Bioethics and Medical Ethics Commons^™

Community Engagement In Precision Medicine Research: Organizational Practices And Their Impacts For Equity, Janet K Shim, Nicole Foti, Emily Vasquez, Stephanie M Fullerton, Michael Bentz, Melanie Jeske, Sandra Soo-Jin Lee

Center for Medical Ethics and Health Policy Staff Publications

Background: In the wake of mandates for biomedical research to increase participation by members of historically underrepresented populations, community engagement (CE) has emerged as a key intervention to help achieve this goal.

Methods: Using interviews, observations, and document analysis, we examine how stakeholders in precision medicine research understand and seek to put into practice ideas about who to engage, how engagement should be conducted, and what engagement is for.

Results: We find that ad hoc, opportunistic, and instrumental approaches to CE exacted significant consequences for the time and resources devoted to engagement and the ultimate impacts it has on research. …

Should Health Systems Share Genetic Findings With At-Risk Relatives When The Proband Is Deceased? Interviews With Individuals Diagnosed With Lynch Syndrome, Jessica Ezzell Hunter, Jennifer L. Schneider, Alison J. Firemark, James V. Davis, Sara Gille, Pamala A. Pawloski, Su-Ying Liang, Victoria Schlieder, Alanna Kulchak Rahm

Journal of Patient-Centered Research and Reviews

Purpose: Genetic information has health implications for patients and their biological relatives. Death of a patient before sharing a genetic diagnosis with at-risk relatives is a missed opportunity to provide important information that could guide interventions to minimize cancer-related morbidity and mortality in relatives.

Methods: We performed semi-structured interviews with individuals diagnosed with Lynch syndrome at 1 of 4 health systems to explore their perspectives on whether health systems should share genetic risk information with relatives following a patient’s death. An inductive, open-coding approach was used to analyze audio-recorded content, with software-generated code reports undergoing iterative comparative analysis by a …

Fair Allocation Of Scarce Therapies For Coronavirus Disease 2019 (Covid-19), Govind C. Persad, Monica E. Peek, Seema K. Shah

Sturm College of Law: Faculty Scholarship

The US Food and Drug Administration (FDA) has issued emergency use authorizations (EUAs) for monoclonal antibodies (mAbs) for nonhospitalized patients with mild or moderate coronavirus disease 2019 (COVID-19) disease and for individuals exposed to COVID-19 as postexposure prophylaxis. EUAs for oral antiviral drugs have also been issued. Due to increased demand because of the Delta variant, the federal government resumed control over the supply and asked states to ration doses. As future variants (e.g., the Omicron variant) emerge, further rationing may be required. We identify relevant ethical principles (i.e., benefiting people and preventing harm, equal concern, and mitigating health inequities) …

A Bioethics Critique Of The Healthcare System In Nigeria: Personal Dignity And Human Solidarity, Cyprian Duru

Electronic Theses and Dissertations

Life is a sacred gift, an indivisible good with an inherent dignity and value. Despite its uniqueness, fragility, vulnerability, and limitations, it remains the most interesting, attractive, and exciting thing one can possess. These attributes invoke a deep sense of respect to life. Recently, science and biotechnology have astonished the world, as they continue to disorient human consciousness on new set of ethical issues. In effect, life is seriously exposed to the perspectives of modern science and technology. Thus, President George W. Bush warns that the powers of science are morally neutral, capable for good and bad purposes. In …

Narrative Capacity, James Toomey

Elisabeth Haub School of Law Faculty Publications

The doctrine of capacity is a fundamental threshold to the protections of private law. The law only recognizes private decision-making—from exercising the right to transfer or bequeath property and entering into a contract to getting married or divorced—made with the level of cognitive functioning that the capacity doctrine demands. When the doctrine goes wrong, it denies individuals, particularly older adults, access to basic private-law rights on the one hand and ratifies decision-making that may tear apart families and tarnish legacies on the other.

