Bioethics and Medical Ethics Commons^™

Toward Ethical Provenance Tracking: The Ga4gh Model Data Access Agreement (Daa), Alexander Bernier, Bartha Maria Knoppers, Jonathan Lawson, Robyn Mcdougall, Maili Raven-Adams, Vasiliki Rahimzadeh

Center for Medical Ethics and Health Policy Staff Publications

Purpose: Standardizing contractual clauses that govern data access enables research institutions to responsibly steward genomic and related health data while enabling its efficient downstream reuse.

Methods: We describe a document analysis study using both qualitative and comparative law analytical approaches to identify the most common categories of clauses from 29 different data access agreements used by human biomedical research consortia globally. We furthermore characterized the legal positions and standard practices for each common element of the agreement and synthesized across them to develop model clauses. A total of 3 discussion sessions were organized virtually to refine the clauses among members …

Imagining Genomics And Population Health In 2050: Anticipating Future Research, Policy, And Governance Needs, Bartha Maria Knoppers, Yann Joly, Ma Apos N H Zawati, Habiba Alsafar, Jeffrey C Barrett, Laura Blackburn, Brian Hon-Yin Chung, Martina C Cornel, Edward S Dove, David Glazer, Calvin Wai-Loon Ho, Muin J Khoury, Anna C F Lewis, Anneke Lucassen, Peter F R Mills, Colin Mitchell, Nicola Mulder, Ainsley J Newson, Anthony Ng, Paul D P Pharoah, Vasiliki Rahimzadeh, Megan C Roberts, Saskia C Sanderson, Jeffrey M Skopek, Ron Zimmern, Eric M Meslin

Center for Medical Ethics and Health Policy Staff Publications

No abstract provided.

Access To Digital Health Technologies: Personalized Framework And Global Perspectives, Sanjiv M Narayan, Mina K Chung, Demilade Adedinsewo, Luisa C C Brant, Leslie L Davis, David Duncker, Jennifer L Hall, Janet K Han, Carolyn S P Lam, Eldrin Lewis, Joseph Loscalzo, Manlio F Márquez, Vasiliki Rahimzadeh, Fatima Rodriguez, Prashanthan Sanders, Emma Svennberg, Kenneth Stein, Mintu Turakhia, Clyde Yancy, Antonis A Armoundas

Center for Medical Ethics and Health Policy Staff Publications

The emergence and rapid adoption of digital health technologies (DHT) present unprecedented opportunities to democratize and reduce disparities in health care by monitoring health and disease at the point of care in all patients. However, limited access to DHT is becoming a major obstacle to realizing these goals. Access to DHT is influenced not only by well-recognized social determinants of health, but also by digital determinants of health, such as digital literacy and the need for broad access to digital infrastructure, as well as commercial and economic factors. Addressing these challenges and designing unbiased systems of care are essential to …

Clinicians’ Views On A Patient Decision Aid For Deep Brain Stimulation In Parkinson’S Disease, Hillary S King, Jennifer Blumenthal-Barby, Benjamin H Levi, Sol De Jesus, Harini Sarva, Laura Y Cabrera

Center for Medical Ethics and Health Policy Staff Publications

Introduction: For people with Parkinson's disease (PD), deciding whether to pursue deep brain stimulation (DBS) has become increasingly complex. Evidence suggests current approaches to collaborative decision-making may fall short of accepted standards. Thus, a decision support intervention, such as a patient decision aid (PtDA) may be warranted. PtDAs have been shown to improve patients' knowledge, expectations, and participation in decision-making for other, similar healthcare decisions. We therefore sought to assess neurologists' awareness of, and experience using, PtDAs, and to solicit their opinions on the ideal features of a PtDA for PD patients considering DBS.

