logistical needs of delivering operative care, surgical missions are often described solely in terms of cases performed, with a paucity of discourse on medical ethics. Within surgery, subspecialties that serve patients on a non-elective basis should, it could be argued, create mission strategies that involve a didactic approach and (...) the propagation of sustainable surgical care. The ethical considerations have yet to be described for paediatric neurosurgical outreach missions. We present here the perspectives of neurosurgeons who have participated in surgical outreach missions in Central America, South America, Eastern Europe and sub-Saharan Africa from the vantage point of both the visiting mission team and the host team that accommodates the mission efforts. (shrink)

Growing opioid misuse in the United States has resulted in more children living with an adult with an opioid use history. Although an abundance of research has demonstrated a link between opioid misuse and negative parenting behaviors, few intervention efforts have been made to target this underserved population. The Family Check-Up has been tested in more than 25 years of research, across multiple settings, and is an evidence-based program for reducing risk behavior, enhancing parenting skills, and preventing the onset (...) of substance use. It is designed to motivate parents to engage in positive parenting practices and to change problematic parenting and has been tested across a variety of ages including early childhood and adolescence. It is highlighted in NIDA’s Principles of Substance Use Prevention for Early Childhood: A research-based guide as one of only three effective selective prevention programs for substance abuse among families with young children. Recently, we developed an online version of the FCU that has now been adapted for early childhood and families with opioid use histories. The online platform and telehealth model allow for wide-scale dissemination, ease of training with community providers, and increased public health reach for families in remote, rural areas. This is particularly important when targeting families with opioid misuse and addiction because there are high rates of addiction in remote areas, yet few services available. In this article, we describe the FCU Online and review new content in the model that targets a population of young adult parents with substance abuse histories, including opioid use. New modules include content focused on harm reduction for this high-risk population of parents, such as safety in the home, substance use while parenting, and managing conflict with partners and friends. (shrink)

PrécisFederally Qualified Health Centers (FQHCs) proved to be critical points of access for people of color and other underserved populations during the COVID-19 pandemic, administering 61% of their COVID-19 vaccinations to people of color, compared to the 40% rate for the overall United States’ vaccination effort. To better understand the approaches and outcomes of FQHCs in pandemic response, we conducted semi-structured interviews with FQHC health care providers and outreach workers and analyzed them using an inductive qualitative methodology.

We are in the midst of a crisis of climate change and environmental degradation that will only get worse, unless significant changes are rapidly made. Globally, the healthcare sector causes a large share of our total environmental footprint: 4.4% of greenhouse gases. Sustainable healthcare has emerged as a way for healthcare sectors in high‐income countries to help mitigate climate change by reducing their emissions. Whether global health should be sustainable and what ethical grounds might exist to support such a claim (...) are not questions that have been investigated. The paper argues that global health practice—the delivery of health services to underserved populations in resource‐poor areas of the world—should be sustainable as a matter of climate justice and solidarity. Reducing climate change‐related risks and harms for the vulnerable is integral to the mission of global health and thus it is necessary to consider the climate impact of its practice. The field has a duty to provide sustainable health services that are responsive to climate change‐related changes in the local burden of disease and to build sustainable health system infrastructure. Specific responsibilities for global health funders, managers, and implementers to uphold the duty are proposed. To conclude, the paper considers what limits might be placed on the duty to deliver sustainable global healthcare. (shrink)

Founded on a commitment to social justice and health equity, community health centers in the United States provide high‐quality primary care to underserved populations and address social drivers of health disparities. Through an examination of two books on the history of community health centers, Peace & Health: How a Group of Small‐Town Activists and College Students Set Out to Change Healthcare, by Charles Barber, and Community Health Centers: A Movement and the People Who Made It Happen, by Bonnie (...) Lefkowitz, this essay provides insight into what it takes to center social justice in community‐based health care organizations. As bioethics reorganizes itself around an emphasis on justice, scholars in bioethics have much to learn from colleagues in community health. (shrink)

Psychologists have long been concerned with the welfare and competent treatment of underserved populations. However, terminology used in psychological research is not always conducive to cultural sensitivity. This article discusses why the term “non-white” may be less sensitive to diverse populations and provides practical alternatives to this nomenclature. In addition, the authors examine the literature from 2008 to 2012 to establish whether the term “non-white” is still used to describe populations in psychological research. The article concludes (...) with several recommendations for how researchers could choose to proceed in regards to identifying populations using culturally sensitive and relevant language. (shrink)

