Medical Genetics 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. …

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 …

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 …

Enhancing Reciprocity, Equity And Quality Of Ethics Review For Multisite Research During Public Health Crises: The Experience Of The Covid-19 Clinical Research Coalition Ethics Working Group, Vasiliki Rahimzadeh, Jennyfer Ambe, Jantina De Vries

Center for Medical Ethics and Health Policy Staff Publications

In this paper we report findings from a commissioned report to the COVID-19 Clinical Research Coalition on approaches to streamline multinational REC review/approval during public health emergencies. As currently envisioned in the literature, a system of REC mutual recognition is theoretically possible based on shared procedural REC standards, but raises numerous concerns about perceived inequities and mistrust.

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.

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 …

Ai In The Hands Of Imperfect Users, Kristin M Kostick-Quenet, Sara Gerke

Center for Medical Ethics and Health Policy Staff Publications

As the use of artificial intelligence and machine learning (AI/ML) continues to expand in healthcare, much attention has been given to mitigating bias in algorithms to ensure they are employed fairly and transparently. Less attention has fallen to addressing potential bias among AI/ML's human users or factors that influence user reliance. We argue for a systematic approach to identifying the existence and impacts of user biases while using AI/ML tools and call for the development of embedded interface design features, drawing on insights from decision science and behavioral economics, to nudge users towards more critical and reflective decision making using …

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 …

Psychiatric Polygenic Risk Scores: Child And Adolescent Psychiatrists’ Knowledge, Attitudes, And Experiences, Stacey Pereira, Katrina A Muñoz, Brent J Small, Takahiro Soda, Laura N Torgerson, Clarissa E Sanchez, Jehannine Austin, Eric A Storch, Gabriel Lázaro-Muñoz

Center for Medical Ethics and Health Policy Staff Publications

Psychiatric polygenic risk scores (PRS) have potential utility in psychiatric care and prevention, but there are concerns about their implementation. We surveyed 960 US-based practicing child and adolescent psychiatrists' (CAP) about their experiences, perspectives, and potential uses of psychiatric PRS. While 23% of CAP reported that they had never heard of PRS, 10 % of respondents have had a patient/family bring PRS to them and 4% have generated PRS for patients. Though 25% stated they would request PRS if a patient/caregiver asked, 35% indicated that nothing would prompt them to request PRS. Most respondents (54%) believed psychiatric PRS are currently …

Psychiatric Polygenic Risk Scores: Child And Adolescent Psychiatrists’ Knowledge, Attitudes, And Experiences, Stacey Pereira, Katrina A Muñoz, Brent J Small, Takahiro Soda, Laura N Torgerson, Clarissa E Sanchez, Jehannine Austin, Eric A Storch, Gabriel Lázaro-Muñoz

Center for Medical Ethics and Health Policy Staff Publications

Psychiatric polygenic risk scores (PRS) have potential utility in psychiatric care and prevention, but there are concerns about their implementation. We surveyed 960 US-based practicing child and adolescent psychiatrists' (CAP) about their experiences, perspectives, and potential uses of psychiatric PRS. While 23% of CAP reported that they had never heard of PRS, 10 % of respondents have had a patient/family bring PRS to them and 4% have generated PRS for patients. Though 25% stated they would request PRS if a patient/caregiver asked, 35% indicated that nothing would prompt them to request PRS. Most respondents (54%) believed psychiatric PRS are currently …

Recommendations For Whole Genome Sequencing In Diagnostics For Rare Diseases, Erika Souche, Sergi Beltran, Erwin Brosens, John W Belmont, Magdalena Fossum, Olaf Riess, Christian Gilissen, Amin Ardeshirdavani, Gunnar Houge, Marielle Van Gijn, Jill Clayton-Smith, Matthis Synofzik, Nicole De Leeuw, Zandra C Deans, Yasemin Dincer, Sebastian H Eck, Saskia Van Der Crabben, Meena Balasubramanian, Holm Graessner, Marc Sturm, Helen Firth, Alessandra Ferlini, Rima Nabbout, Elfride De Baere, Thomas Liehr, Milan Macek, Gert Matthijs, Hans Scheffer, Peter Bauer, Helger G Yntema, Marjan M Weiss

