In order to ensure the generalizability of clinical research studies, researchers and study sponsors are tasked with making efforts to ensure that research participants are racially and ethnically representative of the population at large. However, minorities and women continue to be underrepresented in medical research studies. To encourage participation in medical research studies, researchers are often inclined to offer compensation for study participation. However, it is vital that researchers consider the ethical implications of monetizing participation in medical research studies. The first aim of this paper is to discuss the ethical ramifications of providing compensation for research participation. Additionally, this paper will critically analyze the various ways of handling financial compensation for participation in medical research studies involving experimental drugs, devices or surgical techniques. Information for this paper was gathered by conducting a literature review and by analyzing 121 semi-structured interviews. Using an ethical framework, and supported by qualitative data from the interviews, this paper will discuss the ethical concerns that researchers must consider when offering monetary compensation in exchange for participation in medical research. Overall, the paper aims to show that in order for clinical research to be conducted ethically, we must grant potential participants the autonomy to use their own decision making framework when deciding whether or not to participate in a medical research study. While a potential participant’s decision to join a research study in exchange for financial compensation may raise concerns to some people, autonomy requires that the research institution respect each individual’s own motivations and decisions. / Urban Bioethics

As an oncology clinical researcher at an urban hospital, I reflected on patient stories and see overlying themes: financial hurdles, treatment delays, difficulties completing treatment, ineligibility for clinical trials, and other barriers to care specific to urban patients. Delays in cancer treatment have been linked to a decrease in overall survival; consequently, reducing observed blockades could be a matter of life and death. Clinical trials provide more treatment options while researching possible standard of care therapies for future patients. As novel anticancer treatments become more biomolecule specific and low minority enrollment on clinical trials used to validate these drugs continues, I ask, “Why”? I believe urban patients are unethically excluded from participating in clinical trials by overly restrictive study eligibility criteria, high out-of-pocket costs, lengthy informed consents written either not at the patient’s reading level or not in their language, as well as other deterrents associated with low socioeconomic status. More minority representation in clinic trials is necessary to ensure drugs seeking FDA approval are more representative of the population. I argue more needs to be done to make studies more inclusive. Though challenges enrolling urban patients onto clinical trials remains, I believe there are still ways to enhance their cancer care: 1) identifying or writing treatment clinical trials that are more inclusive; and 2) developing studies with interventions that target socioeconomic barriers to care. / Urban Bioethics

Schizophrenia is a disease which presents many challenges. Medically, legally, and socially, afflicted individuals face obstacles that decrease their overall quality of life. Some of these are sequela of the disease and its decrease in social functioning, or symptoms of paranoia and disorganization. However, others are placed on these individuals by society. This has created a lifestyle which is marred by comorbid medical conditions and a resistance to receive treatment. It also creates frequent contact with the legal system, leading to a disorganized home life, and a significant amount of time spent behind bars, and being victimized by others. Finally, many schizophrenic patients are unable to find jobs, and report being without significant supportive relationships in their lives, creating stress both on themselves and their families and caregivers. These difficulties in life can be inseparable from their disease and place schizophrenic patients at a further disadvantage. / Urban Bioethics

The pediatric emergency department (PED) provides a unique environment to consider ethical issues faced in modern healthcare. Using a combination of personal reflections and a review of current literature, ethics within the PED is explored as it pertains to four categories: informed consent, health literacy, language barrier, and implicit bias. Parental consent is generally required for pediatric care, but there are exceptions encountered in the PED. Although children typically cannot provide consent, soliciting assent respects their autonomy and maturing cognitive development. Limited health literacy is a prominent issue in the U. S., yet healthcare information continues to be delivered in ways that do not adequately account for this. Change will necessitate creative solutions and reorientation to a focus on health equity and justice. Physician implicit bias may be related to a patient’s negative behaviors or inherent characteristics (e.g. race), and can result in adverse health outcomes for affected children. Physicians should confront their subconscious biases through introspection, open discussion, and implicit-bias training. Access to healthcare information in one’s native language is a basic human right protected by law. Use of qualified medical interpreters can alleviate disparities faced by patients with limited English proficiency, but may be underutilized in the PED. / Urban Bioethics

The current opioid epidemic has had grave financial and mortal costs for our nation, and the numbers continue to climb despite our best efforts. In spite of attempts to limit the prescription of opioids and implementation of harm reduction strategies, it is clear that we are not doing enough for people struggling with drug addiction. There are many voices present in the war on drugs, however one that is noticeably absent from the conversation is that of people who inject drugs. It is clearly time to try something new which requires a fresh approach and a new point of view. Confronting the current crisis using a public health approach addresses the associated moral challenges faced in the past and provides a new lens to view potential challenges and solutions. With this new approach arises the need for a public health ethical framework to make ethically informed, community engaging, evidence based decisions on a societal, public health, and everyday level. In addition to this new public health ethics framework, the engagement of the community of people who inject drugs is no longer negotiable in order to develop more effective harm reduction interventions and policies. / Urban Bioethics