Farmers, especially those within historically underserved populations, utilize networks to access educational training, community support, and market opportunities. Through a case study of the Pennsylvania Women's Agriculture Network's three-year Women's Rural–Urban Network (WRUN) initiative, this research analyzes the process of developing solidarity across geographic and racial lines while building a statewide farmers' network. Applying White's (2018) Collective Agency Community Resilience (CACR) theoretical framework to this initiative offers a way to evaluate how socially marginalized groups in agriculture build farmers’ (...) networks to resist oppression within the white heteropatriarchal agricultural system. This research draws on interviews with 12 steering committee members and three years of participant observation to understand how participants assessed the initiative. Findings suggest that changes to existing programming were influential in creating a place for diverse women farmers and growers to meet, thus contributing to prefigurative politics; however, the inability to form commons as praxis and economic autonomy due to divergent needs, varying roles in the agrifood system, and different levels of engagement with racial justice deterred network-building efforts. This initiative examines food justice theory through praxis. Findings offer insights for predominately white non-profits, research institutions, and activists in future anti-racism and food justice efforts in the agrifood system. (shrink)

Ram Dass is one of America's most renowned spiritual teachers. Born Richard Alpert, he received his Ph.D. in psychology from Stanford University and taught there and at Harvard University before going to India and receiving the name Ram Dass () from his guru. He has long been involved in many charitable service organizations, particularly those devoted to providing healthcare for underserved populations. Among his many books are BeHereNow, HowCanIHelp, and CompassioninAction; his newest book is StillHere:EmbracingAging,Changing,andDying.

Given recent legal developments in the United States, now is a critical time to draw attention to how ‘conscientious objection’ is sometimes used by health care providers to discriminate against the LGBTQ community. We review legal developments from 2019 and present several cases where health care providers used conscientious objection in ways that discriminate against the LGBTQ community, resulting in damaged trust by this underserved population. We then discuss two important conceptual points in this debate. The first involves the (...) interpretation of discrimination (provider versus patient-centered views), and we argue for a patient-centered view; the second involves the use of the people versus procedure distinction to reach a compromise between LGBTQ individuals and the clinicians who do not want to treat them. We argue the distinction is problematic when applied to treatment of the LGBTQ population. (shrink)

We explore whether digital inclusion, a public policy designed to provide high-speed internet infrastructure for historically digitally excluded populations, is associated with the social and ethical challenge of financial inclusion. Using evidence from a sizable P2P lender in the U.S., we document that digital inclusion is positively associated with P2P lending penetration and that this relation is more pronounced in counties with limited commercial bank loan penetration and higher minority populations. Our new evidence from cross-sectional tests suggests that (...) digital inclusion plays a key role in financial inclusion, particularly in regions with more vulnerable and/or underserved populations. In consequence tests, we document that high-risk borrowing is less likely to be denied in counties with higher digital inclusion and that digital inclusion is positively associated with P2P lending efficiency in the form of more repeated borrowing, decreased funding time, and improved funding fulfillment. In addition, we show that the availability of alternative information, a plausible channel through which digital inclusion is related to financial inclusion, is positively associated with efficiency in P2P lending. Our findings indicate that digital inclusion can empower financial service providers and other stakeholders to collaboratively fulfill their ethical and social responsibilities to meet the financial needs of historically marginalized groups. (shrink)