Center for Medical Ethics and Health Policy Staff Publications

In 2016, guidelines for diagnostic Next Generation Sequencing (NGS) have been published by EuroGentest in order to assist laboratories in the implementation and accreditation of NGS in a diagnostic setting. These guidelines mainly focused on Whole Exome Sequencing (WES) and targeted (gene panels) sequencing detecting small germline variants (Single Nucleotide Variants (SNVs) and insertions/deletions (indels)). Since then, Whole Genome Sequencing (WGS) has been increasingly introduced in the diagnosis of rare diseases as WGS allows the simultaneous detection of SNVs, Structural Variants (SVs) and other types of variants such as repeat expansions. The use of WGS in diagnostics warrants the re-evaluation …

Integrated Dna Copy Number And Expression Profiling Identifies Igf1r As A Prognostic Biomarker In Pediatric Osteosarcoma, Aaron M Taylor, Jiayi M Sun, Alexander Yu, Horatiu Voicu, Jianhe Shen, Donald A Barkauskas, Timothy J Triche, Julie M Gastier-Foster, Tsz-Kwong Man, Ching C Lau

Center for Medical Ethics and Health Policy Staff Publications

Osteosarcoma is a primary malignant bone tumor arising from bone-forming mesenchymal cells in children and adolescents. Despite efforts to understand the biology of the disease and identify novel therapeutics, the survival of osteosarcoma patients remains dismal. We have concurrently profiled the copy number and gene expression of 226 osteosarcoma samples as part of the Strategic Partnering to Evaluate Cancer Signatures (SPECS) initiative. Our results demonstrate the heterogeneous landscape of osteosarcoma in younger populations by showing the presence of genome-wide copy number abnormalities occurring both recurrently among samples and in a high frequency. Insulin growth factor receptor 1 (IGF1R) is a …

A Novel, De Novo Intronic Variant In Pogz Causes White-Sutton Syndrome, Ashanta Merriweather, David R Murdock, Jill A Rosenfeld, Hongzheng Dai, Shamika Ketkar, Lisa Emrick, Sarah Nicholas, Richard A Lewis, Undiagnosed Diseases Network, Carlos A Bacino, Daryl A Scott, Brendan Lee, Vernon Reid Sutton, Lorraine Potocki, Lindsay C Burrage

Center for Medical Ethics and Health Policy Staff Publications

White-Sutton syndrome (WHSUS), which is caused by heterozygous pathogenic variants in POGZ, is characterized by a spectrum of intellectual disabilities and global developmental delay with or without features of autism spectrum disorder. Additional features may include hypotonia, behavioral abnormalities, ophthalmic abnormalities, hearing loss, sleep apnea, microcephaly, dysmorphic facial features, and rarely, congenital diaphragmatic hernia (CDH). We present a 6-year-old female with features of WHSUS, including CDH, but with nondiagnostic clinical trio exome sequencing. Exome sequencing reanalysis revealed a heterozygous, de novo, intronic variant in POGZ (NM_015100.3:c.2546-20T>A). RNA sequencing revealed that this intronic variant leads to skipping of exon 18. …

A Mixed-Methods Protocol To Develop And Validate A Stewardship Maturity Matrix For Human Genomic Data In The Cloud, Vasiliki Rahimzadeh, Ge Peng, Mildred Cho

Center for Medical Ethics and Health Policy Staff Publications

This article describes a mixed-methods protocol to develop and test the implementation of a stewardship maturity matrix (SMM) for repositories which govern access to human genomic data in the cloud. It is anticipated that the cloud will host most human genomic and related health datasets generated as part of publicly funded research in the coming years. However, repository managers lack practical tools for identifying what stewardship outcomes matter most to key stakeholders as well as how to track progress on their stewardship goals over time. In this article we describe a protocol that combines Delphi survey methods with SMM modeling …

