Bioethics and Medical Ethics Commons^™

The Ethical Dilemma Of Whether Or Not To Withhold Life Sustaining Treatments For Newborns, Chloe G. Payne

OUR Journal: ODU Undergraduate Research Journal

Deeply complex ethical questions can arise when deciding whether to continue or stop life-sustaining treatments for critically ill newborns. Various factors that can influence these decisions are explored, such as the expected quality of life for the newborn, the resources that the family and hospital have at their disposal, and the role of religious beliefs. Emphasis is placed on the importance of striking a balance between the child's best interest, the autonomy of the parents, and the medical facts. The potential psychological and physical consequences for parents who decide to stop treatment, which often results in the loss of their …

Confidentiality Over Privacy, Stacey A. Tovino

Faculty Articles

No abstract provided.

The Ethical Basis For Student-To-Student Training In Dentistry, Larry E. Jenson Dds, Ma, Joel M. White Dds, Ms

Journal of the American College of Dentists

This article will focus on the most ethically contentious student-to student training practice: local anesthesia administration. We will examine the factors that contribute to a broader understanding of the ethical issues involved and introduce a framework that will help to clarify these issues. We have identified six stakeholders in this issue: the student-as-patient, the student-as-student, the university, the faculty, the general public and the profession.

Redlining And Opioid Overdose Outcomes: Do Historical Housing Policies Still Impact Health Today?, Sahana Paravantavida

Honors Theses

This study examines the relationship between historical housing policies and current health outcomes, specifically the impact of redlining on opioid overdose rates. Using data collected from the state of New Jersey, neighborhoods with a history of redlining have higher rates of opioid overdose deaths. My findings suggest that historical housing policies, which systematically excluded certain populations from accessing affordable housing and resources, continue to impact health outcomes today.

Privacy For Student-Patients: A Call To Action, Stacey A. Tovino

Faculty Articles

Consider a law student who has a mental or reproductive health issue that the student wishes to keep private. If the student seeks care at an off-campus health clinic that is not affiliated with the student’s law school or university, the student typically has a number of federally enforceable privacy rights. For example, the federal HIPAA Privacy Rule will typically apply and prohibit the clinic from disclosing the student’s protected health information to professors, parents, and other third parties without the student’s prior written authorization. The law student also will have the right to receive a notice of privacy practices, …

Enhancing Education To Mitigate Workplace Violence To Increase Staff Safety In A High Acuity Setting: A Quality Improvement Project, Michelle Crowley

Master's Theses and Capstones

Background: The current microsystem is a critical access 8 bed Emergency Department with 3 hallway beds. On average it can see anywhere from 30-50 patients in a 24 hour period. Due to the nature of the microsystem, staff are at high risk for experiencing workplace violence (WPV). Within this microsystem staff do not have a readily available communication device on their person in case of an adverse event leaving them susceptible to patient to staff WPV. Staff within this microsystem are Management of Aggressive Behavior (MOAB) 1 and 2 trained, however this does not provide education on risk factors for …

Clinical Vaccination Education Guideline For The African American Community, Margaret Chinedum Nwoji

Walden Dissertations and Doctoral Studies

AbstractVaccination hesitancy is high among African Americans and other people of color. The practice gap addressed in this project was the lack of a culturally sensitive clinical guideline for vaccination education relevant to the African American community. The practice-focused question was answered by developing an evidence-based Clinical Vaccination Education Guideline for the African American Community (CVEGAAC) that was validated by a group of four content experts using the Appraisal of Guidelines, Research, and Evaluation tool. The content experts scored each of the domains above 90%, implying that the CVEGAAC is of high quality and ready for implementation. The end users …

Dementia And The Fragility Of Self: Navigating Ethical Considerations In Medical Decision-Making, Grace Sauers

Scripps Senior Theses

As the global population ages, the incidence of degenerative memory disorders such as Alzheimer's and dementia is expected to rise. The frequency of complex medical decision-making challenges for these patients will subsequently increase. It is now common practice for patients to provide advance directives outlining the care they wish to receive; in the case they are deemed incompetent to perform adequate decision making. However, patients with dementia occasionally express wishes contrary to those stated in their advance directives. This divergence creates ambiguity about which wishes should be honored and for who those wishes are being honored for. I aim to …

Defining And Exploring Animal Sentience, Andrew N. Rowan, Joyce M. D'Silva Mrs, Ian J.H. Duncan, Nicholas Palmer

Animal Sentience

One of the commentaries on the target article notes that "animal sentience" is difficult to define operationally. This response to the commentaries develops a working, usable definition of animal sentience and examines the relationships between animal emotions and sentience.

Snail With The Right Heart (2021) By Maria Popova, Maughn Rollins Gregory

Picture Books

When a London scientist found a garden snail whose shell that spiraled left to right—opposite from others of its species—he sent it to the University of Nottingham for study. The snail’s internal organs were also arranged on the opposite side from other snails, including a heart on the right side of its body—a one-in-a-million condition known as situs inversus, which also occurs in humans. In explaining the snail’s story in terms of genetic evolution and biological reproduction, The Snail with the Right Heart also raises philosophical questions about the role of genetics, education, and personal choice in determining who …

Fresh Takes On Five Health Data Sharing Domains: Quality, Privacy, Equity, Incentives, And Sustainability, Christi J Guerrini, Mary A Majumder, Jill O Robinson, Robert Cook-Deegan, Matthew Blank, Juli Bollinger, Janis Geary, Amanda M Gutierrez, Maya Shrikant, Amy L Mcguire

Faculty, Staff and Students Publications

As entities around the world invest in repositories and other infrastructure to facilitate health data sharing, scalable solutions to data sharing challenges are needed. We conducted semi-structured interviews with 24 experts to explore views on potential issues and policy options related to health data sharing. In this Perspective, we describe and contextualize unconventional insights shared by our interviewees relevant to issues in five domains: data quality, privacy, equity, incentives, and sustainability. These insights question a focus on granular quality metrics for gatekeeping; challenge enthusiasm for maximalist risk disclosure practices; call attention to power dynamics that potentially compromise the patient's voice; …

5-Meo-Dmt For Post-Traumatic Stress Disorder: A Real-World Longitudinal Case Study, Anya Ragnhildstveit, Ryan Khan, Paul Seli, Lisa Claire Bass, River Jude August, Miriam Kaiyo, Nathaniel Barr, Laura Kate Jackson, Michael Santo Gaffrey, Joseph Peter Barsuglia, Lynnette Astrid Averill

Center for Medical Ethics and Health Policy Staff Publications

Psychedelic therapy is, arguably, the next frontier in psychiatry. It offers a radical alternative to longstanding, mainstays of treatment, while exciting a paradigm shift in translational science and drug discovery. There is particular interest in 5-methoxy-N,N-dimethyltryptamine (5-MeO-DMT)—a serotonergic psychedelic—as a novel, fast-acting therapeutic. Yet, few studies have directly examined 5-MeO-DMT for trauma- or stress-related psychopathology, including post-traumatic stress disorder (PTSD). Herein, we present the first longitudinal case study on 5-MeO-DMT for chronic refractory PTSD, in a 23-year-old female. A single dose of vaporized bufotoxin of the Sonoran Desert Toad (Incilius alvarius), containing an estimated 10−15 mg …

Using Visual Arts Education And Reflective Practice To Increase Empathy And Perspective Taking In Medical Students, Sina Rezaei, Andrew Childress, Bhavika Kaul, Kelly Magill Rosales, Alana Newell, Stacey Rose

Center for Medical Ethics and Health Policy Staff Publications

Introduction: Empathy is a critical competency for health care providers. However, empathy levels in medical students and residents have been shown to paradoxically decrease during training. Arts and humanities education and reflective practice may reduce burnout and promote empathy during medical school.