We explore whether digital inclusion, a public policy designed to provide high-speed internet infrastructure for historically digitally excluded populations, is associated with the social and ethical challenge of financial inclusion. Using evidence from a sizable P2P lender in the U.S., we document that digital inclusion is positively associated with P2P lending penetration and that this relation is more pronounced in counties with limited commercial bank loan penetration and higher minority populations. Our new evidence from cross-sectional tests suggests that (...) digital inclusion plays a key role in financial inclusion, particularly in regions with more vulnerable and/or underserved populations. In consequence tests, we document that high-risk borrowing is less likely to be denied in counties with higher digital inclusion and that digital inclusion is positively associated with P2P lending efficiency in the form of more repeated borrowing, decreased funding time, and improved funding fulfillment. In addition, we show that the availability of alternative information, a plausible channel through which digital inclusion is related to financial inclusion, is positively associated with efficiency in P2P lending. Our findings indicate that digital inclusion can empower financial service providers and other stakeholders to collaboratively fulfill their ethical and social responsibilities to meet the financial needs of historically marginalized groups. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Working on the Clinton Administration's Health Care Reform Task ForceNancy Neveloff Dubler (bio)This narrative is based on my understanding of the elements of the Health Security Act that may have ethical implications. I have reconstructed these elements from my experience on the Health Care Reform Task Force and they are part of the health care plan that the President presented to Congress. (At the time this article went to (...) press, the actual legislation, which should answer my remaining specific questions more clearly, had not yet been released.) I perceive the most important features of the plan to be:• The legislation will create a "right" to health care for all citizens—access to care will be universal;• The plan will involve some form of managed competition in which groups of providers (called Approved or Accredited Health Plans (AHPs)) will offer comparable benefit packages at slightly (or widely) different costs;• The AHPs will negotiate with the Health Alliance (HA) to determine the price that they will charge their consumer-patients;• There will be open enrollment with no barriers to coverage, such as exclusions for pre-existing conditions;• Community rating will be in effect in different localities and enrolled persons in any AHP will pay the same premium;• The coverage for any enrolled person will be portable;• The overall structure will be a cooperative federal/state enterprise in which the states will have quite extensive abilities to fashion variations of the basic plan to meet their particular needs;• Primary care will be encouraged and incentives for physicians to train in primary care specialties provided;• Non-physician providers will be central to the functioning of the health care plans;• Efforts will be made to develop a "person power" pool so that people with an abstract "right" to health care will have real access to providers, in their localities, who can fulfill the promise that the right creates; [End Page 421]• The goal of cost containment will be central to the organization and regulation of the system;• Administrative simplicity and quality protections will be central.Co-chairing the Bioethics Working Group (BWG) of the White House Task Force on Health Care Reform was a unique experience. Approximately 40 Task Force working groups were established by Hillary Rodham Clinton, the President, and the senior Task Force staff. Various members of the President's office and other knowledgeable members of the Executive Branch selected the participants. In our group, appointments were made largely on the recommendations of the co-chairs. The BWG, among the last of the groups formed, carried the official name "The Working Group on the Ethical Foundations of the New System" and was jointly led by me and Marion Gray Secundy, a Professor of Bioethics at Howard University. The fact that the leadership of the Task Force saw fit to establish such a group, thereby confirming that bioethics is a player in the arena of health care policy, was in itself significant and was made no less so by the lack of clarity regarding the group's aims and goals.The working groups of the Task Force were organized into clusters, determined by the relatedness of the somewhat distinct, but always overlapping, content of their investigations. Separate clusters and working groups, for example, looked at mental health, long term care, and the benefit package and coverage for low-income and non-working families. On this last issue there was also a working group that explored health policy initiatives for underserved populations. This multiple focus on related issues proved to be an excellent method for ensuring that the complexity of these topics was sufficiently explored. There was a published schedule for when these groups met together, and members of other groups who had similar or overlapping concerns were invited to attend and to participate.Every week or so, all of the working groups reported to the Task Force leadership, under the direction of Ira Magaziner, in a process called a "tollgate." Prior to the tollgate, the working groups were required to submit formal written analyses of the problems they had most recently been considering. Copies of these documents were placed in a special room so that those who were interested could review... (shrink)

Providing therapy to deaf clients raises important ethical considerations for psychologists related to competence; multiple relationships and boundary issues; confidentiality; assessment, diagnosis, and evaluation; and communication and using interpreters. In evaluating and addressing these, psychologists must consider the American Psychological Association’s Ethics Code and other relevant issues necessary to provide ethical treatment. The current article provides background, ethical considerations, principles and standards relevant to the treatment of deaf clients, and recommendations to support psychologists, training programs, and the field. Psychologists have (...) the responsibility to guarantee that the benefits of mental health treatment are fairly and justly provided to this traditionally underserved population. (shrink)

Health innovation is mainly envisioned in direct connection to medical research institutions or pharmaceutical and technology companies. Yet, these types of innovation often do not meet the needs and expectations of individuals affected by health conditions. With the emergence of digital health technologies and social media, we can observe a shift, which involves people living with illness modifying and improving medical and health devices outside of the formal research and development sector, figuring both as users and innovators. This patient‐led innovation (...) has been celebrated in innovation studies and economics as a “bottom‐up” type of innovation. In this article, we take a closer look at open‐source patient‐led innovation in the context of type 1 diabetes care. In our inquiry, we pay particular attention to the social and ethical dimensions of this innovation, building on empirical material. Upon exploring the notion of patient‐led innovation and its socio‐political context through the lens of intersectional and global health justice, we argue that a proactive strategy is needed to ensure that open‐source patient‐led innovation will be more globally accessible, center the health needs of the most underserved populations, as well as facilitate equitable and just health benefits. To support this aim, we provide a range of examples of different initiatives addressing the persistent inequalities that have so far inhibited patient‐led innovation from more fully materializing its innovative potential. (shrink)