The capacity doctrine in private law is built on a fundamental philosophical mismatch. It is grounded in …

Public Goods From Private Data: An Effectiveness And Justification Dilemma For Digital Contact Tracing, Andrew Buzzell

The Journal of Sociotechnical Critique

Debate about the adoption of digital contact tracing (DCT) apps to control the spread of COVID-19 has focussed on risks to individual privacy. This emphasis reveals significant challenges to ethical deployment of DCT, but generates constraints which undermine justification to implement DCT. It would be a mistake to view this result solely as the successful operation of ethical foresight analysis, preventing deployment of potentially harmful technology. Privacy-centric analysis treats data as private property, frames the relationship between individuals and governments as adversarial, entrenches technology platforms as gatekeepers, and supports a conception of emergency public health authority as limited by individual …

Errors In Converting Principles To Protocols: Where The Bioethics Of Us Covid‐19 Vaccine Allocation Went Wrong, William F. Parker, Govind C. Persad, Monica E. Peek

Sturm College of Law: Faculty Scholarship

For much of 2021, allocating the scarce supply of Covid-19 vaccines was the world's most pressing bioethical challenge, and similar challenges may recur for novel therapies and future vaccines. In the United States, the Centers for Disease Control and Prevention's Advisory Committee on Immunization Practices (ACIP) identified three fundamental ethical principles to guide the process: maximize benefits, promote justice, and mitigate health inequities. We argue that critical components of the recommended protocol were internally inconsistent with these principles. Specifically, the ACIP violated its principles by recommending overly broad health care worker priority in phase 1a, using being at least seventy-five …

Potential And Limitations Of Using Stem Cells To Cure Alzheimer’S Disease: A Literature Review Of Its Potential And Ethical Limitations In Translation To Human Trials, Eleni Zivla

OUR Journal: ODU Undergraduate Research Journal

Alzheimer's disease has become one of the most significant, life-limiting illnesses of our time as a result of the rapid increase in the average life expectancy. To successfully develop a cure for this yet incurable disease, one must understand the pathology of Alzheimer’s disease. As found in recent research studies, a brain that is diagnosed with Alzheimer's is characterized by the presence of extracellular amyloid plaques composed of the amyloid-beta (Aβ) peptide and intracellular neurofibrillary tangles composed of the microtubule-associated protein: tau. In this literature review, several stem cell therapies are being reviewed as a potential cure for Alzheimer’s disease …

Righting Health Policy: Bioethics, Political Philosophy, And The Normative Justification Of Health Law And Policy, D. Robert Macdougall

Publications and Research

In Righting Health Policy, D. Robert MacDougall argues that bioethics needs but does not have adequate tools for justifying law and policy. Bioethics’ tools are mostly theories about what we owe each other. But justifying laws and policies requires more; at a minimum, it requires tools for explaining the legitimacy of actions intended to control or influence others. It consequently requires political, rather than moral, philosophy. After showing how bioethicists have consistently failed to use tools suitable for achieving their political aims, MacDougall develops an interpretation of Kant’s political philosophy. On this account the legitimacy of health laws does …

How To Compromise On Saving The Most Lives: A Commentary On Hellman And Nicholson, “Rationing And Disability”, David Wasserman

Washington and Lee Law Review Online

Deborah Hellman and Kate Nicholson’s “Rationing Disability” is a skillfully integrated analysis of the legal and ethical challenges of avoiding disability discrimination in setting priorities for the allocation of scarce lifesaving resources. Their analysis goes beyond the important but narrow question of what it means to wrongfully discriminate against people with disabilities in this context to the broader question of how to find a principled compromise between the consequentialist goals of public health and the potentially conflicting public value of “equal concern and respect” for each person. I will focus on this broader issue.