Methods: We developed and implemented an art education elective for medical students focusing on observation and reflective practice and measured its impact on empathy. Between 2017 and 2022, first-year medical students were offered an annual, 4-week elective led by art educators that featured visualization exercises and discussions on the role of bias and perspective in art interpretation. Curriculum …

Public Mental Health During And After The Sars-Cov-2 Pandemic: Opportunities For Intervention, Melissa M Karnaze, Brent M Kious, Lindsay Z Feuerman, Sarah Classen, Jill O Robinson, Cinnamon S Bloss, Amy L Mcguire

Center for Medical Ethics and Health Policy Staff Publications

Importance: During the pandemic, the number of United States adults reporting clinically significant symptoms of anxiety and depression sky-rocketed, up from 11% in 2020 to more than 40% in 2021. Our current mental healthcare system cannot adequately accommodate the current crisis; it is therefore important to identify opportunities for public mental health interventions.

Objective: Assess whether modifiable emotional factors may offer a point of intervention for the mental health crisis.

Design setting and participants: From January 13 to 15, 2022, adults living in the United States were recruited via Amazon Mechanical Turk to complete an anonymous survey.

Main outcomes and …

Researcher Views On Changes In Personality, Mood, And Behavior In Next-Generation Deep Brain Stimulation, Peter Zuk, Clarissa E Sanchez, Kristin Kostick-Quenet, Katrina A Muñoz, Lavina Kalwani, Richa Lavingia, Laura Torgerson, Demetrio Sierra-Mercado, Jill O Robinson, Stacey Pereira, Simon Outram, Barbara A Koenig, Amy L Mcguire, Gabriel Lázaro-Muñoz

Center for Medical Ethics and Health Policy Staff Publications

The literature on deep brain stimulation (DBS) and adaptive DBS (aDBS) raises concerns that these technologies may affect personality, mood, and behavior. We conducted semi-structured interviews with researchers (

