Health Care Injustice Research Articles

Global economic inequality and health

“Of all the forms of inequality, injustice in health care is the most shocking and inhumane.”- Martin Luther King Jr Martin Luther King Jr’s quote delineates the inhumanity of unjust and unequal he...

Striking the balance with epistemic injustice in healthcare: the case of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Miranda Fricker’s influential concept of epistemic injustice (Oxford University Press, Oxford, 2007) has recently seen application to many areas of interest, with an increasing body of healthcare research using the concept of epistemic injustice in order to develop both general frameworks and accounts of specific medical conditions and patient groups. This paper illuminates tensions that arise between taking steps to protect against committing epistemic injustice in healthcare, and taking steps to understand the complexity of one’s predicament and treat it accordingly. Work on epistemic injustice is therefore at risk of obfuscating legitimate and potentially fruitful inquiry. This paper uses Chronic Fatigue Syndrome/Myalgic Encephalomyelitis as a case study, but I suggest that the key problems identified could apply to other cases within healthcare, such as those classed as Medically Unexplained Illnesses, Functional Neurological Disorders and Psychiatric Disorders. Future work on epistemic injustice in healthcare must recognise and attend to this tension to protect against unsatisfactory attempts to correct epistemic injustice.

“What if There's Something Wrong with Her?”‐How Biomedical Technologies Contribute to Epistemic Injustice in Healthcare

AbstractWhile there is a steadily growing literature on epistemic injustice in healthcare, there are few discussions of the role that biomedical technologies play in harming patients in their capacity as knowers. Through an analysis of newborn and pediatric genetic and genomic sequencing technologies (GSTs), I argue that biomedical technologies can lead to epistemic injustice through two primary pathways: epistemic capture and value partitioning. I close by discussing the larger ethical and political context of critical analyses of GSTs and their broader implications for just and equitable healthcare delivery.

The Ethics of Universal Health Insurance

The Ethics of Universal Health Insurance

How Biomedical Technologies Harm Patients as Knowers

While there is a steadily growing literature on epistemic injustice in healthcare, there are few discussions of the role that biomedical technologies play in harming patients in their capacity as knowers. Through an analysis of newborn and pediatric genetic and genomic sequencing technologies (GSTs), I argue that biomedical technologies can lead to epistemic injustice through two primary pathways: epistemic capture and value partitioning. I close by discussing the larger ethical and political context of critical analyses of GSTs and their broader implications for just and equitable healthcare delivery.

Solidarity and the problem of structural injustice in healthcare

The concept of solidarity has recently come to prominence in the healthcare literature, addressing the motivation for taking seriously the shared vulnerabilities and medical needs of compatriots and for acting to help them meet these needs. In a recent book, Prainsack and Buyx take solidarity as a commitment to bear costs to assist others regarded as similar, with implications for governing health databases, personalized medicine, and organ donation. More broadly, solidarity has been understood normatively to call for 'standing with' or assisting fellow community members and possibly also distant others in regard to their needs, whether for its own sake or in order to realize the demands of justice. I argue here that the understanding of solidarity in the existing bioethics literature is unduly restricted by not sufficiently theorizing the notion of structural (or systemic) injustice and its import for understanding solidarity. Extending traditional conceptions of labor and social movement solidarity, I contrast unitary solidarity within a given group with 'networking solidarities' across groups. I analyze the meaning of structural injustice and its significance for solidarity, including countering institutionally entrenched inequalities and economic exploitation. I then apply this broadened conception to healthcare, discussing structural problems with the U.S. insurance system and the solidarity movements addressing its deficiencies. I analyze some natural disasters and global health challenges that were aggravated by structural injustices, along with the solidarity movements they engendered. Finally, I revisit the questions of governing health databases and of personalized medicine with the enlarged conception of solidarity in view.

From Impairment to Empowerment: A Longitudinal Medical School Curriculum on Disabilities.

