Bioethics and Medical Ethics Commons^™

Attitudes Toward Personal Health Data Sharing Among People Living With Sickle Cell Disorder, Exemplar For Study Of Rare Disease Populations, Rebecca Baines, Sebastian Stevens, Zainab Garba-Sani, Arunangsu Chatterjee, Daniela Austin, Simon Leigh

Journal of Patient-Centered Research and Reviews

Purpose: Rare conditions are often poorly understood, creating barriers in determining the value treatments can provide. This study explored barriers and facilitators to personal health data sharing among those with one particular group of rare hematologic disorders, ie, sickle cell disorder (SCD) and its variants.

Methods: A single online focus group among those > 18 years of age and living with SCD was conducted. Participants (N = 25) were recruited through a United Kingdom-based SCD charity. Discussions were transcribed verbatim, with data therein analyzed using inductive thematic analysis.

Results: Five primary motivators for sharing health data were identified: improving awareness; knowing …

Patients And Families As Partners In Patient-Oriented Research: How Should They Be Compensated?, Monika Novak-Pavlic, Jan Willem Gorter, Michelle P. Phoenix, Samantha K. Micsinszki, Kinga Pozniak, Lin Li, Linda Nguyen, Alice K. Soper, Elaine Yuen Ling Kwok, Jael N. Bootsma, Francine Buchanan, Hanae Davis, Sandra Abdel Malek, Karen M. Van Meeteren, Peter L. Rosenbaum

Journal of Patient-Centered Research and Reviews

Patient and family engagement has become a widely accepted approach in health care research. We recognize that research conducted in partnership with people with relevant lived experience can substantially improve the quality of that research and lead to meaningful outcomes. Despite the benefits of patient-researcher collaboration, research teams sometimes face challenges in answering the questions of how patient and family research partners should be compensated, due to the limited guidance and lack of infrastructure for acknowledging partner contributions. In this paper, we present some of the resources that might help teams to navigate conversations about compensation with their patient and …

Peer-Supervision Of Nursing Professionals: A Shield Against Burnout, Kyle Gamache, Sarah Gamache, Joseph Robillard

Journal of Wellness

Introduction: Burnout is a major risk in healthcare professions and is a significant contributor to the current nursing shortage. Strategies to combat burnout of healthcare professionals are in desperate need. The purpose of this project is to introduce the clinical peer supervision model as a method to alleviate burnout in nursing professionals.

Approach: Eight nurses from in-patient settings participated in a peer-supervision support group, modeled after existing European nursing and mental health provider-support protocols. To assess the effect of this intervention, qualitative data analysis was conducted on the transcripts of session and the results described. All participants reported statistically high …

Delivery Of The Immune System: Understanding The Development Of The Human Immune System Based On Birth Mode, Sara Abbas

Faculty Curated Undergraduate Works

The creation of the immune system starts from the womb. The expecting mother plays an immense role outside of the genetic influence in developing a neonate’s immune system. The mode of birth has a substantial impact, as the neonate’s initial moments can have lasting impacts on the making of a proper immune system. A mother should have the choice in choosing between a vaginal birth or a cesarean section and this paper looks to provide aid in the decision process by contrasting the two modes in terms of immunological impact, especially as the rate of c-sections climb (1,2). The approach …

The Revolutionary Genome Editor: Crispr-Cas9 Systems, Grace Spade

Senior Honors Theses

Genetic engineering is the modification of an organism's genetic material to alter its traits through adding, deleting, or changing specific genes. CRISPR-Cas9 systems are groundbreaking tools for genetic engineering, in short utilizing a molecule called RNA to guide a protein called Cas9 to a specific location in DNA to add, delete, or replace genes. The history of how the CRISPR-Cas9 systems came into existence, how it was adapted from a natural defense system in bacteria, and its mechanism of action in both are explained. Its applications, both present and future, competing genetic modifiers, advantages and disadvantages, and the ethical dilemmas …

Jurisgenerative Tissues: Sociotechnical Imaginaries And The Legal Secretions Of 3d Bioprinting, Roxanne Mykitiuk, Joshua Shaw

Articles & Book Chapters

Three-dimensional ‘bioprinting’ is under development, which may produce living human organs and tissues to be surgically implanted in patients. Like tissue engineering and regenerative medicine generally, the process of bioprinting potentially disrupts experience of the human body by redefining understandings of, and becoming actualised in new practices and regimes in relation to, the body. The authors consider how these novel sociotechnical imaginaries may emerge, having regard to law’s contribution to, as well as its possible transformation by, the process of 3D bioprinting. The authors draw on Gilbert Simondon and corporeal, material feminists to account for these disruptions as ‘ontogenetic,’ in …