This paper considers the ethical risks and opportunities presented by generalist medical artificial intelligence (GMAI), a kind of dynamic, multimodal AI proposed by Moor et al. (2023) for use in health care. The research objective is to apply widely accepted principles of biomedical ethics to analyze the possible consequences of GMAI, while emphasizing the distinctions between GMAI and current-generation, task-specific medical AI. The principles of autonomy and health equity in particular provide useful guidance for the ethical risks and opportunities of (...) novel AI systems in health care. The ethics of two applications of GMAI are examined: enabling decision aids that inform and educate patients about certain treatments and conditions, and expanding AI-driven diagnosis and treatment recommendation. Emphasis is placed on the potential of GMAI to improve shared decision-making between patients and providers, which supports patient autonomy. Another focus is on health equity, or the reduction of health and access disparities facing underserved populations. Although GMAI presents opportunities to improve patient autonomy, health literacy, and health equity, premature or inadequately regulated adoption of GMAI has the potential to compromise both health equity and patient autonomy. On the other hand, there are significant risks to health equity and autonomy that may arise from not adopting GMAI that has been thoroughly validated and tested. A careful balancing of these risks and benefits will be required to secure the best ethical outcome, if GMAI is ever employed at scale. (shrink)

Artificial intelligence holds great promise for improved health‐care outcomes. But it also poses substantial new hazards, including algorithmic discrimination. For example, an algorithm used to identify candidates for beneficial “high risk care management” programs routinely failed to select racial minorities. Furthermore, some algorithms deliberately adjust for race in ways that divert resources away from minority patients. To illustrate, algorithms have underestimated African Americans’ risks of kidney stones and death from heart failure. Algorithmic discrimination can violate Title VI of the Civil (...) Rights Act and Section 1557 of the Affordable Care Act when it unjustifiably disadvantages underserved populations. This article urges that both legal and technical tools be deployed to promote AI fairness. Plaintiffs should be able to assert disparate impact claims in health‐care litigation, and Congress should enact an Algorithmic Accountability Act. In addition, fairness should be a key element in designing, implementing, validating, and employing AI. (shrink)

In response to a global population with increasingly complex issues at the end of life, a movement in the U.S. has emerged incorporating doulas into end-of-life care. These end-of-life (EOL) doulas are not just focused on the quality of life, but also the quality of death. Like birth doulas, who provide support for pregnant patients and their families, EOL doulas help alleviate physical and mental discomfort in those who are dying. In this paper, we explore the role of EOL doulas (...) in improving the care of unrepresented patients, who lack decision-making capacity and have no surrogates or documents to guide their healthcare decisions. We argue that EOL doulas may help this traditionally underserved population experience a “good death” by answering several ethical and procedural challenges. As quasi-independent, non-medical members of the healthcare team, they provide a balancing, advocating voice on behalf of the patient, and may also help reduce inappropriate treatment, delays in care, and the overburdening of the public guardianship system. As such, attention should be given to formally defining their place within the healthcare infrastructure. Ultimately, we contend that EOL doulas are key to ensuring optimal, ethical care for unrepresented patient populations. (shrink)

Although bedbug infestation is not a new public health problem, it is one that is becoming more alarming among healthcare professionals, public health officials, and ethicists given the magnitude of patients who may be denied treatment, or who are unable to access treatment, especially those underserved populations living in low income housing. Efforts to quarantine and eradicate Cimicidae have been and should be made, but such efforts require costly interventions. The alternative, however, can further exacerbate the already growing (...) problems of injustice, i.e., unfair treatment of patients, inaccessibility of needed resources. In the following paper, I examine the ramifications of denying access to medical care, among other healthcare justice dilemmas surrounding bedbug infestations. I also explore the value of health, and how healthcare professionals and public officials often feel as though bedbugs are not a priority because they, themselves, are not diseases, regardless of the fact they cause physical and mental problems that affect a person’s health. I propose recommendations for improving the health and well-being of those vulnerable populations who are facing a difficult and growing public health problem that is currently being ignored in medical and public health ethics literature, regardless of increased media attention and unusual habitats of localized infestations, e.g., Statue of Liberty, New York City. (shrink)