All physicians will care for individuals with disabilities; however, education about disabilities is lacking at most medical schools. Most of the schools that do include such education exclusively teach the medical model, in which disability is viewed as an impairment to be overcome. Disability advocates contest this approach because it overlooks the social and societal contexts of disability. A collaboration between individuals with disabilities, educators, and physicians to design a medical school curriculum on disabilities could overcome these differences. A curriculum on disabilities for first- and second-year medical students was developed during the 2013-2014 academic year and involved a major collaboration between a medical student, medical educators, disability advocates, and academic disability specialists. The guiding principle of the project was the Disability Rights Movement motto, "Nothing about us without us." Two small-group sessions were created, one for each medical school class. They included discussions about different models of disability, video and in-person narratives of individuals with disabilities, and explorations of concepts central to social perceptions of disability, such as power relationships, naming and stigmatization, and disability as identity. According to evaluations conducted after each session, students reported positive feedback about both sessions. Through this curriculum, first- and second-year medical students learned about the obstacles faced by individuals with disabilities and became better equipped to understand and address the concerns, hopes, and societal challenges of their future patients. This inclusive approach may be used to design additional curricula about disabilities for the clinical and postgraduate years.

Healthcare injustice in patients with sickle cell disease

Purpose – The purpose of this paper is to detail experiences that sickle cell disease (SCD) patients associate with healthcare justice and injustice in pain control. Design/methodology/approach – A content analysis study of open-ended comments written by 31 participants who completed a 20-item healthcare injustice questionnaire-revised twice: once in reference to experiences with doctors and once in reference to experiences with nurses. Findings – Participants’ mean age was 33±10 years; most were African-Americans and women. Themes showed: the four domains of healthcare justice were represented in patients’ comments; examples of justice and injustice were provided; specific incidents and interactions with healthcare providers were memorable to patients; and setting was a factor important to healthcare experiences because expectations about services vary by setting. Research limitations/implications – Patients were self-selected. Future work will include qualitative interviews and focus groups to uncover more details about how patients experience healthcare injustice. Practical implications – Additional training is needed for SCD providers and about proper management of sickle cell pain; educational modules are also needed that address areas of healthcare injustice by patients. Originality/value – The authors are the first to report how patients define healthcare justice and injustice. Specific details about memorable SCD patient-provider interactions and pain control are described.

Epistemic Injustice and Illness.

This article analyses the phenomenon of epistemic injustice within contemporary healthcare. We begin by detailing the persistent complaints patients make about their testimonial frustration and hermeneutical marginalization, and the negative impact this has on their care. We offer an epistemic analysis of this problem using Miranda Fricker's account of epistemic injustice. We detail two types of epistemic injustice, testimonial and hermeneutical, and identify the negative stereotypes and structural features of modern healthcare practices that generate them. We claim that these stereotypes and structural features render ill persons especially vulnerable to these two types of epistemic injustice. We end by proposing five avenues for further work on epistemic injustice in healthcare.

Climbing Down the Ivory Tower: Challenging Racial Injustice Through Community Health

“Of all the forms of inequality, injustice in health care is the most shocking and inhumane.” Most of us know these famous words by Dr. Martin Luther King Jr. In fact, some of us even referenced them in our applications to graduate school. They stirred within us a call for action and allowed us to connect our fascinations with the human body, epidemiology, and biostatistics to a movement bigger than ourselves. For us, medicine and public health represented a means to an end – tools we would use to work towards our social justice goals as we sought to improve public health and reform the health care system from within.