People with dementia account for a growing number of patients requiring end-of-life medical care each year in the United States. The clinical application of bioethical principles is rarely more important than in the context of end-of-life decision making, and determining the appropriate clinical treatment plan can be difficult and complex for clinicians, patients, and medical proxies. While the current bioethical literature offers a wealth of information on the principles underlying ethical medical practice, real-world clinical scenarios are often fraught with confusion, complexity, and conflicting understandings of best practices. There is a need for clinical decision-making tools that are both comprehensive yet simple, and broadly-applicable enough to be clinically useful. This thesis explores the cultural factors that necessitate further discussion and understanding of the issues surrounding end-of-life care for people with dementia, uses a clinical case to demonstrate a real-world approach to the ethical complexities surrounding such care, and proposes a basic ethical decision-making algorithm with the potential for broad application by students and clinicians encountering complex ethical scenarios. / Urban Bioethics

In hospitals situated in the center of underserved communities, such as North Philadelphia, health care workers are often faced with challenges to patient health that stem from their socioeconomic status. This is an obvious problem in stroke prevention, which requires patients to eat healthy, maintain adherence to medications, and exercise, among other things. As social determinants of health limit a patient’s ability to act on these recommendations, health care workers are forced to grapple with the question of how to best care for a patient with limited resources. Though some may label this patient as difficult due to what may be viewed superficially as non-adherence to medications and lack of motivation to change their lifestyle’, a more compassionate and accurate observation is one that acknowledges the fact that these patients are unable to act on any recommendations given to them due to limitations on their autonomy by several social barriers, such as lack of access to follow-up, transportation, income, food, etc. As physicians have a duty to respect a patient’s autonomy, what this also requires is ensuring a patient understands how best to navigate within their limited autonomy, i.e. how to exercise their agency. Instead of waiting for policymakers to incite change, at the micro level, health care workers can take additional measures by providing resources within their limitations that will then improve a patient’s agency and, as a result, improve their health. / Urban Bioethics

The proliferation of social media and other online forums has allowed female patients to share their experiences in the healthcare system. Female patients and women’s health advocates can more easily speak out about instances of gender bias in medicine, which impact women’s access to equitable healthcare and positive healthcare experiences. Although there are some medical studies addressing gender disparities in various aspects of medicine, the impacts of gender bias on healthcare remain understudied and poorly understood. Patient narratives therefore provide an essential insight into the state of gender bias in medicine today. This paper aims to explore these narratives for common themes, to determine whether the current medical literature supports the presence of gender-based disparities, and to highlight the biological, psychological, and sociocultural factors impacting any disparities. Patient narratives frequently cite frustrations with diagnostic errors or delays and inadequate pain management, and the medical literature generally supports women’s accounts of gender disparities in these areas. Several studies of diagnostic disparities show that women more frequently experience delays in diagnosis, missed diagnoses, and incorrect psychiatric diagnoses. Multiple pain management studies have found that women face longer delays in care, lower rates of analgesic administration (particularly opiates), and fewer referrals for nonpharmacologic management strategies. Explanations for these disparities are likely multifactorial, and include provider ignorance of female-specific presentations and diseases, prevalence of understudied diseases in women, misattribution of symptoms to psychogenic causes, communication differences, normalization of female pain, and misconceptions about pain tolerance. / Urban Bioethics

A main challenge in medicine concerns questions of how to integrate the context and values of patient perspectives with general conceptions of illness and treatment. With medicine increasingly focused on patient-centered and individualized care, approaches to medicine must find ways to gain access to and understand the patient in such a way that recognizes her story as real while at the same time maintaining the value of medicine as an objective practice. Adding to this is the reality that under current models of medicine and decision-making in medicine, healthcare disparities persist for persons belonging to marginalized and vulnerable populations, including racial and ethnic minorities, women, and LGBTQ persons, amongst others. I argue that an approach integrative of shared decision-making built upon a phenomenological framework is a good alternative on which to try and understand questions like these and begin to address disparities in healthcare. / Urban Bioethics

Clinical decision making is influenced by available literature, technology, and guidelines, but also by cultural expectations, physician experience, and personal biases. The treatment of various forms of disability is especially vulnerable to these prejudices. Alzheimer Dementia (AD) and Spinal Muscular Atrophy (SMA) represent forms of cognitive and physical disability, respectively. In severe forms of both diseases, patients are often unable to communicate and do not meet traditional definitions of autonomy. However, physicians and consensus guidelines adhere to these very same definitions of autonomy, which subsequently disadvantages patients that cannot verbalize. This bias is reflected in available guidelines for catheter-directed thrombectomy for acute ischemic strokes, which passively discourage physicians from treating patients with baseline AD. Inversely, pediatric definitions of autonomy may expose patients to over-treatment with nusinersen, a medication recently approved for the treatment of SMA. Adapting theories of bodily autonomy will allow physicians to approach the treatment of those who cannot verbalize in a more ethical fashion. / Urban Bioethics