2023 Canadian Surgery Forum: Sept. 20-23, 2023, Raphaëlle Brière, Marce Émond, Axel Benhamed, Pierre-Gilles Blanchard, Sébastien Drolet, Rogeh Habashi, Bahar Golbon, Jonas Shellenberger, Jesse Pasternak, Shaila Merchant, Jonas Shellenberger, Julie La, Monakshi Sawhney, Susan Brogly, Lina Cadili, Michael Horkoff, Scott Ainslie, Jeffrey Demetrick, Brian Chai, Kevin Wiseman, Hamish Hwang, Zainab Alhumoud, Amro Salem, Rebecca Lau, Katherine Aw, Carolyn Nessim, Nada Gawad, Kameela Alibhai, Chelsea Towaij, Danielle Doan, Isabelle Raîche, Rahim Valji, Simon Turner, Patricia Nicole Balmes, Hamish Hwang, S Morad Hameed, Jun Guang Kendric Tan, Ruwan Wijesuriya, Jun Guang Kendric Tan, Nicole Lee Chui Hew, Ruwan Wijesuriya, Matthew Lund, Jeffrey Hawel, Jamie Gregor, Ken Leslie, Tori Lenet, Daniel Mcisaac, Julie Hallet, Angela Jerath, Manoj Lalu, Stuart Nicholls, Justin Presseau, Alan Tinmouth, Michael Verret, Christopher Wherrett, Dean Fergusson, Guillaume Martel, Sahil Sharma, Tyler Mckechnie, Gaurav Talwar, Janhavi Patel, Luke Heimann, Aristithes Doumouras, Dennis Hong, Cagla Eskicioglu, Christine Wang, Michael Guo, Longlong Huang, Shaun Sun, Noelle Davis, Julian Wang, Samuel Skulsky, Lindsey Sikora, Isabelle Raîche, Hyo Jin Son, Denise Gee, David Gomez, James Jung, Rajajee Selvam, Nieve Seguin, Lisa Zhang, Ariane Lacaille-Ranger, Lindsey Sikora, Daniel Mcisaac, Husein Moloo, Alicia Follett, Holly, Michael Organ, David Pace, Saba Balvardi, Pepa Kaneva, Koorosh Semsar-Kazerooni, Carmen Mueller, Melina Vassiliou, Mohammed Al Mahroos, Julio F Fiore, Kevin Schwartzman, Liane Feldman, Michael Guo, Ahmer Karimuddin, Gui Ping Liu, Trafford Crump, Jason Sutherland, Kala Hickey, Erin M Bonisteel, Jurgienne Umali, Ibrahim Dogar, Geoffrey Warden, Darrell Boone, Alexander Mathieson, Michael Hogan, David Pace, Nieve Seguin, Husein Moloo, Yiran Li, Gordon Best, Rachel Leong, Sam Wiseman, Ahmed Amine Alaoui, Roy Hajjar, Evelyne Wassef, Danny Sebastien Metellus, François Dagbert, Rasmy Loungnarath, Richard Ratelle, Frank Schwenter, Éric Debroux, Ramses Wassef, Marianne Gagnon-Konamna, Alfons Pomp, Carole S Richard, Herawaty Sebajang, Ahmed Amine Alaoui, Roy Hajjar, François Dagbert, Rasmy Loungnarath, Herawaty Sebajang, Richard Ratelle, Frank Schwenter, Éric Debroux, Ramses Wassef, Marianne Gagnon-Konamna, Alfons Pomp, Manuela M Santos, Carole S Richard, Ge Shi, Regina Leung, Christina Lim, Sarah Knowles, Simran Parmar, Christine Wang, Estifanos Debru, Fardowsa Mohamed, Megan Anakin, Yung Lee, Yasith Samarasinghe, Jigish Khamar, Bradley Petrisor, Tyler Mckechnie, Cagla Eskicioglu, Ilun Yang, Hanaa N Mughal, Mumtaz Bhugio, Muhammed A Gok, Usman A Khan, Alisha R Fernandes, Richard Spence, Geoffrey Porter, C Marius Hoogerboord, Katerina Neumann, Michal Pillar, Michael Guo, Neraj Manhas, Adrienne Melck, Tania Kazi, Tyler Mckechnie, Ghazal Jessani, Luke Heimann, Yung Lee, Dennis Hong, Cagla Eskicioglu, Tyler Mckechnie, Léa Tessier, Vicki Archer, Lily Park, Dan Cohen, Sameer Parpia, Mohit Bhandari, Joanna Dionne, Cagla Eskicioglu, Sara Bolin, Rebecca Afford, Madeleine Armstrong, Ahmer Karimuddin, Regina Leung, Ge Shi, Christina Lim, Aaron Grant, Julie Ann Van Koughnett, Sarah Knowles, Elizabeth Clement, Claire Lange, Aishwi Roshan, Ahmer Karimuddin, Tracy Scott, Kara Nadeau, Jennifer Macmillan, Jaime Wilson, Madeleine Deschenes, Aruba Nurullah, Caitlin Cahill, Victoria H Chen, Keiko M Patterson, Sam M Wiseman, Betty Wen, Joshua Bhudial, Anise Barton, Jessica Lie, Chan Mi Park, Laiji Yang, Natalia Gouskova, Dae Hyun Kim, Rebecca Afford, Sara Bolin, Dunavan Morris-Janzen, Alastair Mclellan, Ahmer Karimuddin, Victoria Archer, Zacharie Cloutier, Annie Berg, Tyler Mckechnie, Wojtek Wiercioch, Cagla Eskicioglu, Joëlle Labonté, Pascale Bisson, André Bégin, Sonia Gabriela Cheng-Oviedo, Yves Collin, Alisha R Fernandes, Intekhab Hossain, James Ellsmere, Charbel El-Kefraoui, Uyen Do, Andrew Miller, Araz Kouyoumdjian, David Cui, Elahe Khorasani, Tara Landry, Alexandre Amar-Zifkin, Lawrence Lee, Liane Feldman, Julio Fiore, Tran Michelle Au, Mark Oppenheimer, Sarvesh Logsetty, Raghad Alshammari, Mohammad Alabri, Ahmer Karimuddin, Carl Brown, Manoj J Raval, Paul Terry Phang, Samantha Bird, Zarrukh Baig, Nawaf Abu-Omar, Dilip Gill, Soumiya Suresh, Nathan Ginther, Marta Karpinski, Amandeep Ghuman, Peter R A Malik, Kameela Alibhai, Taryn Zabolotniuk, Isabelle Raîche, Nada Gawad, Sarah Mashal, Nathalie Boulanger, Larry Watt, Tarek Razek, Paola Fata, Jeremy Grushka, Evan G Wong, Intekhab Hossain, Maxim Landry, Sarah Mackey, Nicholas Fairbridge, Alison Greene, Mark Borgoankar, Cullen Kim, Diana Decarvalho, David Pace, Robin Wigen, Emily Walser, Jacob Davidson, Michael Dorward, Leanne Muszynski, Celia Dann, Natashia Seemann, Jennifer Lam, Kaitlyn Harding, A J Lowik, Caroline Guinard, Sam Wiseman, Odelle Ma, Valentin Mocanu, Andrea Lin, Shahzeer Karmali, David Bigam, Kaitlyn Harding, Grant Greaves, Brent Parker, Vu Nguyen, Azim Ahmed, Belinda Yee, Joël Perren, Mathew Norman, Morgan Grey, Rafael Perini, Fahd Jowhari, Adrian Bak, Jeremy Drung, Laura Allen, Daniele Wiseman, Bradley Moffat, Jeremy K H Lee, Catherine Mcguire, Isabelle Raîche, Mihaela Tudorache, Nada Gawad, Lily J Park, Flavia K Borges, Rahima Nenshi, Michael Jacka, Diane Heels-Ansdell, Marko Simunovic, Jessica Bogach, Pablo E Serrano, Lehana Thabane, P J Devereaux, Sauleha Farooq, Erica Lester, Janice Kung, Nori Bradley, Gordon Best, San Ahn, Lisa Zhang, Nicole Prince, Olivia Cheng-Boivin, Nieve Seguin, Harry Wang, Liam Quartermain, Sherry Tan, Jennifer Shamess, Mathilde Simard, Humberto Vigil, Isabelle Raîche, Mary Hanna, Husein Moloo, Riordan Azam, Gary Ko, Mayanne Zhu, Yanuga Raveendran, Christine Lam, Janet Tang, Amrit Bajwa, Marina Englesakis, Emma Reel, Jordan Cleland, Laura Snell, Gianni Lorello, Tulin Cil, Hilalion San Ahn, Catherine Dube, Daniel Mcisaac, David Smith, Alexie Leclerc, Jennifer Shamess, Alaa Rostom, Natalia Calo, Kednapa Thavorn, Husein Moloo, Simon Laplante, Louis Liu, Nadia Khan, Allan Okrainec, Odelle