The Ratio Method: Addressing Complex Tort Liability In The Fourth Industrial Revolution, Harrison C. Margolin, Grant H. Frazier

St. Mary's Law Journal

Emerging technologies of the Fourth Industrial Revolution show fundamental promise for improving productivity and quality of life, though their misuse may also cause significant social disruption. For example, while artificial intelligence will be used to accelerate society’s processes, it may also displace millions of workers and arm cybercriminals with increasingly powerful hacking capabilities. Similarly, human gene editing shows promise for curing numerous diseases, but also raises significant concerns about adverse health consequences related to the corruption of human and pathogenic genomes.

In most instances, only specialists understand the growing intricacies of these novel technologies. As the complexity and speed of …

Eugenics In The 21st Century, Jessica Linn Chin

Dissertations, Theses, and Capstone Projects

Eugenics is the science of enhancing the human population through the management of breeding and hereditary traits. This thesis explores the history of eugenics and shows how eugenic practices continue in the 21^st century with advancements in technology and positive eugenic goals that can result in adverse effects on the human body and society. When Sir Francis Galton coined the term eugenics in 1883, he intended to improve British society with the use of positive eugenics. Galton used positive eugenics to encourage people with good mental and physical qualities to produce more children. He avoided negative eugenics, which involved …

Designer Babies: A Paired Analysis Of The Technological Advances And Ethical Implications Of Genetic Selection, Alexandra Schmerge 18

Honor Scholar Theses

No abstract provided.

Biosocial Criminology Versus The Constitution, Karen E. Balter

Regis University Student Publications (comprehensive collection)

The continually emerging field of biosocial criminology provides a basis for productively merging biology with sociological reasonings for criminal behavior. Mainstream research in criminology focuses on environmental factors as the sole reason individuals exhibit antisocial behavior patterns and may ultimately commit crimes. Criminological research has travelled in this direction for decades. The current climate within this community subscribes heavily to the notion that biology has very little to do with why people behave the way they do, and if it did, government control would be the norm. The nature of biocriminology opens a door through which constitutional issues may enter. …

Germ-Line Gene Editing And Congressional Reaction In Context: Learning From Almost 50 Years Of Congressional Reactions To Biomedical Breakthroughs, Russell A. Spivak, J.D., I. Glenn Cohen, J.D., Eli Y. Adashi, M.D., M.S.

Journal of Law and Health

On December 18, 2015, President Obama signed into law a policy rider forestalling the therapeutic modification of the human germ line. The rider, motivated by the science’s potential unethical ends, is only the most recent instance in which the legislature cut short the ongoing national conversation on the acceptability of a developing science. This essay offers historical perspective on what bills were proposed and passed surrounding four other then-developing scientific breakthroughs—Recombinant DNA, in vitro fertilization, Cloning, Stem Cells—to better analyze how Congress is, and should, regulate this exciting and promising science.

Genomic Contraindications For Heart Transplantation., Danton S. Char, Gabriel Lázaro-Muñoz, Aliessa Barnes, David Magnus, Michael J. Deem, John Lantos

Manuscripts, Articles, Book Chapters and Other Papers

Genome sequencing raises new ethical challenges. Decoding the genome produces new forms of diagnostic and prognostic information; however, the information is often difficult to interpret. The connection between most genetic variants and their phenotypic manifestations is not understood. This scenario is particularly true for disorders that are not associated with an autosomal genetic variant. The analytic uncertainty is compounded by moral uncertainty about how, exactly, the results of genomic testing should influence clinical decisions. In this Ethics Rounds, we present a case in which genomic findings seemed to play a role in deciding whether a patient was to be listed …