The public responsibilities of nonprofit hospitals have been contested since the advent of the 1969 community benefit standard. The distance between the standard's legal language and its implementation has grown so large that the Internal Revenue Service issued a new reporting form for 2008 that is modeled on the Catholic Health Association's guidelines for its member hospitals. This article analyzes the appearance of an emerging moral consensus about community benefits to argue against a strict charity care mandate and in favor (...) of directing efficient care delivery and healthy community initiatives to underserved populations. The analysis turns on three moral conceptions of community benefits, the social contract model of hospital critics and the common good and covenantal models of Catholic and Jewish hospitals. (shrink)

In the United States, food banks served an estimated 46 million people in 2015. A combination of government policy reforms and political economic trends contributed to the rising numbers of individuals relying on private food assistance in the US, the United Kingdom and other high-income countries. Although researchers frequently map urban food environments, this project is one of the first to map private food assistance and potential need at the census-tract scale. We utilize Geographic Information Systems, demographic data, and food (...) assistance locations to develop a rapid assessment tool that could support food banks, pantries, soup kitchens, and government agencies that seek to answer the question of whether people with the greatest need have food distribution sites in close proximity. We define access based on distance and then calculate potential food insecurity using either poverty rates or a food insecurity index. We apply these methods in a case study analysis of Santa Clara County, California. Our findings suggest that food assistance distribution locations match the areas of potential need in more than 80% of urban census tracts. However, there are several potentially underserved locations and populations that could benefit from new food assistance operations. The poverty and index-based approaches show significant spatial overlap in mapped areas of high food insecurity and low access. The poverty only approach produces a higher estimate of food insecurity rates, is easier to calculate, and draws attention to the need to address poverty as a root cause of hunger. (shrink)

Transplantation programs commonly rely on clinicians’ judgments about patients’ social support (care from friends or family) when deciding whether to list them for organ transplantation. We examine whether using social support to make listing decisions for adults seeking transplantation is morally legitimate, drawing on recent data about the evidence-base, implementation, and potential impacts of the criterion on underserved and diverse populations. We demonstrate that the rationale for the social support criterion, based in the principle of utility, is undermined (...) by its reliance on tenuous evidence. Moreover, social support requirements may reinforce transplant inequities, interfere in patients’ personal relationships, and contribute to biased and inconsistent listing procedures. As such, accommodating the needs of patients with limited social support would better balance ethical commitments to equity, utility, and respect for persons in transplantation. We suggest steps for researchers, transplantation programs, and policymakers to improve fair use of social support in transplantation. (shrink)

"The largest Ebola outbreak to date—first detected in December 2013 and still ongoing as of April 2015—has cast new light on the shortfalls of international public health systems.1 As in previous health crises, scrutiny has reemerged over the pharmaceutical industry’s ability and willingness to innovate new medicines for underserved disease areas. The public debate has intensified following revelations that promising drug candidates to treat Ebola had gone undeveloped despite compelling preclinical results.2 This lack of development is especially troubling because (...) it occurred after a recently implemented U.S. incentive scheme—the Food and Drug Administration’s (FDA) tropical disease priority review voucher program—designed to counteract exactly this problem. Taking Ebola as a case in point, it is useful to examine the short history and ongoing refinement of this voucher program, since it represents one of the most significant legislative efforts to systematically address the relative absence of com- mercial rewards for drugs targeting tropical diseases. This analysis evaluates the voucher program’s effectiveness for both stimulating private sector innovation and achieving positive health impacts among populations most severely burdened by tropical diseases. It then proposes specific recommendations for how law- makers can improve the program’s legislation to better achieve these objectives. ". (shrink)

This article uses the theoretical construct of Social Representations to investigate how Community Multimedia Centers (CMCs) – venues that offer public access to Information and Communication Technologies (ICTs) to underserved communities – are perceived by communities in Mozambique, and it discusses how the local population understands these venues as means to foster community empowerment and socio-economic development. In total, 113 participants took part in the study, from six CMCs in different towns of Mozambique. Participants were represented from three different (...) social groups, according to their use of the CMC: staff members, users of both CMC components – telecenter and radio – and radio-only users. The article analyses the Social Representations’ structure, using a Prototypical approach. Findings show that CMCs are seen by local communities as places at which they can receive and exchange information, and also as learning spaces, with the telecenter part focused on the delivery of ICT training and the radio component engaging with educational activities and services in a broader sense. Furthermore, CMCs are perceived as places dedicated almost exclusively to children and young people. The results of this study can help policy makers, practitioners, funding agencies and other relevant stakeholders to improve Mozambican CMCs and leverage their community empowerment potential. (shrink)