Ma, Andrea Lin, Valentin Mocanu, Shahzeer Karmali, David Bigam, Gladys Bruyninx, Ilinca Georgescu, Vladislav Khokhotva, Gaurav Talwar, Sahil Sharma, Tyler Mckechnie, Shuling Yang, Jigish Khamar, Dennis Hong, Aristithes Doumouras, Cagla Eskicioglu, Karina Spoyalo, Thais Ayres Rebello, Gyan Chhipi-Shrestha, Kelly Mayson, Rehan Sadiq, Kasun Hewage, Andrea Macneill, Susan Muncner, Mo Yu Li, Igor Mihajlovic, Mark Dykstra, Ryan Snelgrove, Haili Wang, Christina Schweitzer, Sam M Wiseman, Ivneet Garcha, Uzair Jogiat, Vickie Baracos, Simon R Turner, Dean Eurich, Heather Filafilo, Armin Rouhi, Alexandre Bédard, Eric L R Bédard, Yogita S Patel, Jacob A Alaichi, John Agzarian, Wael C Hanna, Yogita S Patel, Jacob A Alaichi, Esther Provost, Bobby Shayegan, Anthony Adili, Wael C Hanna, Nikkita Mistry, Anthony A Gatti, Yogita S Patel, Forough Farrokhyar, Feng Xie, Wael C Hanna, Kerrie A Sullivan, Forough Farrokhyar, Yogita S Patel, Moishe Liberman, Simon R Turner, Anne V Gonzalez, Rahul Nayak, Kazuhiro Yasufuku, Wael C Hanna, Nikkita Mistry, Anthony A Gatti, Yogita S Patel, Sam Cross, Forough Farrokhyar, Feng Xie, Wael C Hanna, Pier-Luc Haché, Geraud Galvaing, Serge Simard, Jocelyn Grégoire, Jean Bussières, Yves Lacasse, Sami Sassi, Catherine Champagne, Anne-Sophie Laliberté, Jin Yong Jeong, Uzair Jogiat, Hillary Wilson, Alexandre Bédard, Pam Blakely, Jerry Dang, Warren Sun, Shahzeer Karmali, Eric L R Bédard, Clarence Wong, Suhail Yaqoob Hakim, Samim Azizi, Ayman El-Menyar, Sandro Rizoli, Hassan Al-Thani, Alisha R Fernandes, Daniel French, Chao Li, James Ellsmere, Shiloh Gossen, Daniel French, Jon Bailey, Phil Tibbo, Candice Crocker, Adom Bondzi-Simpson, Tiago Ribeiro, Biniam Kidane, Michael Ko, Natalie Coburn, Girish Kulkarni, Julie Hallet, Ahmed Faidh Ramzee, Ibrahim Afifi, Mushrek Alani, Ayman El-Menyar, Sandro Rizoli, Hassan Al-Thani, Talat Chughtai, Bright Huo, Daria Manos, Zhaolin Xu, Katerina-Maria Kontouli, Samuel Chun, John Fris, Allison M R Wallace, Daniel G French, Catherine Giffin, Moishe Liberman, Gabriel Dayan, Anne-Sophie Laliberté, Kazuhiro Yasufuku, Alexander Farivar, Biniam Kidane, Cara Weessies, Madeline Robinson, Leeann Bednarek, Gordon Buduhan, Richard Liu, Lawrence Tan, Sadeesh K Srinathan, Biniam Kidane, Awrad Nasralla, Najib Safieddine, Sayf Gazala, Carmine Simone, Negar Ahmadi, Roy Hilzenrat, Maurice Blitz, Shaun Deen, Michael Humer, Anand Jugnauth, Gordon Buduhan, Laura Kerr, Simon Sun, Ikennah Browne, Yogita Patel, Wael Hanna, Brandon Loshusan, Arefin Shamsil, Michael D Naish, Mehdi Qiabi, Rahul Nayak, Rajni Patel, Richard Malthaner, Patel Pooja, Ribeiro Roberto, Hirsch Greg, French Daniel, Caroline Huynh, Sohat Sharma, Arthur Vieira, Fagun Jain, Yejun Lee, Dorsa Mousa-Doust, Jonice Costa, Michelle Mezei, Kristine Chapman, Hannah Briemberg, Kristin Jack, Kyle Grant, James Choi, John Yee, Anna L Mcguire, Sami Aftab Abdul, Francois Khazoom, Katherine Aw, Rebecca Lau, Sebastien Gilbert, Sudhir Sundaresan, Daniel Jones, Andrew J E Seely, Patrick J Villeneuve, Donna E Maziak, Claudie-Anne Pigeon, Jonathan Frigault, Sébastien Drolet, Ève-Marie Roy, Kristopher Bujold-Pitre, Valérie Courval, Lea Tessier, Tyler Mckechnie, Yung Lee, Lily Park, Nirupa Gangam, Cagla Eskicioglu, Zacharie Cloutier, Tyler Mckechnie, Victoria Archer, Lily Park, Jay Lee, Ashaka Patel, Dennis Hong, Cagla Eskicioglu, Simarpreet Ichhpuniani, Tyler Mckechnie, Geoffrey Elder, Andrew Chen, Kathleen Logie, Aristithes Doumouras, Dennis Hong, Randy Benko, Cagla Eskicioglu, Matthew Castelo, Lawrence Paszat, Bettina Hansen, Adena Scheer, Neil Faught, Lena Nguyen, Nancy Baxter, Sahil Sharma, Tyler Mckechnie, Jigish Khamar, Kathy Wu, Cagla Eskicioglu, Tyler Mckechnie, Jigish Khamar, Yung Lee, Léa Tessier, Edward Passos, Aristithes Doumouras, Dennis Hong, Cagla Eskicioglu, Tyler Mckechnie, Jigish Khamar, Anjali Sachdeva, Yung Lee, Dennis Hong, Cagla Eskicioglu, Linda Y N Fei, Antonio Caycedo, Sunil Patel, Teodora Popa, Lee Boudreau, Andrea Grin, Tao Wang, Jessica Lie, Ahmer Karimuddin, Carl Brown, Terry Phang, Manoj Raval, Amandeep Ghuman, Sydney Candy, Kareena Nanda, Christine Li, Ryan Snelgrove, Mark Dykstra, Karen Kroeker, Haili Wang, Haven Roy, Ramzi M Helewa, Garrett Johnson, Harminder Singh, Eric Hyun, Dana Moffatt, Ashley Vergis, Patricia Balmes, Terry Phang, Michael Guo, Jerry Liu, Haven Roy, Sandra Webber, Farhana Shariff, Ramzi M Helewa, Dave Hochman, Jason Park, Garrett Johnson, Eric Hyun, Stephan Robitaille, Anna Wang, Michael Maalouf, Naser Alali, Hiba Elhaj, Sender Liberman, Patrick Charlebois, Barry Stein, Liane Feldman, Julio F Fiore, Lawrence Lee, Richard Hu, Ariane Lacaille-Ranger, San Ahn, Mihaela Tudorache, Husein Moloo, Lara Williams, Isabelle Raîche, Reilly Musselman, Maddy Lemke, Laura Allen, Nadeesha Samarasinghe, Kelly Vogt, Muriel Brackstone, Terry Zwiep, Elizabeth Clement, Claire Lange, Armaghan Alam, Anu Ghuman, Ahmer Karimuddin, Terry Phang, Manoj Raval, Carl Brown, Elizabeth Clement, Jerry Liu, Anu Ghuman, Ahmer Karimuddin, Terry Phang, Manoj Raval, Carl Brown, Hanaa N Mughal, Muhammed A Gok, Usman A Khan, Hanaa N Mughal, Muhammed A Gok, Usman A Khan, Hanaa N Mughal, Muhammed A Gok, Usman A Khan, Hanaa N Mughal, Muhammed A Gok, Usman A Khan, Nicholas James, Terry Zwiep, Julie Ann Van Koughnett, Dora Laczko, Tyler Mckechnie, Shuling Yang, Kathy Wu, Sahil Sharma, Yung Lee, Lily Park, Aristithes Doumouras, Dennis Hong, Sameer Parpia, Mohit Bhandari, Cagla Eskicioglu, Tyler Mckechnie, Léa Tessier, Stephanie Lee, Tania Kazi, Praveen Sritharan, Yung Lee, Aristithes Doumouras, Dennis Hong, Cagla Eskicioglu, Tyler Mckechnie, Yung Lee, Dennis Hong, Joanna Dionne, Aristithes Doumouras, Sameer Parpia, Mohit Bhandari, Cagla Eskicioglu, Olivia Hershorn, Amandeep Ghuman, Ahmer Karimuddin, Carl Brown, Manoj Raval, P Terry Phang, Alex Chen, Marylise Boutros, Natasha Caminsky, Teodora Dumitra, Sarah Faris-Sabboobeh, Marie Demian, Georgia Rigas, Olivia Monton, Allister Smith, Jeongyoon Moon, Marie Demian, Richard Garfinkle, Carol-Ann Vasilevsky, Fateme