Methods: Sixteen United States-based neurology clinicians …

Organ Chips And Translational Research: Identifying And Examining New Ethical Issues, Melanie Jeske

Center for Medical Ethics and Health Policy Staff Publications

Organ chips, also known as organ-on-a-chip devices, tissue chips, or microphysiological systems, have emerged over the last decade as a promising translational technology amidst growing concern about the translational crisis between laboratory research and patient bedside. Pointing to high rates of failure between nonhuman animal models and safety and efficacy in humans, organ chips and similar new approach methods have attracted substantial public and private investment. As human-cell-based alternatives to animal models, organ chips promise more predictive, efficient, and ethical platforms for pharmaceutical and toxicity testing. Engineered cultivation systems that enable cells to assemble into tissue-like structures (e.g. kidney, brain, …

Systematic Review: Burnout In Health Care Professionals, Nicolas X. Tovar

The Journal of Purdue Undergraduate Research

No abstract provided.

The Next Drug Epidemic Is Legal: The Nation's Kratom Problem Is More Complicated—And More Harmful—Than It Seems, Elizabeth Walsh

Capstones

This two-part health and science investigative piece reports how kratom and its offshoots have quietly fueled a lucrative and legal addiction epidemic for the last decade. While kratom’s derivative alkaloid 7-hyrdoxymitragynine made headlines this year and as the DEA is poised to ban the strong derivative, “natural” kratom and other kratom-derived products will remain. This piece tracks the history of the 'gas‑station opioid' crisis in the U.S. over ten years: what was thought to be an innocuous southeast Asian supplement has become multi-billion dollar industry built on gray‑area laws, marketed falsehoods, and regulatory loophooles.

Part 1: The ‘Gas Station Opioid’ …

Two Major Ontario Hospital Labs Bought Research Dogs From U.S. Breeder With Troubled Pastdogs Bred For Scientific And Medical Testing Suffer Abuse As The Scientific Industry Increasingly Turns To Alternatives For Research., Allison Hunter, Mary Beech, Sami Marshak, Kate Morano

Capstones

The purpose-bred dog breeding industry for research is little known. Each year, thousands of dogs are bred for scientific and medical testing, supplied to research facilities by a handful of major commercial breeders. But gaps in enforcement and regulation have allowed abuses to persist, even as the industry increasingly turns to alternatives to animal testing. Animal rights advocates have been decrying the treatment of these dogs. A federal Inspector General report found lax oversight of the industry, raising further concerns about how dogs are treated. This story was reported in collaboration with the Investigative Journalism Bureau, based in Toronto, and …

(Un)Intended Consequences Of Race In Medicine: The Ethics Of Race-Based Medical Practice And The Perpetuation Of Structural Racism, Allegra Merriweather

Electronic Theses and Dissertations

This dissertation proposes that race-based medicine acts as a form of structural racism that is ethically indefensible. While it may be claimed to be a neutral diagnostic tool, the medical use of race as a biological proxy only further enforces the very hierarchies it purports to remediate, reinscribing inequity from conception to death. Building off Jacques Ellul’s work on Technique, we interpret race-based medicine as a self-perpetuating system that values procedural expediency over moral accountability. In nine chapters, the analysis follows the ways this technique is manifested in genetics and assisted reproduction, where commodified racial selection preserves social hierarchies; in …

Limits On Wimp Dark Matter With Nai(Tl) Crystals In Three Years Of Cosine-100 Data, G H Yu, N Carlin, J Y Cho, J J Choi, S Choi, A C Ezeribe, L E França, C Ha, I S Hahn, S J Hollick, E J Jeon, H W Joo, W G Kang, M Kauer, B H Kim, H J Kim, J Kim, K W Kim, S H Kim, S K Kim, W K Kim, Y D Kim, Y H Kim, Y J Ko, D H Lee, E K Lee, H Lee, H S Lee, H Y Lee, I S Lee, J Lee, J Y Lee, M H Lee, S H Lee, S M Lee, Y J Lee, D S Leonard, N T Luan, V H A Machado, B B Manzato, R H Maruyama, R J Neal, S L Olsen, B J Park, H K Park, H S Park, J C Park, K S Park, S D Park, R L C Pitta, H Prihtiadi, S J Ra, C Rott, K A Shin, D F F S Cavalcante, M K Son, N J C Spooner, L T Truc, L Yang, Cosine-100 Collaboration