The U.S. Supreme Court's seminal 1978 Bakke decision, now 25 years old, has an ambiguous and endangered legacy. Justice Lewis Powell's opinion provided a justification that allowed leaders in medical education to pursue some affirmative action policies while at the same time undermining many other potential defenses. Powell asserted that medical schools might have a "compelling interest" in the creation of a diverse student body. But Powell's compromise jeopardized affirmative action since it blocked many justifications for responding to increases in (...) political opposition and legal challenges. The Bakke decision and itsmoral background and legal legacy are traced and analyzed. Despite recent legal setbacks, the framework sketched by Powell can be used to defend diversity inmedical education bothmorally and legally as a "compelling state interest." Because trust is a central component of the physician-patient relationship and a prerequisite to the profession's ability to provide effectivemedical care, the state has a compelling interest in training physicians with whom patients can feel comfortable and safe if the population is distrustful; underserved; faces significant discrimination in the allocation of benefits, goods and services and affirmative action programs would be likely to promote their trust in the system. Similar narrowly-tailored arguments could be used in other professions and for other groups. Bakke is an important background for the pending Grutter case. (shrink)

This article illustrates how a collaborative research process can successfully engage an underserved minority community to address health disparities. Pacific Islanders, including the Marshallese, are one of the fastest growing US populations. They face significant health disparities, including extremely high rates of type 2 diabetes. This article describes the engagement process of designing patient‐centered outcomes research with Marshallese stakeholders, highlighting the specific influences of their input on a randomized control trial to address diabetes. Over 18 months, an interdisciplinary (...) research team used community‐based participatory principles to conduct patient‐engaged outcomes research that involved 31 stakeholders in all aspects of research design, from defining the research question to making decisions about budgets and staffing. This required academic researcher flexibility, but yielded a design linking scientific methodology with community wisdom. (shrink)