Rajabiyazdi, Marylise Boutros, Emily Courage, Danielle Leblanc, Matthew Benesch, Kala Hickey, Katia Hartwig, Casey Armstrong, Reniel Engelbrecht, Mitchell Fagan, Mark Borgaonkar, David Pace, Jessica Shanahan, Jeongyoon Moon, Ebram Salama, Anna Wang, Mylène Arsenault, Nathalie Leon, Carmen Loiselle, Fatemeh Rajabiyazdi, Marylise Boutros, Kelly Brennan, Mandip Rai, Ameer Farooq, Chad Mcclintock, Weidong Kong, Sunil Patel, Neyla Boukhili, Natasha Caminsky, Sarah Faris-Sabboobeh, Marie Demian, Marylise Boutros, Tiffany Paradis, Stephan Robitaille, Teodora Dumitra, A Sender Liberman, Patrick Charlebois, Barry Stein, Julio F Fiore, Liane S Feldman, Lawrence Lee, Terry Zwiep, Deborah Abner, Tarik Alam, Elaine Beyer, Michele Evans, Mary Hill, Debra Johnston, Karla Lohnes, Svea Menard, Nicole Pitcher, Kelly Sair, Bev Smith, Bonita Yarjau, Kimberly Leblanc, Nadeesha Samarasinghe, Ahmer A Karimuddin, Carl J Brown, P Terry Phang, Manoj J Raval, Karen Macdonell, Amandeep Ghuman, Alexandra Harvey, P Terry Phang, Ahmer Karimuddin, Carl J Brown, Manoj J Raval, Amandeep Ghuman, Olivia Hershorn, Amandeep Ghuman, Ahmer Karimuddin, Manoj Raval, P Terry Phang, Carl Brown, Kathleen Logie, Tyler Mckechnie, Yung Lee, Dennis Hong, Cagla Eskicioglu, Mirna Matta, Laura Baker, Jessica Hopkins, Ryan Rochon, Donald Buie, Anthony Maclean, Amandeep Ghuman, Jason Park, Ahmer A Karimuddin, P Terry Phang, Manoj J Raval, Carl J Brown, Ameer Farooq, Amandeep Ghuman, Sunil Patel, Hugh Macdonald, Ahmer Karimuddin, Manoj Raval, P Terry Phang, Carl Brown, Vanessa Wiseman, Kelly Brennan, Sunil Patel, Ameer Farooq, Shaila Merchant, Weidong Kong, Chad Mcclintock, Chris Booth, Tim Hann, Alessandro Ricci, Sunil Patel, Kelly Brennan, Vanessa Wiseman, Chad Mcclintock, Weidong Kong, Ameer Farooq, Rohan Kakkar, Olivia Hershorn, Manoj Raval, P Terry Phang, Ahmer Karimuddin, Amandeep Ghuman, Carl Brown, Vanessa Wiseman, Ameer Farooq, Sunil Patel, Roy Hajjar, Emmanuel Gonzalez, Gabriela Fragoso, Manon Oliero, Ahmed Amine Alaoui, Hervé Vennin Rendos, Souad Djediai, Thibault Cuisiniere, Patrick Laplante, Claire Gerkins, Ayodeji Samuel Ajayi, Khoudia Diop, Nassima Taleb, Sophie Thérien, Frédéricke Schampaert, Hefzi Alratrout, François Dagbert, Rasmy Loungnarath, Herawaty Sebajang, Frank Schwenter, Ramses Wassef, Richard Ratelle, Éric Debroux, Jean-François Cailhier, Bertrand Routy, Borhane Annabi, Nicholas J B Brereton, Carole Richard, Manuela M Santos, Tamara Gimon, Helen Macrae, Anthony De Buck Van Overstraeten, Mantaj Brar, Sami Chadi, Erin Kennedy, Laura Baker, Jessica Hopkins, Ryan Rochon, Donald Buie, Anthony Maclean, Lily J Park, Victoria Archer, Tyler Mckechnie, Yung Lee, Daniel Mcisaac, Pavel Rashanov, Cagla Eskicioglu, Husein Moloo, P J Devereaux, Rehab Alsayari, Tyler Mckechnie, Simarpreet Ichhpuniani, Yung Lee, Cagla Eskicioglu, Roy Hajjar, Manon Oliero, Gabriela Fragoso, Ayodeji Samuel Ajayi, Ahmed Amine Alaoui, Hervé Vennin Rendos, Annie Calvé, Thibault Cuisinière, Claire Gerkins, Sophie Thérien, Nassima Taleb, François Dagbert, Herawaty Sebajang, Rasmy Loungnarath, Frank Schwenter, Richard Ratelle, Ramses Wassef, Eric Debroux, Carole Richard, Manuela M Santos, Erin Kennedy, Marko Simunovic, Selina Schmocker, Carl Brown, Anthony Maclean, Sender Liberman, Sébastien Drolet, Katerina Neumann, Peter Stotland, Kartik Jhaveri, Richard Kirsch, Hafssah Alnajem, Huseen Alibrahim, Christian Giundi, Alex Chen, Georgia Rigas, Haroon Munir, Ali Safar, Sarah Sabboobeh, Jessica Holland, Marylise Boutros, Erin Kennedy, Carole Richard, Marko Simunovic, Selina Schmocker, Carl Brown, Anthony Maclean, Sender Liberman, Sébastien Drolet, Katerina Neumann, Peter Stotland, Kartik Jhaveri, Richard Kirsch, Gladys Bruyninx, Dilip Gill, Rehab Alsayari, Tyler Mckechnie, Yung Lee, Dennis Hong, Cagla Eskicioglu, Lisa Zhang, Sean Abtahi, Allison Chhor, Gordon Best, Isabelle Raîche, Reilly Musselman, Lara Williams, Husein Moloo, Natasha Grace Caminsky, Jenny Jeongyoon Moon, Daniel Marinescu, Allison Pang, Carol-Ann Vasilevsky, Marylise Boutros, Mohammed Al-Abri, Elliott Gee, Ahmer Karimuddin, P Terry Phang, Carl Brown, Manoj Raval, Amandeep Ghuman, Nina Morena, Libby Ben-Zvi, Victoria Hayman, Mary Hou, Diana Nguyen, Carrie A Rentschler, Ari N Meguerditchian, Zuhaib Mir, Linda Fei, Sandra Mckeown, Rachelle Dinchong, Nicholas Cofie, Nancy Dalgarno, Rona Cheifetz, Shaila Merchant, Alisha Jaffer, Carolyn Cullinane, Gerard Feeney, Amirhossein Jalali, Anne Merrigan, Chwanrow Baban, Juliette Buckley, Shona Tormey, Matthew Benesch, Rongrong Wu, Kazuaki Takabe, Matthew Benesch, Shalana O'Brien, Karineh Kazazian, Ali Hosni Abdalaty, Christine Brezden, Ron Burkes, Eric Chen, Anand Govindarajan, Raymond Jang, Erin Kennedy, Jelena Lukovic, Aruz Mesci, Fayez Quereshy, Carol Swallow, Sami Chadi, Rogeh Habashi, Jesse Pasternak, Wanda Marini, Weiyue Zheng, Kiichi Murakami, Pamela Ohashi, Michael Reedijk, Richard Hu, Victoria Ivankovic, Lewis Han, Louise Gresham, Ranjeeta Mallick, Rebecca Auer, Tiago Ribeiro, Adom Bondzi-Simpson, Natalie Coburn, Julie Hallet, Tulin Cil, Adam Fontebasso, Alex Lee, Ericka Bernard-Bedard, Boaz Wong, Heidi Li, Elysia Grose, Olivier Brandts-Longtin, Katie Aw, Rebecca Lau, Ahmad Abed, James Stevenson, Rahat Sheikh, Richard Chen, Stephanie Johnson-Obaseki, Carolyn Nessim, Rachel Liu Hennessey, Adam T Meneghetti, Michael Bildersheim, Antoine Bouchard-Fortier, Gregg Nelson, Lloyd Mack, Farhad Ghasemi, Mahtab Malekian Naeini, Armen Parsyan, Yuvreet Kaur, Andrea Covelli, Fayez Quereshy, Elena Elimova, Elan Panov, Jelena Lukovic, James Brierley, Bev Burnett, Carol Swallow, Ashley Eom, David Kirkwood, Nicole Hodgson, Aristithes Doumouras, Jessica Bogach, Timothy Whelan, Mark Levine, Elena Parvez, Deanna Ng, Karineh Kazazian, Kiera Lee, Yi Qing Lu, Dae Kyum Kim, Marco Magalhaes, Emma Grigor, Angel Arnaout, Jing Zhang, Elliott K Yee, Julie Hallet, Nicole J Look Hong, Lena Nguyen, Natalie Coburn, Frances C Wright, Sonal Gandhi, Katarzyna J Jerzak, Andrea Eisen, Amanda Roberts, Daniel Ben Lustig, May