Health care justice and its implications for current policy of a mandatory waiting period for elective tubal sterilization

Tubal sterilization during the immediate postpartum period is 1 of the most common forms of contraception in the United States. This time of the procedure has the advantage of 1-time hospitalization, which results in ease and convenience for the woman. The USCollaborative Review of Sterilization Study indicates the high efficacy and effectiveness of postpartum tubal sterilization. Oral and written informed consent is the ethical and legal standard for the performance of elective tubal sterilization for permanent contraception for all patients, regardless of source of payment. Current health care policy and practice regarding elective tubal sterilization for Medicaid beneficiaries places a unique requirement on these patients and their obstetricians: a mandatory waiting period. This requirement originates in decades-old legislation, which we briefly describe. We then introduce the concept of health care justice in professional obstetric ethics and explain how it originates in the ethical concepts of medicine as a profession and of being a patient and its deontologic and consequentialist dimensions. We next identify the implications of health care justice for the current policy of a mandatory 30-day waiting period. We conclude that Medicaid policy allocates access to elective tubal sterilization differently, based on source of payment and gender, which violates health care justice in both its deontologic and consequentialist dimensions. Obstetricians should invoke health care justice in women's health care as the basis for advocacy for needed change in law and health policy, to eliminate health care injustice in women's access to elective tubal sterilization.

Epistemic injustice in healthcare: a philosophial analysis.

In this paper we argue that ill persons are particularly vulnerable to epistemic injustice in the sense articulated by Fricker (Epistemic injustice. Power and the ethics of knowing. Oxford University Press, Oxford, 2007). Ill persons are vulnerable to testimonial injustice through the presumptive attribution of characteristics like cognitive unreliability and emotional instability that downgrade the credibility of their testimonies. Ill persons are also vulnerable to hermeneutical injustice because many aspects of the experience of illness are difficult to understand and communicate and this often owes to gaps in collective hermeneutical resources. We then argue that epistemic injustice arises in part owing to the epistemic privilege enjoyed by the practitioners and institutions of contemporary healthcare services--the former owing to their training, expertise, and third-person psychology, and the latter owing to their implicit privileging of certain styles of articulating and evidencing testimonies in ways that marginalise ill persons. We suggest that a phenomenological toolkit may be part of an effort to ameliorate epistemic injustice.

Health Care Reform 2010: A Landmark Achievement for the Future

Health Care Reform 2010:A Landmark Achievement for the Future Rahn K. Bailey, MD Introduction Good morning, President Robert M. Franklin of Morehouse College, Board of Trustees, Administrators, faculty, staff, alumni, students, and very importantly to the Class of 1986. As a 1986 alumnus, it brings me great honor and humility to present the 2012 Crown Forum Lecture at Morehouse College, the college known for producing physician leaders, such as former United States Surgeon-General Dr. David Satcher, and Dr. B.K. Edmond, our first MD/JD. I acknowledge your efforts in making Morehouse College what it is, and will continue to be. I pay tribute to you all for what you have done and continue to do, for molding and shaping so many lives, for continuing to inspire and motivate so many young people, for establishing a legacy that will forever endure. I remember Dr. Tom Blocker. I remember Dr. Frederick Map who pulled me aside and talked earnestly to me during our graduating banquet, assuring me that my future was bright, giving me reason to believe in myself. I thank you all very, very much. Let's talk about Health Care Reform It was the late Reverend Dr. Martin Luther King Jr. who in a 1966 speech to the Medical Committee for Human Rights said, "Of all the forms of inequality, injustice in health care is the most shocking and inhumane." Among the issues that I will address during my presidency of the National Medical Association (NMA), I have identified three key areas that will receive the highest priority. They are Health Care Reform, Disparities, and Stigma. Today I will focus primarily on Health Care Reform. What it is, what it means to YOU, African Americans, why the NMA supports it, and why all African Americans should support it. I speak about Health Care Reform in the context of my abiding principle in life, which is, "Where there are problems, let's solve them." The mission of the NMA is to advance the art and science of medicine for people of African descent through education, advocacy, and health policy. Further, its mission is to promote health and wellness, eliminate health disparities, and sustain physician viability. Although the NMA has focused primarily on health issues related to African Americans and medically underserved populations, its principles, goals, initiatives, and philosophy encompass all ethnic groups. As a result, the NMA promotes health care for all Americans. Personally, as a physician who has cared for the poor and underserved for over 22 years, I believe that health care should be a right for every American irrespective of race, ethnicity, gender, age, or socioeconomic status. [End Page 1] On November 4, 2008 we elected Barack Obama President of the United States. President Obama was sworn in on January 20, 2009 and on March 23, 2010 he signed into law the Patient Protection and Affordable Care Act (PPACA), also known as the Affordable Care Act (ACA). It is the landmark health care reform legislation of our generation. As an association, the NMA emphatically supports the Affordable Care Act. It was imperative that the government carry out this reform because the system we had in place was not efficient, not effective, and not equitable. As an example, I started my private practice in 1997. Prior to the ACA, as soon as a patient, for instance, an African American woman with her son, walked into my office, I knew that there was a 1-in-5 chance that they did not have health insurance. As I looked at her, I knew that there was a strong possibility that she worked but was indigent and lived below the poverty line. I would invite her in, knowing that if she had a major form of cancer, there was no guarantee I could promise her a better outcome than 10 years before, even though the cost of that care had grown to over twice what it was then. If she had cancer, I hoped she would be going against the trend, and have come in early, instead of delaying her visit because she could not afford to pay for a health screening visit. I would hope that the child...