Newborn Sequencing In Genomic Medicine And Public Health., Jonathan S. Berg, Pankaj B. Agrawal, Donald B. Bailey, Alan H. Beggs, Steven E. Brenner, Amy M. Brower, Julie A. Cakici, Ozge Ceyhan-Birsoy, Kee Chan, Flavia Chen, Robert J. Currier, Dmitry Dukhovny, Robert C. Green, Julie Harris-Wai, Ingrid A. Holm, Brenda Iglesias, Galen Joseph, Stephen F. Kingsmore, Barbara A. Koenig, Pui-Yan Kwok, John Lantos, J Steven Leeder, Megan A. Lewis, Amy L. Mcguire, Laura V. Milko, Sean D. Mooney, Richard B. Parad, Stacey Pereira, Josh E. Petrikin, Bradford C. Powell, Cynthia M. Powell, Jennifer M. Puck, Heidi L. Rehm, Neil Risch, Myra Roche, Joseph T. Shieh, Narayanan Veeraraghavan, Michael S. Watson, Laurel K. Willig, Timothy W. Yu, Tiina Urv, Anastasia L. Wise

Manuscripts, Articles, Book Chapters and Other Papers

The rapid development of genomic sequencing technologies has decreased the cost of genetic analysis to the extent that it seems plausible that genome-scale sequencing could have widespread availability in pediatric care. Genomic sequencing provides a powerful diagnostic modality for patients who manifest symptoms of monogenic disease and an opportunity to detect health conditions before their development. However, many technical, clinical, ethical, and societal challenges should be addressed before such technology is widely deployed in pediatric practice. This article provides an overview of the Newborn Sequencing in Genomic Medicine and Public Health Consortium, which is investigating the application of genome-scale sequencing …

Surrogate Pregnancy After Prenatal Diagnosis Of Spina Bifida., Lynnette J. Mazur, Mary Kay Kisthardt, Helen H. Kim, Laura M. Rosas, John Lantos

Manuscripts, Articles, Book Chapters and Other Papers

Some pregnancies today involve infertile individuals or couples who contract with a fertile woman to carry a pregnancy for them. The woman who carries the pregnancy is referred to as a "gestational carrier." The use of such arrangements is increasing. Most of the time, these arrangements play out as planned; sometimes, however, problems arise. This article discusses a case in which a fetal diagnosis of spina bifida led the infertile couple to request that the gestational carrier terminate the pregnancy, and the gestational carrier did not wish to do so. Experts in the medical and legal issues surrounding surrogacy discuss …

Introduction To Bioethics Special Supplement V: Ethical Issues In Genomic Testing Of Children., John D. Lantos

Manuscripts, Articles, Book Chapters and Other Papers

Next-generation genome sequencing of children is one of the most promising and most challenging new technologies in pediatrics. On the one hand, it offers the hope that we will be able to diagnose rare conditions that were previously impossible to diagnose, which, in turn, might lead to new treatments. On the other hand, the technology for sequencing presents daunting problems of interpretation. It is problematic to conduct the research necessary to characterize the pathogenicity of those variants at the same time that we are using them to guide the clinical care of children who have complex medical problems. It is …

Whole-Genome Sequencing And Disability In The Nicu: Exploring Practical And Ethical Challenges., Michael J. Deem

Manuscripts, Articles, Book Chapters and Other Papers

Clinical whole-genome sequencing (WGS) promises to deliver faster diagnoses and lead to better management of care in the NICU. However,several disability rights advocates have expressed concern that clinical use of genetic technologies may reinforce and perpetuate stigmatization of and discrimination against disabled persons in medical and social contexts. There is growing need, then, for clinicians and bioethicists to consider how the clinical use of WGS in the newborn period might exacerbate such harms to persons with disabilities. This article explores ways to extend these concerns to clinical WGS in neonatal care. By considering these perspectives during the early phases of …