We live in the era of Facebook, Fitbit, and Skype. As such, it would be unreasonable to expect that the healthcare industry would not see the same kind of globalization as do our social spheres and consumer activities. Indeed, the explosion of information technology, the ease of transcontinental travel, and the emergence of a more globally aware citizenry allows for scientific collaboration that has had many positive effects on global health. However, the economic and structural disparities between systems of healthcare (...) delivery in the industrialized world and parts of the developing world have created a monster in the form of an international medical tourism industry that endangers the health and safety of citizens of the host country as well as visiting patients. Not only does the practice of medical tourism pose a practical danger to those in direct contact with the industry, but it brings up troubling philosophical problems centering on national responsibility and the commodification of healthcare, among other important issues. In the United States, the driving force behind international medical tourism is the exorbitant cost of healthcare, particularly for the uninsured but also for the underinsured and those who experience catastrophic medical expenses from chronic illness or sudden health crises. Not only have individuals begun to look outside the U.S. for surgical procedures and other expensive therapies, but employers have begun to toy with the idea of outsourcing the medical care of the employees they insure in order to cut costs. In other industrialized nations, the issues that underpin international medical tourism are related to healthcare rationing and reflect different shortcomings in the delivery of healthcare in those nations, such as the United Kingdom and Canada, that have single-payer systems. Yet the regulatory and philosophical implications for both patients and hosts of international healthcare are largely the same. The challenge of regulating international trade in medical care is obvious and becomes particularly acute when there are insurers and employers involved. Complicating matters further, medical care that takes place outside the country of origin of the patient is often brokered by “medical concierge services,” which, though quick to claim indemnity from any harm arising from substandard or inappropriate medical care, cannot be divorced from responsibility for the health outcomes of their clients. Agreements hashed out between concierge services and patients specify that any remedy for harm stemming from their medical care must be pursued within the confines of the law of the host country, but the practical implications of this are troublesome. How can a foreign patient—often without either linguistic or cultural competency in the host country—be expected to navigate the complexity of a foreign legal system, particularly one that may be far less developed than his home country? Furthermore, if insurance companies and employers are involved with such care, who pays for an adverse result or determines responsibility for harm that may befall the patient? Under which countries’ laws? If a patient travels to Singapore for sexual reassignment surgery or a cardiac valve repair, returns to the States and suffers complications, who pays for the restoration of her health? Beyond legal standards and judicial remedies for harm to patients seeking care on the international market, there is the question of what ethical standards and norms apply to such patients. What effect does it have on American patients, for example, to receive care within a system that does not emphasize autonomy and informed consent the way they are used to? Why should foreign physicians care about the cultural mores of their patients’ country of origin? Can they be expected to grasp cultural differences between American, Canadian, and British patients? The medical concierge might respond, “Well, buyer beware!” This is unreasonable: It is nearly impossible for any patient to accurately assess the various options, risks and benefits that go with a particular medical treatment, much less the patient who is attempting to do so on the international market. And the crass invocation of the doctrine of caveat emptor betrays a view of healthcare as a commodity that is naive and inappropriate. Paramount in my mind, however, are the practical implications for the care of the citizens of developing nations that host international patients and the broader philosophical issue of what the goals of the medical profession as a whole and each country’s individual healthcare system should be. While I understand the argument that international medical tourism creates great economic gains for developing nations, which can then be channeled toward the care of their citizenry as a whole, there is much reason to doubt that this “trickle-down” model of economics provides real benefits for underserved, whether in healthcare or other arenas. What is more likely is that, while lucrative international “medi-cities” may keep bright doctors in their home countries, it is also likely to lure them away from the institutions that serve the lion’s share of their countrymen. With the concentration of talented native doctors in private hospitals that serve citizens of the developed world, the population at large is left to obtain care at institutions that suffer “brain drain” from the flight of talented local staff to more prestigious, often “brand name,” institutions that give them more Western-like salaries while allowing them to practice in their countries of origin. The very fact that citizens of the wealthiest nations in the world are forced to go abroad for life-saving care speaks to an abdication of national responsibility on the part of their home countries. The provision of health care is one of the principal responsibilities of any nation and it is unacceptable that a nation with the strength and wealth of the United States would take advantage of the weaker political and economic situations of developing nations in order to shirk its responsibility to its fellow citizens. If we take care of our countrymen and take pride in an equitable system of healthcare delivery, there will be no need to shrug our shoulders and say “Buyer beware” to the patient who heads to the Philippines for heart surgery. (shrink)

In this research we focus on ethnic minorities, one of the underserved groups in Europe. In particular, we address the internet use of Turkish ethnic children, aged 9 to 16, in several EU countries. We examine the extent to which they can be considered digitally disadvantaged when compared to the majority population in those countries. We also compare Turkish children living in Turkey to those in the diaspora as well as to the majority children living in those same European (...) countries. The data used for this analysis is part of the EU Kids Online research. Of the three groups of teenagers examined, those in the Turkish diaspora take a position in between their native European peers, who are the most fervent surfers on the internet, and the Turkish children living in Turkey, who use the internet least often. Generally speaking that is also true for online competencies and online activities. As far as exposure to online risks is concerned, European majority children are more familiar than the two other groups with receiving sex-related images and messages and with face-to-face meetings with online contacts. By contrast, children in the Turkish diaspora are relatively more familiar with cyberbullying. (shrink)

A growing proportion of clinical research funded by pharmaceutical companies, high-income country research agencies, and not-for-profit funders is conducted in low- and middle-income settings. Disparities in wealth and access to healthcare between the populations where new interventions are often tested and those where many of them are ultimately marketed raise concerns about exploitation. This chapter examines several ethical requirements frequently advanced as mechanisms for protecting research subjects in underserved communities from exploitation and evaluates the effectiveness of those mechanisms (...) as responses to exploitation worries. It goes on to highlight where the conceptual frameworks relied upon by research ethicists must be improved if we are to fully understand the nature of the moral claims and obligations that arise in research conducted in underserved communities. (shrink)