Considering the Impacts of Health Disparities, Inequalities, and Inequities on Early Diagnosis of Pulmonary Arterial Hypertension

“Of all the forms of inequality, injustice in health care is the most shocking and inhumane.” – Dr. Martin Luther King, Jr. Early recognition, diagnosis, and treatment of pulmonary arterial hypertension (PAH) is a worthwhile endeavor in that it remains underdiagnosed in an era where 9 FDA-approved treatments are available, which have shown to provide clinical improvements and prolonged survival.1 Furthermore, despite the significant advances in understanding the etiology of PAH, the time from onset of symptoms to recognition of the disease has not improved over the past 2 decades, the delay of which results in progression of pathologic changes that are life threatening and irreversible when left untreated. This is particularly concerning in that the potential for optimal clinical outcomes and survival is diminished even after a 2-year delay in diagnosis.2 The aim of this article is to evaluate the current public health framework to highlight social determinants that influence and may result in barriers in achieving optimal health outcomes, with a focus on factors that may contribute to delayed diagnosis of PAH.3

Why Arboviruses Can Be Neglected Tropical Diseases

Why Arboviruses Can Be Neglected Tropical Diseases

The Liberty Principle and Universal Health Care

A universal entitlement to health care can be grounded in the liberty principle. A detailed examination of Rawls's discussion of health care in Justice as Fairness shows that Rawls himself recognized that illness is a threat to the basic liberties, yet failed to recognize the implications of this fact for health resource allocation. The problem is that one cannot know how to allocate health care dollars until one knows which basic liberties one seeks to protect, and yet one cannot know which basic liberties to protect until one knows how health care dollars will be allocated. The solution is to design the list of basic liberties and the health care system in tandem so as to fit each other, such that every citizen is guaranteed a set of basic liberties and access to the health services needed to secure them.