Faculty and Staff Publications

We report limits on weakly interacting massive particle (WIMP) dark matter derived from three years of data collected by the COSINE-100 experiment with NaI(Tl) crystals, achieving an improved energy threshold of 0.7 keV. This lowered threshold enhances sensitivity in the sub-GeV mass range, extending the reach for direct detection of low-mass dark matter. Although no excess of WIMP-like events was observed, the increased sensitivity enabled a model-insensitive comparison between the expected WIMP signal rate-based on mass limits from our data-and DAMA's reported modulation amplitude. Our findings strongly disfavor the DAMA signal as originating from WIMP interactions, fully excluding DAMA/LIBRA 3σ …

A Narrative Review Of Dual Loyalty Conflicts In Custodial Settings And Implications For Community Practice, Michelle Suh, Marc David Robinson, Holland Kaplan

Center for Medical Ethics and Health Policy Staff Publications

Dual loyalty dilemmas are conflicts between health care professionals' obligations toward their patients and third-party interests. These conflicts are more common and starker in custodial settings, such as jails and prisons, military detention facilities, immigration detention centers, and involuntary psychiatric institutions. Despite encountering patients in custody, health care professionals (HCPs) in community settings have limited knowledge and training. In this narrative review, we examined dual loyalty conflicts faced by HCPs working in custodial settings and then applied the identified themes to community-based hospitals where HCPs care for patients in custody. We searched databases for original papers relating to patients in …

Survey Of U.S. Reproductive Medicine Clinicians’ Attitudes On Polygenic Embryo Screening, Rémy A Furrer, Dorit Barlevy, Aayushi Gandhi, Shai Carmi, Todd Lencz, Stacey Pereira, Gabriel Lázaro-Muñoz

Center for Medical Ethics and Health Policy Staff Publications

Polygenic embryo screening (PES) is used to screen embryos for their genetic likelihood of developing complex conditions and traits. We surveyed 152 U.S. reproductive endocrinology and infertility specialists (REIs) on their views of PES. While most respondents (97%) were at least slightly familiar with PES, general approval of PES was low (12%), with the majority expressing disapproval (46%) or uncertainty (42%). A majority (58%) believed risks outweigh benefits, while only 16% felt benefits outweigh risks. Most clinicians (85-77%) were very or extremely concerned about low accuracy, confusion over results, false expectations, and eugenics. Nonetheless, when asked to vote on whether …

When 'More Isn't More': The Normative And Practical Case For Improving Genetic Data Infrastructure, Sofia Labrecque, Jonathan Lawson, Bronwyn Danielle Walsh, Vasiliki Rahimzadeh

Center for Medical Ethics and Health Policy Staff Publications

No abstract provided.

Aging And The Screen: Toxic Commodification Of The Female Body In The Substance (2024), Damlasu Uyug Sengun, Tuncer Mert Aydın, Zeynep Ozdamar Ertekin

Markets, Globalization & Development Review

Representations of the aging female body have increased in media, but their presence is still shaped by social norms and market-driven ideals. On the contrary, The Substance (2024), an absurd, postmodern body horror, provides us a provocative critique of contemporary society’s obsession with youth and beauty and the way our culture defines and commodifies aging, especially in relation to women’s bodies and identities. Our review of The Substance incorporates consumer culture theory with Julia Kristeva’s concept of the abject (1982), Laura Mulvey’s theory of the male gaze (1975), and Barbara Creed’s notion of the monstrous-feminine, (1993) to explore the toxic …

Is Ageism A Problem In Dentistry? It Would Appear That No One Or No Segment Of Society Is Immune From Acting Questionably—And, Possibly, Illegally—Toward Seniors., Stuart Segelnick Dds, Ms

The New York State Dental Journal

While attending local, stat and national dental meetings through the years, and even the most recent NYSDA House of Delegates meeting, I am repeatedly surprised to hear comments from senior society officers decrying the “old men in the room” and declaring they have had “enough of the old whitehaired men” dominating the higher echelons of our organization. The younger dentists listening nod their heads in approval. What these well-meaning, experienced dentists were trying to highlight was the need to have younger and more diverse dentists involved in organized dentistry.