I agree with much …

A Public Health Ethics Approach To Substance Use Disorder, Adele Flaherty

Electronic Theses and Dissertations

The goal of the dissertation is to undertake an analysis of substance use disorders that focuses on a public health ethics perspective. The ethical argument focuses upon justifying the use of harm reduction and is primarily concerned with the current opioid crisis. While substance abuse/misuse over the course of history has been identified as a public health concern, this dissertation presents substance use disorders over the course of the lifespan, examining various contexts in which it can affect daily living and health outcomes. It achieves this by analyzing substance use disorders through the lens of the socioecological model of public …

How Analogizing Socio-Legal Responses To Organ Transplantation Can Further The Legalization Of Reproductive Genetic Innovation, Myrisha S. Lewis

Faculty Publications

The Nobel Foundation emphasized the significance of genetic innovation to society, science, and medicine by awarding the 2020 Nobel Prize in Chemistry to “the CRISPR/Cas9 genetic scissors.” This Article focuses on “reproductive genetic innovation,” a term that includes cytoplasmic transfer, mitochondrial transfer, and germline or heritable gene editing techniques that are all categorized as “experimental” in the United States. These techniques all use in vitro fertilization, a legal and widely available practice. Yet reproductive genetic innovation has resulted in controversy and numerous barriers including a recurring federal budget rider, threats of federal enforcement action, and the unavailability of federal funding. …

Future Space Missions And Human Enhancement: Medical And Ethical Challenges, Konrad Szocik, Mark Shelhamer, Martin Braddock, Francis A. Cucinotta, Chris Impey, Pete Worden, Ted Peters, Milan M. Ćirković, Kelly C. Smith, Koji Tachibana, Michael J. Reiss, Ziba Norman, Arvin M. Gouw, Gonzalo Munévar

Health Physics and Diagnostic Sciences Faculty Research

Future human space missions to Mars and beyond may be realized for different research, economic, political or survival reasons. Since space remains a hazardous environment for humans, space exploration and exploitation requires the development and deployment of effective countermeasures. In this paper, we discuss prospects for human enhancement by gene editing, synthetic biology, or implants, for the purposes of future space missions. We argue that there are good reasons to consider such options, and that ethical arguments can be made in favor of human enhancement to enable long-term space exploration.

Clash Of Titans: An Ethical Framework Towards Limitations In Religious Accommodation Within Healthcare, Yoelit Lipinsky

Electronic Theses and Dissertations

In late October 2017, a young Canadian Jewish man was at the center of a storm that involved ethics, religion, law and policy He had been unconscious for a month and doctors deemed him brain dead. The Jewish community, and his family, wished to keep him on life support, since their religion did not consider brain death to be ‘death.’ This clash between medical and religious perspectives poignantly illustrates the unique and growing challenges posed by religious observance in Canada’s secular healthcare system. A similar story is found in America. In December 2019, a story was published demonstrating fears that …

"As Long As I'M Me": From Personhood To Personal Identity In Dementia And Decision-Making, James Toomey

Elisabeth Haub School of Law Faculty Publications

As people, especially older people, begin to develop dementia, we confront ethical questions about when and how to intervene in their increasingly compromised decision-making. The prevailing approach in philosophically-inclined bioethics to tackling this challenge has been to develop theories of “decision-making capacity” based on the same characteristics that entitle the decisions of moral persons to respect in general. This Article argues that this way of thinking about the problem has missed the point. Because the disposition of property is an identity-dependent right, what matters in dementia and decision-making is an individual’s personal identity with their prior self, not their moral …

Is Germline Gene Editing Exceptional?, Myrisha S. Lewis

Faculty Publications

Advances in gene editing have recently received significant scientific and media attention. Gene editing, especially CRISPR-Cas9, has revived multiple longstanding ethical debates, including debates related to parental autonomy, health disparities, disability perspectives, and racial and economic inequalities. Germline, or heritable, gene editing generates several newer, neglected bioethical debates, including those about the shared human germline and whether there is a "line" that humans should not cross.