Justice as a Frame for Health Reform

Justice as a Frame for Health Reform Mary Crowley (bio) America is clamoring for health reform, but the current debate feels a bit like recitations of the tax code, with candidates from both parties arguing about mandates, tax credits, tax subsidies, market deregulation, and vouchers. Such a debate is more likely to make the American public's eyes glaze over than move it toward universal coverage. In this issue of the Report, David DeGrazia takes an important step toward a better debate. DeGrazia tries to defend a health care reform plan on specifically moral grounds, thereby making the debate turn on values. Unfortunately, he also gives up on the value most likely to win that debate. DeGrazia claims that a single-payer system with managed care is the "most cost-effective means of achieving the goals of health care and therefore is the most morally defensible." But cost-effectiveness does not have enough moral heft to effect change. Following Aristotle's axiom that "in justice is the whole of virtue," the best way to make the moral case is to appeal to justice. Bioethics can best contribute to health reform by insisting that this is the moral issue at stake, and that justice entails that health care become a right. DeGrazia considers and rejects this argument. He writes, "The strategy of justifying a health care reform plan on the basis of a theory of justice is undermined by persistent, deep disagreement even among reasonable people about which theory is best." That there is disagreement over theories of justice is certainly true, but that is not reason to throw up our hands. And DeGrazia does not escape disagreement anyway: as he notes, the reform he supports is closest to that endorsed by the Democratic candidates Dennis Kucinich and Mike Gravel, whose campaigns are widely seen as doomed. It is too soon to give up on justice as the best way to frame the health care reform debate. The way to do this is to build the argument around the injustice induced by the current system. As Supreme Court justice Potter Stewart famously wrote about the difficulty of defining obscenity, "I know it when I see it." Likewise, we do not need to agree on a theory of justice to be revolted by injustice. Framing is increasingly recognized as a valuable tool for garnering public attention and approbation. It is a device that some fundamentalists have used to great advantage, as when their side in the evolution debate successfully promoted "intelligent design." As the linguistics scholar George Lakoff writes in Don't Think of an Elephant: Know Your Values and Frame the Debate, "Frames are mental structures that shape the way we see the world. . . . In politics our frames shape our social policies and the institutions we form to carry out policies. To change our frames is to change all of this. Reframing is social change." Justice is a natural frame for American health reform. This nation was founded on the right to life, liberty, and the pursuit of happiness. Thomas Jefferson certainly saw health as necessary to that pursuit, writing in 1787, "Without health, there is no happiness." Our nation has a rich history of expanding rights, to include the right to a public education (which is perhaps most akin to the right to health care), the right to vote for women, the Civil Rights movement, the rights of the disabled, and gay rights. A right to health care, as a matter of justice, is a logical extension. As Dr. Martin Luther King, Jr.—arguably the American most identified with the expansion of rights—said, "Of all the forms of injustice, inequality in health care is the most shocking and in-humane." Past expansions of rights were rooted in stories of injustice that resonated with Americans to overcome initial resistance. Stories provide a good framing device—a hook that the audience can connect to. Rosa Parks' refusal to give up her seat on a bus to a white rider started the Montgomery Bus Boycott and launched King to prominence; the U.S. Congress called Parks "the mother of the Civil Rights movement." There are also compelling stories of health care injustice...

Did Health Care Injustice Fuel Rage, Riots?-Reply

In Reply. —There was unanimous consensus among health care leaders in Los Angeles County that the way the health care system there treats poor, inner-city populations contributed to the rage that fueled the riot or rebellion. However inflammatory and counterproductive this opinion might seem to Dr Copperman, it was nonetheless widely held by people with firsthand knowledge of the situation. And none of these sources intended their remarks as an indictment of caring physicians. There was also consensus among those endeavoring to address this problem that representatives from these underserved communities must have voice in how this problem is addressed. The representatives of these communities are hardly a faculty of the ignorant. They not only have as much right as any community in self-determination of their health care needs, they are best suited for the task because they understand their own communities better than any outsider ever could. Copperman's

Health care injustice fuels rage, riots

Health care injustice fuels rage, riots

Health Care Injustice Fuels Rage, Riots

JUST HOURS before the now world-famous Rodney King verdict ignited this country's worst riots of this century, a meeting was held in Los Angeles, Calif, to address another perceived injustice. days of violence that followed are reflecting a harsh light on what otherwise would have been obscure beginnings for the Los Angeles County Board of Supervisors' Task Force on Health Care Access, an earnest group with representation from virtually every pertinent interest group except underserved people and the minority physicians most likely to care for them. Access to health care, which is abysmal nationwide, is perhaps poorest in Los Angeles County. Fully 27% of the population is completely uninsured, and fewer and fewer physicians are taking patients covered by Medical, the state's program for the poor, because they say its meager payments do not meet even their overhead costs. The safety net is torn to pieces. There is widespread