Lynn Quan, Tien Phan, Antoine Bouchard-Fortier, Jeff Cao, Conrad Bayley, Akie Watanabe, Susan Yao, Eitan Prisman, Gary Groot, Elliot Mitmaker, Ross Walker, Jonn Wu, Jesse Pasternak, Chi Kien Lai, Antoine Eskander, Jonathan Wasserman, Frederic Mercier, Kathryn Roth, Sabrina Gill, Carlos Villamil, David Goldstein, Vicki Munro, Alok Pathak, Debon Lee, Anne Nguyen, Sam Wiseman, Luckshi Rajendran, Marco Claasen, Tommy Ivanics, Nazia Selzner, Ian Mcgilvray, Mark Cattral, Anand Ghanekar, Carol-Anne Moulton, Trevor Reichman, Chaya Shwaartz, Ur Metser, Ron Burkes, Erin Winter, Steven Gallinger, Gonzalo Sapisochin, Juan Glinka, Evelyn Waugh, Ken Leslie, Anton Skaro, Epharaim Tang, Juan Glinka, Janyssa Charbonneau, Alexandre Brind'amour, Alexis F Turgeon, Sarah O'Connor, Thomas Couture, Yifan Wang, Osamu Yoshino, Michael Driedger, Michael Beckman, Dionisios Vrochides, John Martinie, Abdulrahman Alabduljabbar, Maral Aali, Christopher Lightfoot, Boris Gala-Lopez, Maud Labelle, Frédérick D'Aragon, Yves Collin, Dhruvin Hirpara, Jonathan Irish, Mohammed Rashid, Tharsiya Martin, Alice Zhu, Leah Mcknight, Amber Hunter, Shiva Jayaraman, Alice Wei, Natalie Coburn, Frances Wright, Katlin Mallette, Ahmad Elnahas, Nawar Alkhamesi, Christopher Schlachta, Jeffrey Hawel, Ephraim Tang, Subin Punnen, Jade Zhong, Yuwei Yang, Lucas Streith, Jordan Yu, Stephen Chung, Peter Kim, Stephanie Chartier-Plante, Maja Segedi, Michael Bleszynski, Molly White, Melanie E Tsang, Shiva Jayaraman, Kimberley Lam-Tin-Cheung, Shiva Jayaraman, Melanie Tsang, Brittany Greene, Panthea Pouramin, Susan Allen, David Evan Nelson, Mark Walsh, Julien Côté, Rolando Rebolledo, Mélanie Borie, Ahmed Menaouar, Carolyne Landry, Marylène Plasse, Richard Létourneau, Michel Dagenais, Zhixia Rong, André Roy, Eve Beaudry-Simoneau, Franck Vandenbroucke-Menu, Réal Lapointe, Pasquale Ferraro, Shant Der Sarkissian, Nicolas Noiseux, Simon Turcotte, Yara Haddad, Antoine Bernard, Clara Lafortune, Nathalie Brassard, Annie Roy, Claude Perreault, Gaétan Mayer, Mieczyslaw Marcinkiewicz, Majambu Mbikay, Michel Chrétien, Simon Turcotte, Evelyn Waugh, Lynne Sinclair, Juan Glinka, Elizabeth Shin, Crystal Engelage, Ephraim Tang, Anton Skaro, Hala Muaddi, Jennifer Flemming, Bettina Hansen, Laura Dawson, Grainne O'Kane, Jordan Feld, Gonzalo Sapisochin, Alice Zhu, Shiva Jayaraman, Sean Cleary, Anthonie Hamel, Claudie-Anne Pigeon, Camille Marcoux, Thanh-Quan Philips Ngo, Isabelle Deshaies, Sarah Mansouri, Nawal Amhis, Maxime Léveillé, Christine Lawson, Carol Achard, Carolina Ilkow, Yves Collin, Lee-Hwa Tai, Lily Park, Christopher Griffiths, Daniel D'Souza, Felipe Rodriguez, Tyler Mckechnie, Pablo E Serrano, Rachel Liu Hennessey, Yuwei Yang, Adam T Meneghetti, O Neely M Panton, Chieh Jack Chiu, Oscar Henao, Fernando Spencer Netto, Marguerite Mainprize, Rachel Liu Hennessey, Chieh Jack Chiu, Rachel Liu Hennessey, Chieh Jack Chiu, Sukhdeep Jatana, Kevin Verhoeff, Valentin Mocanu, Uzair Jogiat, Daniel Birch, Shahzeer Karmali, Noah Switzer, Alexandra Hetherington, Kevin Verhoeff, Valentin Mocanu, Daniel Birch, Shahzeer Karmali, Noah Switzer, Ali Safar, Najla Al-Ghaithi, Phil Vourtzoumis, Sebastian Demyttenaere, Olivier Court, Amin Andalib, Hillary Wilson, Kevin Verhoeff, Jerry Dang, Janice Kung, Noah Switzer, Daniel Birch, Karen Madsen, Shahzeer Karmali, Valentin Mocanu, Ted Wu, Wenjing He, Ashley Vergis, Krista Hardy, Marta Zmudzinski, Felica Daenick, Janice Linton, Marta Zmudzinski, Melinda Fowler-Woods, Wenjing He, Amanda Fowler-Woods, Geraldine Shingoose, Ashley Vergis, Krista Hardy, Yung Lee, Aristithes Doumouras, Amber Molnar, Francis Nguyen, Dennis Hong, Romano Schneider, Andras B Fecso, Priya Sharma, Azusa Maeda, Timothy Jackson, Allan Okrainec, Cheynne Mclean, Valentin Mocanu, Daniel Birch, Shahzeer Karmali, Noah Switzer, Sarah Macvicar, Jerry Dang, Valentin Mocanu, Kevin Verhoeff, Uzair Jogiat, Shahzeer Karmali, Daniel Birch, Noah Switzer, Steffane Mclennan, Kevin Verhoeff, Kieran Purich, Jerry Dang, Janice Kung, Valentin Mocanu, Steffane Mclennan, Kevin Verhoeff, Valentin Mocanu, Uzair Jogiat, Daniel W Birch, Shahzeer Karmali, Noah J Switzer, Lisa Jeffery, Hamish Hwang, Alexis Ryley, Morgan Schellenberg, Natthida Owattanapanich, Brent Emigh, Chance Nichols, Joshua Dilday, Chaiss Ugarte, Atsushi Onogawa, Kazuhide Matsushima, Matthew J Martin, Kenji Inaba, Morgan Schellenberg, Brent Emigh, Chance Nichols, Joshua Dilday, Chaiss Ugarte, Atsushi Onogawa, Doug Shapiro, Daniel Im, Kenji Inaba, Morgan Schellenberg, Natthida Owattanapanich, Chaiss Ugarte, Lydia Lam, Matthew J Martin, Kenji Inaba, Joao Rezende-Neto, Sunil Patel, Lisa Zhang, Zuhaib Mir, Madeline Lemke, William Leeper, Laura Allen, Eric Walser, Kelly Vogt, Tiago Ribeiro, Sarah Bateni, Adom Bondzi-Simpson, Natalie Coburn, Julie Hallet, Victoria Barabash, Austin Barr, Wing Chan, Suhail Yaqoob Hakim, Ayman El-Menyar, Sandro Rizoli, Hassan Al-Thani, Hanaa N Mughal, Mumtaz Bhugio, Muhammed A Gok, Usman A Khan, Ahmed Warraich, Lawrence Gillman, Markus Ziesmann, Jovana Momic, Nouf Yassin, Mella Kim, Amy Makish, Eric Walser, Shane Smith, Ian Ball, Brad Moffat, Neil Parry, Kelly Vogt, Alex Lee, Jenna Kroeker, David Evans, Nahal Fansia, Chana Notik, Evan G Wong, Guire Coyle, David Seben, Jaiden Smith, Brandy Tanenbaum, Corey Freedman, Avery Nathens, Robert Fowler, Prachikumari Patel, Tim Elrick, Meghan Ewing, Steven Di Marco, Tarek Razek, Jeremy Grushka, Evan G Wong, Lily J Park, Flavia K Borges, Rahima Nenshi, Pablo E Serrano, Paul Engels, Kelly Vogt, Emily Di Sante, Jessica Vincent, Kate Tsiplova, P J Devereaux, Gaurav Talwar, Joanna Dionne, Tyler Mckechnie, Yung Lee, Tania Kazi, Abdullah El-Sayes, Jessica Bogach, Dennis Hong, Cagla Eskicioglu, Matthew Connell, Amanda Klooster, Jenna Beck, Kevin Verhoeff, Matt Strickland, Ram Anantha, Lilly Groszman, Natasha G Caminsky, Larry Watt, Nathalie Boulanger, Tarek Razek, Jeremy Grushka, Steven Di Marco, Evan G Wong, Rachel Livergant, Brooke Mcdonald, Catherine Binda, Shreya Luthra, Nicole Ebert, Ryan Falk, Emilie Joos