This Article addresses several interrelated ethical and legal questions related to germline gene editing. Those questions address why, if at all, germline gene editing needs to be regulated and, if germline gene editing needs …

Examining The Intersectionality Of Religious Faith, Spirituality, And Healthcare Communication, Felix Okeke

Electronic Theses and Dissertations

This dissertation is my own contribution in responding to the concern raised by certain communication scholars. Their concern was that little research and few publications have been done in the communication field by communication scholars that trace the relationship among religious faith, spirituality, and healthcare communication. While Parrott (2004) describes this apparent neglect as “collective amnesia,” others label it “religion blindness.” Thus, in trying to trace this relationship, this project uses Christian, biblical, and bioethics backgrounds to establish the value, sacredness, and dignity of human life, since these concepts make healthcare and healthcare communication necessary in the first place. These …

A Bioethical Paradigm For Enhanced, Post Or Transhumans In Medicine And Biological Research, Roderick Williams

Electronic Theses and Dissertations

In this dissertation the question addressed is the ethical protocol that should be used when enhanced, post or transhumans present themselves as patients to hospitals, or as subjects for scientific research. With the advent of the birth of four children who were genetically engineered in China to be resistant to HIV, I contend that transhumans are already here, and the prevailing Western paradigm of principlism, while good, is not adequate to the task. I explore the basic religious argument that can be used against or in favor of what I call human-directed human evolution. I show how the fears of …

The Bioethical Implications Of Genetic Screening Programs For Rare Diseases, Ellie Pitcher, Jeremy Mccallum

Honors Thesis

In the United States, there are currently thirty-five hereditary medical disorders that the Department of Health and Human Services recommends for newborn screening. The early diagnosis of these disorders is critical to the health and well-being of affected individuals. There are many more rare genetic diseases that would benefit from early diagnosis, but which do not symptomatically present until late in life or have low penetrance. Some of these genetic diseases are extremely dangerous, and would massively benefit from the early diagnosis that accompanies newborn screening in the United States. Here the benefits and risks associated with early screening for …

Inconceivable: An Analysis Of Assisted Reproductive Technology For The Church, Mary Elizabeth Gresham

Senior Honors Theses

Infertility pushes the boundaries of emotional and physical health, which is why many couples inside and outside the church turn to Assisted Reproductive Technology (ART) for a solution. Despite what has seemed like silence from the Church, some individuals have braved the biological confusion and ethical dilemmas to evaluate the technology. Three major ethical viewpoints have emerged that each prioritize something over medical technology, namely community, order, or human dignity. This paper serves to educate pastors and church leaders on the ever-changing biology of ART as well as give voice to Christians that have spoken out on this issue. At …

Tuskegee Syphilis Study Not America's Only Medical Scandal: Chester M. Southam, Md, Henrietta Lacks, And The Sloan-Kettering Research Scandal, Leonard F. Vernon

Journal of Health Ethics

The words “human medical experimentation” conjure up visions of Nazi medicine, which has come to exemplify the worst evils in the history of humankind. Places like Auschwitz and Dachau, where human life was cheap and test subjects plentiful were used as laboratories.

In 2010 the US government apologized to Guatemala for allowing U.S. doctors to infect Guatemalan prisoners and mental patients with syphilis 65 years earlier, while acknowledging dozens of similar experiments in the United States. These included studies that often involved making healthy people sick. such as in the Tuskegee syphilis study.

These experiments were often life threatening and …

Constitutionalizing Nature's Law: Dignity And The Regulation Of Biotechnology In Switzerland, James Toomey

Elisabeth Haub School of Law Faculty Publications

The Swiss Constitution was amended by referendum in 1992 to include two unique provisions: Article 119, which imposes strict limits on genetic and reproductive technologies in humans in order to protect ‘human dignity’, and Article 120, which commits the Swiss federal government to limiting genetic technologies in non-human species on the basis of the ‘dignity of the creature’. This article analyzes the role of ‘dignity’ as a limit on biotechnologies in the Swiss constitutional order. It concludes that the understanding of dignity the constitution embraces codifies a contestable metaphysical theory of value at the constitutional level. Specifically, the Swiss constitutional …

Immunotherapy: Therapy Vs. Enhancement, Mariah Daly

Honors Program Theses

The battle against cancer is a long-standing struggle that has resulted in new information and the development of novel medical technologies. Current research aims to figure out a way to reprogram cells and bodily mechanisms to eliminate those cells that are cancerous without destroying healthy cells in the process. Methods which use the body’s own mechanisms, such as immunotherapy, have shown and continue to show potential for specifically targeting cancer cells. Adoptive T cell therapy is one form of immunotherapy that has gained significant attention and focus in the field. Therapies improve conditions up to the normal state of being, …