Moral Injury To Inform Analysis Of Post-Traumatic Stress Disorder, Amanda Julia Manea

Senior Theses

Post-traumatic stress disorder (PTSD) is a mental health condition that almost one out of ten veterans struggle with. Although the National Center for PTSD has made extensive progress in characterizing and developing new treatments for PTSD, most veterans still experience symptoms of PTSD following treatment. Novel avenues of investigation, such as developing algorithms to review electronic health record (EHR) data and better understanding moral injury, are being pursued to address the gap that still exists when it comes to treating veterans. Moral injury is the individual evaluation of exposure to a potentially morally injurious event (PMIE) and can lead to …

Where Do We Draw The Line? The Ethical Dilemma Involved In Genetic Engineering And Gene Therapy, Amber Schrag

Senior Honors Theses

Genetic engineering and gene therapy are greatly disputed in our time. With the advancement of technology, one has the power to manipulate genes in the body, which raises the questions: What is our role in this? Is there a limit to this power, or should there be? This paper reviews the uses of this technology and evaluates the ethics from a scientific and Biblical point of view. It is concluded that using gene therapy to help cure diseases is very beneficial in both the scientific and Biblical realm as it is restoring individuals back to health and wholeness.

The Ethical Challenges Of Newborn Screening Programs In The United States, Devin Donovan

Senior Theses

Newborn screening programs have been mandated throughout the United States since the 1960s, and technological advancements have allowed for their evolution into the essential public health entities they are today (Arnold 558). These programs screen newborns for a variety of congenital and genetic conditions in all states, but each state varies in conditions screened and policies for collecting and using samples. Residual blood spots are a key component of these programs because they are often used for secondary purposes, such as for quality assurance and public health or biomedical research (Botkin et al. 121). Ethical challenges have arisen related to …

Course Sharing: An Interprofessional Education (Ipe) Perspective, Anita Hazelwood, Jennifer B. Lemoine

Academic Chairpersons Conference Proceedings

This presentation will walk participants through the steps in developing interprofessional courses; identifying course offerings, exploring units interested in course sharing, soliciting administrative support, and balancing workloads for faculty. A case study describing the introduction of a legal and ethics course will be presented and results discussed.

Advancing Health Equity In The Us Military, James D. Mancuso, John Young, Jennifer Rusiecki, Shauna Stahlman, Natasha Schvey, Toya Randolph, Candy Wilson, Catherine Witkop, Patrick Hyde, Althea Green, Patcho Santiago, Donald Shell, Tracy Sbrocco

Journal of Health Disparities Research and Practice

Eliminating health disparities and achieving health equity are central to US national health objectives and the Military Health System’s “quadruple aim,” which has readiness as its core aim. Because military service members enjoy universal eligibility for health care, it is sometimes assumed that health disparities do not exist in the Department of Defense (DoD). However, while some studies have shown that disparities have been attenuated or eliminated in the DoD, others suggest that significant disparities remain. Reasons these disparities may remain include that universal eligibility for care does not necessarily result in equal to access to care, and that equal …

The Legal Limits Of Parental Autonomy: Do Parents Have The Right To Refuse Intramuscular Vitamin K For Their Newborn?, Shannon M. Isennock

HCA Healthcare Journal of Medicine

The American Academy of Pediatrics recommends that all newborns receive an intramuscular (IM) dose of vitamin K within 6 hours of delivery for the prevention of vitamin K deficiency bleeding (VKDB). There has been an increase in the number of parents who have refused the IM vitamin K dose for their infant based on its possible link to leukemia, preservatives that may lead to adverse reactions, and wanting to avoid pain for the infant. When newborns do not receive IM vitamin K, the most serious feared potential complication is intracranial hemorrhage with potential neurologic sequela including seizures, developmental delay, and …

Characteristics Analysis And Inspiration Of The Us Brain Initiative, Mian Zu, Ying Wang, Wei Liu, Zexi Xin, Lei Wang

Bulletin of Chinese Academy of Sciences (Chinese Version)

Major countries have launched brain initiatives for competition, aiming to gain strategic priority in the area of brain ultimate frontier for human being in the course of recognizing nature. The US BRAIN Initiative is a scientific project comparable to the Human Genome Project in scale and potential impact. Accelerating the development and application of new technologies and tools is the driving force for the US BRAIN Initiative, which takes the lead in race owing to its realistic and innovative development mode. This study briefly reviews the implementation progress, the strategic reports and research achievements of the US BRAIN Initiative, and …