Center for Medical Ethics and Health Policy Staff Publications

No abstract provided.

Deep Brain Stimulation For Pediatric Dystonia: Clinicians' Perspectives On The Most Pressing Ethical Challenges, Kristin M Kostick-Quenet, Lavina Kalwani, Laura N Torgerson, Katrina Munoz, Clarissa Sanchez, Eric A Storch, J S Blumenthal-Barby, Gabriel Lazáro-Muñoz

Center for Medical Ethics and Health Policy Staff Publications

Introduction: Pediatric deep brain stimulation (pDBS) is commonly used to manage treatment-resistant primary dystonias with favorable results and more frequently used for secondary dystonia to improve quality of life. There has been little systematic empirical neuroethics research to identify ethical challenges and potential solutions to ensure responsible use of DBS in pediatric populations.

Methods: Clinicians (n = 29) who care for minors with treatment-resistant dystonia were interviewed for their perspectives on the most pressing ethical issues in pDBS.

Results: Using thematic content analysis to explore salient themes, clinicians identified four pressing concerns: (1) uncertainty about risks and benefits of pDBS …

Policy Options To Facilitate Cancer Genomic Variant Data Sharing: Outcomes Of A Modified Policy Delphi, Jill O Robinson, Amira Daoud, Janis Geary, Vasiliki Rahimzadeh, Juli Bollinger, Christi J Guerrini, Robert Cook-Deegan, Amy L Mcguire, Mary A Majumder

Center for Medical Ethics and Health Policy Staff Publications

Sharing cancer gene variant and relevant clinical data could accelerate progress in cancer genomics. However, data sharing is currently impeded by issues related to financial sustainability, equity, incentives, privacy and security, and data quality. Evidence-based policy options to facilitate data sharing in these domains, and ultimately improve interpretation of cancer-associated genomic variants, are therefore needed. We conducted a modified policy Delphi with expert stakeholders that involved generating, evaluating, and ranking potential policy options to address these issues, with a focus on the US context. We found policy options in the financial sustainability domain were highly ranked, particularly stable funding for …

Figg At 5: An Update On Us Public Perspectives On Forensic Investigative Genetic Genealogy Five Years After Its Introduction To Criminal Investigations, Sophie L Schott, April Adams, Ryan J Dougherty, Taylor Montgomery, Folasade C Lapite, Faith E Fletcher

Center for Medical Ethics and Health Policy Staff Publications

Nearly 50 years after Roe versus Wade, the United States Supreme Court's decision in Dobbs versus Jackson Women's Health Organization unraveled the constitutional right to abortion, allowing individual states to severely restrict or ban the procedure. In response, leading medical, public health, and community organizations have renewed calls for research to elucidate and address the burgeoning social and medical consequences of new abortion restrictions. Abortion research not only includes studies that establish the safety, quality, and efficacy of evidence-based abortion care protocols, but also encompasses studies on the availability of abortion care, the consequences of being denied an abortion, and …

Clinician Perceptions Of Passport For Care, A Web-Based Clinical Decision Support Tool For Survivorship Care Plan Delivery, Jason E King, Michael C O'Connor, Ellen Shohet, Susan M Krause, Michael E Scheurer, Marc E Horowitz, David G Poplack, C Michael Fordis, Maria M Gramatges

Center for Medical Ethics and Health Policy Staff Publications

Background: The Children's Oncology Group Long-Term Follow-Up Guidelines provide exposure-based risks and recommendations for late effects screening of survivors of childhood cancer. Passport for Care (PFC) is a web-based clinical decision support tool for generating a personalized survivorship care plan (SCP) derived from the Guidelines and user-entered exposures. We assessed PFC clinician user practices and perceptions of PFC impact on clinic workflow, guidelines application, and survivor shared decision-making.

Procedure: A 35-item REDCap survey was emailed to all PFC users (n = 936) in 146 current and former PFC user clinics. Anonymous responses were permitted. Results were summarized and compared with …

Cannabis-Assisted Psychotherapy For Complex Dissociative Posttraumatic Stress Disorder: A Case Report, Anya Ragnhildstveit, Miriam Kaiyo, Matthew Brian Snyder, Laura Kate Jackson, Alex Lopez, Chasity Mayo, Alyssa Claire Miranda, River Jude August, Paul Seli, Reid Robison, Lynnette Astrid Averill

Center for Medical Ethics and Health Policy Staff Publications

Background: A dissociative subtype of posttraumatic stress disorder, known as "D-PTSD", has been included in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition. In addition to meeting criteria for PTSD, patients endorse prominent dissociative symptoms, namely depersonalization and derealization, or detachment from one's self and surroundings. At present, this population is supported by a highly heterogeneous and undeveloped literature. Targeted interventions are therefore lacking, and those indicated for PTSD are limited by poor efficacy, delayed onset of action, and low patient engagement. Here, we introduce cannabis-assisted psychotherapy (CAP) as a novel treatment for D-PTSD, drawing parallels to psychedelic …