Presumed Consent And Priority Allocation Systems For Organ Donation Legislation In The United States: Making The Moral Case, Ann K. Shapiro, Peter A. Depergola Ii

Philosophy, Theology and Religious Studies Faculty Publications

In recent decades, developed nations, such as the United States, have seen the gap between the demand and the supply of transplantable organs widen, despite national campaigns intended to promote donor registration. This organ shortage crisis has deprived thousands of a basic quality of life and has caused a substantial increase in the cost of alternative medical care such as dialysis. In an attempt to address the shortage, some countries have instituted explicit “opt-out” and “priority allocation” policies that operate under the principle of presumed consent and offer higher priority on transplantation lists to registered donors. This paper seeks to …

Balancing Conscience: A Response To Fernandes & Ecret, Ian D. Wolfe, Maryam Guiahi

Manuscripts, Articles, Book Chapters and Other Papers

There are many lessons that bioethics can learn from the Holocaust. Forefront are the lessons from the Nuremberg trials and the formation of research ethics. An often-overlooked lesson is how the Nazi regime was able to construct a hierarchy in such a way that influenced people to act in horrendous ways. Fernandes & Ecret, writing in Conatus – Journal of Philosophy 4, no. 2 (2019), highlight the influence of hierarchy on the moral silence of nurses and physicians within the Nazi regime. While we greatly enjoyed the paper, and think it is an important contribution, we find several misrepresentations of …

Checklist-Ethical Analysis And Decision-Science, Melinda Wilding

Bioethics Program of Study

No abstract provided.

Autonomy, Suffering, And The Practice Of Medicine: A Relational Approach, Michael A. Stanfield

USF Tampa Graduate Theses and Dissertations

In this project, I argue that the conventional view of personal autonomy that is operational in contemporary American culture, bioethics and medical practice places undue emphasis on individualism and a limited range of personal qualities and attributes (such as self-sufficiency). Instead, I argue in favor of a relational approach to autonomy which recognizes that each person that exists has certain minimal connections or relations to others, and these connections/relations are identity-forming. Unfortunately, current medical practices have tended to overemphasize individuality and choice (consistent with the conventional view) while minimizing or excluding these relational aspects. As a result, informed consent and …

Public Health Policy: An Ethical Analysis Of Quarantine, Dina Alqahtani

Electronic Theses and Dissertations

As a public health measure quarantine has both historical and contemporary significance both in the United States and abroad. On the surface it represents a low-cost, low-tech way in which the spread of disease can be mitigated as its core requirement is that those who may have been exposed to an infectious agent are kept away from those who have not been exposed to that agent for enough time to determine whether or not infection has been spread. This has been utilized for centuries with both limited questions and scattered, inconsistent, or impossible to achieve oversight and goals. In understanding …

Law & Health Care Newsletter, Spring 2019

Law & Health Care Newsletter

No abstract provided.

Designing Ethakul: A Mobile Just-In-Time Learning Environment For Bioethics In Pakistan, Azra Naseem, Kulsoom Ghias, Sohail Bawani, Mohammad Ali Shahab, Sameer Nizamuddin, Waqar Kashif, Kausar S. Khan, Tashfeen Ahmad, Murad Khan

Institute for Educational Development, Karachi

In developing countries such as Pakistan, bioethics has not been included in mainstream thinking in medical education. The authors’ experiences suggest that current methods of teaching bioethics are problematic as students are unable to translate theory to practice. Alternative pedagogies, such as just-in-time learning (JiTL) using mobile devices, may be able to foster the development and implementation of ethical reasoning among nurses, doctors, and medical and nursing students. This research was conceived to determine the effectiveness of mobile JiTL – anytime, anyplace learning through mobile devices – for teaching bioethics. After obtaining ethical clearance, a participatory design (PD) approach was …