Genetic Enhancement Of The Inevitable, Varun Kota

Mako: NSU Undergraduate Student Journal

The invention of CRISPR-CAS9 allows one to edit the genome easily. As a result, many are excited by the potential breakthroughs in medical applications. Others worry that the development of this technology will lead to genetic enhancement, the modification of a set of genes toward a non-therapeutic end goal. After reviewing the philosophical and ethical literature regarding genetic enhancement it became apparent that there was a lack of specificity. Often, the arguments portrayed genetic enhancement as an unbelievable process. In reality, the effects of genetic enhancement are far tamer. The folly in these discussions lies in the notion that traits …

Indiana Law Fertility Fraud Expert Participates In Washington, Dc Roundtable, James Owsley Boyd

Keep Up With the Latest News from the Law School (blog)

Professor Jody Madeira, an internationally recognized expert in fertility fraud, bioethics, and law and medicine, participated this morning (January 26) in a bipartisan roundtable discussion with victims of fertility fraud. The event was facilitated by U.S. Representatives Stephanie Bice (R-OK), Mikie Sherrill (D-NJ), Julia Letlow (R-LA), and Chrissy Houlahan (D-PA) following the January 23 introduction of their Protecting Families From Fertility Fraud Act, which would—for the first time—make it a federal crime to knowingly misrepresent the source of DNA used in any procedure that involves assisted reproduction.

Mommy, Me, And We: Why Black Mothers Have Turned To Doulas, Janessa Harris

Crossings: Swarthmore Undergraduate Feminist Research Journal

Maternal mortality mates have disproportionately affected black mothers for far too long due to the lack of value that black bodies hold in medical spaces. Because of this concerns voiced by black people are often disregarded and ignored until the very last minute. But what if this was changed? This paper will focus on how black mothers have worked against Western medical systems that silence our voices, but instead turn to doulas who work to make these mothers feel seen, heard, and cared for. Through this, we make birthing a careful and collective effort to turn Mommy&Me to Mommy&We.

Masculinized Sovereignty: Understanding Violence Towards Mice And The Nonhuman, Anisha Prakash

Crossings: Swarthmore Undergraduate Feminist Research Journal

This paper attempts to analyze how the definition of the normative “human” categorizes bodies that represent alternative political order against settler colonialism, and how the subjects that go against the dominant ideal of human are prohibited from living a free life, if not altogether eliminated. While conducting research, I view the lab as a site of social advancement where the differences between humans and nonhumans create a community of shared purpose. An interrogation of the laboratory as a site of violence can help us better understand how the State’s capitalist modes of advancement and production harm those of indigenous people, …

Emulating Future Neurotechnology Using Magic, Jay A. Olson, Mariève Cyr, Despina Z. Artenie, Thomas Strandberg, Lars Hall, Matthew L. Tompkins, Amir Raz, Petter Johansson

Psychology Faculty Articles and Research

Recent developments in neuroscience and artificial intelligence have allowed machines to decode mental processes with growing accuracy. Neuroethicists have speculated that perfecting these technologies may result in reactions ranging from an invasion of privacy to an increase in self-understanding. Yet, evaluating these predictions is difficult given that people are poor at forecasting their reactions. To address this, we developed a paradigm using elements of performance magic to emulate future neurotechnologies. We led 59 participants to believe that a (sham) neurotechnological machine could infer their preferences, detect their errors, and reveal their deep-seated attitudes. The machine gave participants randomly assigned positive …

Moral Status And The Oversight Of Research Involving Chimeric Animals, Patricia Marshall, Kaitlynn P. Craig

Faculty Scholarship

The use of nonhuman animals in research has long been a source of bioethical and scientific debate. We consider the oversight and use of nonhuman animals in chimeric research. We conducted interviews with twelve members of embryonic stem cell research oversight committees, nine members of institutional animal care and use committees, and fourteen scientists involved in human–nonhuman-animal chimeric research in different areas of the United States. Interviews addressed animal welfare and conceptual issues associated with moral status and humanization of nonhuman animals that contain human cells. Our findings suggest that concepts of enhanced moral status and consciousness are not very …

Renal Replacement Therapy Could Be Initiated In Patients With Severe Aki, Regardless Of Age And Critical Condition, El Hussain Shamsa

Clinical Research in Practice: The Journal of Team Hippocrates

A clinical decision report using:

Meersch M, Küllmar M, Schmidt C, et al. Long-Term Clinical Outcomes after Early Initiation of RRT in Critically Ill Patients with AKI. J Am Soc Nephrol. Mar 2018;29(3):1011-1019. https://doi.org/10.1681/asn.2017060694

for a critically ill elderly patient with severe acute kidney injury.