Renewed Calls For Abortion-Related Research In The Post-Roe Era, Sophie L Schott, April Adams, Ryan J Dougherty, Taylor Montgomery, Folasade C Lapite, Faith E Fletcher

Center for Medical Ethics and Health Policy Staff Publications

Nearly 50 years after Roe versus Wade, the United States Supreme Court's decision in Dobbs versus Jackson Women's Health Organization unraveled the constitutional right to abortion, allowing individual states to severely restrict or ban the procedure. In response, leading medical, public health, and community organizations have renewed calls for research to elucidate and address the burgeoning social and medical consequences of new abortion restrictions. Abortion research not only includes studies that establish the safety, quality, and efficacy of evidence-based abortion care protocols, but also encompasses studies on the availability of abortion care, the consequences of being denied an abortion, and …

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. …

Validation Of A Process For Shared Decision-Making In Pediatrics, Douglas J Opel, Holly Hoa Vo, Nicolas Dundas, Heather Spielvogle, Amanda Mercer, Benjamin S Wilfond, Jonna Clark, Carrie L Heike, Elliott M Weiss, Mersine A Bryan, Seema K Shah, Carolyn A Mccarty, Jeffrey D Robinson, Jennifer Blumenthal-Barby, Jon Tilburt

Center for Medical Ethics and Health Policy Staff Publications

OBJECTIVE: We sought to confirm, refute, or modify a 4-step process for implementing shared decision-making (SDM) in pediatrics that involves determining 1) if the decision includes >1 medically reasonable option; 2) if one option has a favorable medical benefit-burden ratio compared to other options; and 3) parents' preferences regarding the options; then 4) calibrating the SDM approach based on other relevant decision characteristics.

METHODS: We videotaped a purposive sample of pediatric inpatient and outpatient encounters at a single US children's hospital. Clinicians from 7 clinical services (craniofacial, neonatology, oncology, pulmonary, pediatric intensive care, hospital medicine, and sports medicine) were eligible. …

The Moralizing Effect: Self-Directed Emotions And Their Impact On Culpability Attributions, Elisabetta Sirgiovanni, Joanna Smolenski, Ben Abelson, Taylor Webb

Center for Medical Ethics and Health Policy Staff Publications

Introduction: A general trend in the psychological literature suggests that guilt contributes to morality more than shame does. Unlike shame-prone individuals, guilt-prone individuals internalize the causality of negative events, attribute responsibility in the first person, and engage in responsible behavior. However, it is not known how guilt- and shame-proneness interact with the attribution of responsibility to others.

Methods: In two Web-based experiments, participants reported their attributions of moral culpability (i.e., responsibility, causality, punishment and decision-making) about morally ambiguous acts of killing in different conditions. In Study 1 the vignettes were presented in the 1st person, while in Study 2 in …

Payer Reimbursement Practices And Incentives For Improving Interpretation Of Germline Genetic Testing, Patricia Deverka, Janis Geary, Charles Mathews, Matan Cohen, Gillian Hooker, Mary Majumder, Zuzana Skvarkova, Robert Cook-Deegan

Center for Medical Ethics and Health Policy Staff Publications

Germline genetic testing for inherited cancer risk has shifted to multi-gene panel tests (MGPTs). While MGPTs detect more pathogenic variants, they also detect more variants of uncertain significance (VUSs) that increase the possibility of harms such as unnecessary surgery. Data sharing by laboratories is critical to addressing the VUS problem. However, barriers to sharing and an absence of incentives have limited laboratory contributions to the ClinVar database. Payers can play a crucial role in the expansion of knowledge and effectiveness of genetic testing. Current policies affecting MGPT reimbursement are complex and create perverse incentives. Trends in utilization and coverage for …

Heritability Of Nervous System Tumors: A Sibling-Based Design, Giorgio Tettamanti, Ralf Kuja-Halkola, Catharina Lavebratt, Mats Talbäck, Alexander Viktorin, Michael E Scheurer, Maria Feychting, Maral Adel Fahmideh

Center for Medical Ethics and Health Policy Staff Publications

Background: The contribution of genetic and environmental factors to susceptibility to nervous system tumors remains unclear. We performed a quantitative genetic study using a sibling design to estimate the heritability of nervous system tumors, as well as the proportion of the risk of these tumors, which is attributable to environmental factors.

Methods: We conducted a population-based cohort study using Swedish National Register data. All individuals born in Sweden during 1950-2010 with available information on both biological parents were included. A Multi-Generation Register was used to identify family clusters, including both full- and half-siblings. Initially, one index person was randomly selected …

Treatment And Life Goals Among Veterans With Gulf War Illness, Nicole Sullivan, Hannah Schorpp, Sarah Crosky, Scott Thien, Drew A Helmer, David R Litke, Wilfred R Pigeon, Karen S Quigley, Lisa M Mcandrew

Center for Medical Ethics and Health Policy Staff Publications

Medically unexplained syndromes (MUS), also termed persistent physical symptoms, are both prevalent and disabling. Yet treatments for MUS are marked by high rates of patient dissatisfaction, as well as disagreement between patients and providers on the management of persistent physical symptoms. A better understanding of patient-generated goals could increase collaborative goal setting and promote person-centered care, a critical component of MUS treatment; yet research in this area is lacking. This paper aimed to develop a typology of treatment and life goals among Gulf War veterans with a medically unexplained syndrome (Gulf War Illness). We examined participants’ responses to open-ended questions …

“Extremely Slow And Capricious”: A Qualitative Exploration Of Genetic Researcher Priorities In Selecting Shared Data Resources, M Grace Trinidad, Kerry A Ryan, Chris D Krenz, J Scott Roberts, Amy L Mcguire, Raymond De Vries, Brian J Zikmund-Fisher, Sharon Kardia, Erica Marsh, Jane Forman, Madison Kent, David Wilborn, Kayte Spector-Bagdady

Center for Medical Ethics and Health Policy Staff Publications

Purpose: Genetic researchers' selection of a database can have scientific, regulatory, and ethical implications. It is important to understand what is driving database selection such that database stewards can be responsive to user needs while balancing the interests of communities in equitably benefiting from advances.

Methods: We conducted 23 semistructured interviews with US academic genetic researchers working with private, government, and collaboratory data stewards to explore factors that they consider when selecting a genetic database.

Results: Interviewees used existing databases to avoid burdens of primary data collection, which was described as expensive and time-consuming. They highlighted ease of access as …

Payer Reimbursement Practices And Incentives For Improving Interpretation Of Germline Genetic Testing, Patricia Deverka, Janis Geary, Charles Mathews, Matan Cohen, Gillian Hooker, Mary Majumder, Zuzana Skvarkova, Robert Cook-Deegan

Center for Medical Ethics and Health Policy Staff Publications

Germline genetic testing for inherited cancer risk has shifted to multi-gene panel tests (MGPTs). While MGPTs detect more pathogenic variants, they also detect more variants of uncertain significance (VUSs) that increase the possibility of harms such as unnecessary surgery. Data sharing by laboratories is critical to addressing the VUS problem. However, barriers to sharing and an absence of incentives have limited laboratory contributions to the ClinVar database. Payers can play a crucial role in the expansion of knowledge and effectiveness of genetic testing. Current policies affecting MGPT reimbursement are complex and create perverse incentives. Trends in utilization and coverage for …