Future Oversight Of Recombinant Dna Research: Recommendations Of An Institute Of Medicine Committee, Lawrence O. Gostin, Bruce M. Altevogt, Andrew M. Pope

Georgetown Law Faculty Publications and Other Works

The National Institutes of Health (NIH) established the Recombinant DNA Advisory Committee (RAC) in 1974 in response to public concerns about the safety of manipulating genetic material through recombinant DNA. The accumulation of 40 years of experience with gene transfer research has led to a better understanding of the risks. Yet, as gene transfer research has matured, the complexity of the overall regulatory environment has remained. Gene transfer research continues to be subjected to multiple layers of review: the Food and Drug Administration (FDA), institutional review boards, institutional biosafety committees, and the RAC. It is within the context of overlapping …

The Duty To Rescue In Genomic Research, Michael Ulrich

Student Articles and Papers

No abstract provided.

Manipulating Fate: Medical Innovations, Ethical Implications, Theatrical Illuminations, Karen H. Rothenberg, Lynn W. Bush

Faculty Scholarship

Transformative innovations in medicine and their ethical complexities create frequent confusion and misinterpretation that color the imagination. Placed in historical context, theatre provides a framework to reflect upon how the ethical, legal, and social implications of emerging technologies evolve over time and how attempts to control fate through medical science have shaped -- and been shaped by -- personal and professional relationships. The drama of these human interactions is powerful and has the potential to generate fear, create hope, transform identity, and inspire empathy -- a vivid source to observe the complex implications of translating research into clinical practice through …

Insight Into Animal Cloning And The Food Chain: A Qualitative Examination Of Key Opinion Leaders And A Cross Section Of The Irish Public., Cathal Murphy

Masters

The ability to clone elite breeding animals, aimed at addressing the needs of modern food production, had been earmarked as a possibility for the agricultural sector since the birth of Dolly the sheep in 1996. A ruling by the Food and Drug Administration in the United States in 2008 that permits under-license, the commercial cloning of agricultural animals has seen this possibility realised. No such ruling exists here in Europe, but the FDA policy not to label cloned-derived products, and a history of wariness to food biotechnology in Europe may expedite this debate. With the plethora of issues that cloning …

Teratology Primer-2nd Edition (7/9/2010), Sura Alwan, Steven B. Bleyl, Robert L. Brent, Christina D. Chambers, George P. Daston, Elaine M. Faustman, Richard H. Finnell, F. Clarke Fraser, Jan M. Freidman, Adriane Fugh-Berman, John M. Graham, Jr., Barbara F. Hales, Deborah K. Hansen, Lewis B. Holmes, Ronald D. Hood, Robert J. Kavlock, Thomas B. Knudsen, Joseph Lary, Donald R. Mattison, Richard K. Miller, James L. Mills, Janine E. Polifka, Sonja A. Rasmussen, Bernard Robaire, John M. Rogers, Gary C. Schoenwolf, Anthony R. Scialli, Gary M. Shaw, Amar V. Singh, William Slikker, Jr., Ann P. Streissguth, Melissa S. Tassinari, Janet Uriu-Adams, Charles V. Vorhees, Elora J. Weringer

Department of Pediatrics Faculty Papers

Foreword:

What is Teratology?

“What a piece of work is an embryo!” as Hamlet might have said. “In form and moving how express and admirable! In complexity how infinite!” It starts as a single cell, which by repeated divisions gives rise to many genetically identical cells. These cells receive signals from their surroundings and from one another as to where they are in this ball of cells —front or back, right or left, headwards or tailwards, and what they are destined to become. Each cell commits itself to being one of many types; the cells migrate, combine into tissues, or …

Update - January 2007, Loma Linda University Center For Christian Bioethics

Update

In this issue:

-- Stem Cells, Embryos, and Ethics: Is There a Way Forward?
-- Editorial
-- 2006 Contributor's Convocation "Present Day Health Care: Collaborate or Close the Door"