A Historical Cohort Comparison After Inpatient Admission For Adolescents With Anorexia Nervosa: Feasibility Of Virtual Group Therapy, Elizabeth V Franklin, Margaret Mathias, Rachel Wolfe, Duc T Nguyen, Drusilla M Rosales, Sofia Pedroza, Albert C Hergenroeder, Constance M Wiemann

Center for Medical Ethics and Health Policy Staff Publications

Objective: Access to follow-up care after a medical admission for adolescents with anorexia nervosa (AN) is important; yet access can be delayed or unavailable. This study assessed the feasibility and acceptability of a supplemental virtual 8-week outpatient group therapy program following inpatient care. A secondary aim explored the outpatient program's impact on self-reported anxiety, disordered eating, and depression symptoms, and readmission rates.

Method: A retrospective chart review study compared 68 adolescents (aged 11-18) with AN enrolled in an 8-week group therapy program (Recovery and Prevention Program [RAPP]) to 64 adolescents who were not enrolled in RAPP (historical cohort). "RAPP completers" …

Capacity Over Cognition: A Case Of High-Risk Disease And Homelessness, Mikalah E. Maury, Avery M. Duncan, Rebecca A. Taylor, Mary Ann Beil, Maulikkumar A. Patel

HCA Healthcare Journal of Medicine

Background

Medical decision-making in indigent patients with baseline cognitive deficits and lack of supportive resources is a difficult problem that reveals many ethical issues. Performing high-level medical procedures (eg, invasive surgery, chemotherapy, radiation therapy) on these patients without supportive resources brings into question the efficacy and necessity of treatment if it places the patient at higher risk of additional complications and mortality.

Case Presentation

In this article, we present a case of a 62-year-old indigent man with a long history of encephalopathy secondary to alcohol abuse, presenting with an aggressive head and neck cancer impacting his quality of life.

Conclusion …

The History Of Nazi Neuroscience: Tracing Evidence Through Voids, Angela Gushue

Claremont-UC Undergraduate Research Conference on the European Union

During the Holocaust (1933-1945), voids were created by the destruction of ethics, morality, and human life. We can detect this absence because of material traces of the events. My paper applies the theory of relational ontology of absence to a collection of empty jars on display at the Josephinum, a medical history museum in Vienna. The jars once contained human remains of children murdered in the “euthanasia” program at Am Spiegelgrund, a psychiatric clinic in Vienna where 789 were killed during the Nazi era. These victims were not commemorated until the early 2000s, when the specimen jars were emptied and …

Ethical Care Is Excellent Care: Exploring How Dentists Can Approach Treating Visually Impaired Patients Through Different Ethical Frameworks, Elizabeth Gershater

Journal of the American College of Dentists

The Ozar-Hasegawa Annual Student Ethics Award recognizes an outstanding scholarly submission in dental ethics, published annually in the Journal of the American College of Dentists (JACD). This article highlights the winning work, selected for its significant contribution to advancing ethical reflection and professional responsibility in dentistry.

Upholding The Social Contract In A Profit-Driven System, Kamyar Sartipi

Journal of the American College of Dentists

The Ozar-Hasegawa Annual Student Ethics Award recognizes an outstanding scholarly submission in dental ethics, published annually in the Journal of the American College of Dentists (JACD). This article highlights the winning work, selected for its significant contribution to advancing ethical reflection and professional responsibility in dentistry.