India is home to 243 million adolescents. Two million of them belong to Scheduled Tribes living in underserved, rural areas. Few studies have examined the health of tribal adolescents. We conducted a cross-sectional survey to assess the health, nutrition and wellbeing of adolescent girls in rural Jharkhand, eastern India, a state where 26% of the population is from Scheduled Tribes. We aimed to identify priorities for community interventions to serve adolescents and their families. Between June 2016 and January 2017, (...) interviewers visited all households in 50 purposively sampled villages of West Singhbhum district, Jharkhand. They aimed to interview all girls aged 10–19. Interviewers conducted face-to-face interviews with girls to administer a survey about physical and mental health, disability, nutrition, sexual and reproductive health, gender norms, decision-making, education and violence. Interviewers also measured girls’ height, weight, and Mid-Upper Arm Circumference. Interviewers collected data from 3324 of an estimated 4068 girls residing in the study area. Their mean age was 14.3. 82% were from Scheduled Tribes. 89% of younger girls aged 10–14 and 46% of older girls aged 15–19 were in school or college. Girls dropped out of school because they were required for household work or work on the family farm or business. Over a third reported symptoms of anaemia in the past month, but less than a fifth had a blood test. The prevalence of thinness was 14% for younger girls and 6% for older girls. 45% of girls were stunted. 40% reported emotional violence in the past year, 14% physical violence, and 0.7% sexual violence. 12% had problems associated with depression or anxiety. 30% aged 15–19 had heard of contraception. Among married girls and their husbands, only 10% had ever used methods to prevent or delay pregnancy. Our study identified several priorities to improve adolescent girls’ health, nutrition and wellbeing in largely tribal areas of Jharkhand: reducing violence, early marriage and undernutrition, as well as improving mental health, knowledge about contraception and school retention. (shrink)

During the coronavirus disease 2019 (COVID‐19) pandemic, bioethical analyses often emphasized population health and societal benefit. Hospital policies frequently focused on reducing risk of transmitting SARS‐CoV‐2 by restricting visitors; requiring protective equipment; and screening staff, patients and visitors. While restrictions can be burdensome, they are often justified as essential measures to protect the whole population against a virus with high rates of transmission, morbidity and mortality. Yet communities are not monolithic, and the impacts of these restrictions affect different groups differently. (...) An ophthalmological unit outreach program in Ethiopia serves to illustrate. Pre‐operative screening policies were designed to protect as many patients as possible but had adverse impacts on underserved communities. As this case study demonstrates, creating hospital policies that truly serve the good of the society may require a more holistic review of impacts on inequitably positioned communities. (shrink)

Narratives, also called stories, can be found in conversations, children’s play interactions, reading material, and television programs. From infancy to adulthood, narrative comprehension processes interpret events and inform our understanding of physical and social environments. These processes have been extensively studied to ascertain the multifaceted nature of narrative comprehension. From this research we know that three overlapping processes (i.e., knowledge integration, goal structure understanding, and causal inference generation) proposed by the constructionist paradigm are necessary for narrative comprehension, narrative comprehension has (...) a predictive relationship with children’s later reading performance, and comprehension processes are generalizable to other contexts. Much of the previous research has emphasized internal and predictive validity; thus, limiting the generalizability of previous findings. We are concerned these limitations may be excluding underrepresented populations from benefits and implications identified by early comprehension processes research. This review identifies gaps in extant literature regarding external validity and argues for increased emphasis on externally valid research. We highlight limited research on narrative comprehension processes in children from low-income and minority populations, and argue for changes in comprehension assessments. Specifically, we argue both on- and off-line assessments should be used across various narrative types (e.g., picture books, televised narratives) with traditionally underserved and underrepresented populations. We propose increasing the generalizability narrative comprehension processes research can inform persistent reading achievement gaps, and have practical implications for how children learn from narratives. (shrink)

There has been a recent explosion of undergraduate philosophy conferences across the United States. In this paper, we explore undergraduate conferences along three lines. First, we argue that, as a well-designed learning activity, undergraduate conferences can serve to increase gender parity in philosophical spaces—a widely accepted and important goal for our discipline. Second, we argue that this increase in parity is due, at least in part, to the proper design of undergraduate conferences as High-Impact Practices. Our empirical work on our (...) own undergraduate conference demonstrates that properly designing the conference as a High-Impact learning activity does, as expected, benefit underserved student populations, including women. Additionally, the study also revealed unexpected opportunities to intervene on student learning. Third, we argue, also in line with our data, that undergraduate conferences occupy a previously taxonomically unrecognized grouping among recognized High-Impact Practices. (shrink)

Several contributions in this book tell of doctors' increasing emigration from developing countries where they are in critical shortage, especially from the underserved rural and public sectors of countries in sub-Saharan Africa (SSA) and South Asia. They point out the severe harm from that migration to some of the world's poorest and sickest populations who have no other doctors to turn to, and gain little from their emigration. Since significant harm to the badly off is bad, decline in (...) that migration is usually a good development. But how to strive to achieve it? (shrink)