Genomics Research with Undiagnosed Children: Ethical Challenges at the Boundaries of Research and Clinical Care

Young, Jennifer L.; Tang, Chad; Mintz, Kevin; Lucas-Griffin, Sawyer; Maghiro, Audrey Stephannie; Acosta, Maria T.; Adam, Margaret P; Adams, David R.; Alvarez, Raquel L.; Alvey, Justin; Amendola, Laura M.; Andrews, Ashley; Ashley, Euan A.; Bacino, Carlos A.; Bademci, Güney; Balasubramanyam, Ashok; Baldridge, Dustin; Bale, Jim; Bamshad, Michael J.; Barbouth, Deborah; Bayrak-Toydemir, Pınar; Beck, Anita E.; Beggs, Alan H.; Behrens, Edward; Bejerano, Gill; Bellen, Hugo J.; Bennett, Jimmy; Berg‐Rood, Beverly; Bernstein, Jonathan A.; Berry, Gerard T.; Bican, Anna; Bivona, Stephanie; Blue, Elizabeth; Bohnsack, John Peyton; Bonner, Devon; Botto, Lorenzo D.; Boyd, Brenna; Briere, Lauren C.; Brown, Gabrielle; Burke, Elizabeth; Burrage, Lindsay C.; Butte, Manish J.; Byers, Peter H.; Byrd, William E.; Carey, John C.; Carrasquillo, Olveen; Cassini, Thomas; Chang, Ta Chen; Chanprasert, Sirisak; Chao, Hsiao‐Tuan; Chinn, Iván K.; Clark, Gary D.; Coakley, Terra R.; Cobban, Laurel A.; Cogan, Joy D.; Coggins, Matthew; Cole, F. Sessions; Colley, Heather A.; Cope, Heidi; Corona, Rosario I.; Craigen, William J.; Crouse, Andrew B.; Cunningham, Michael L.; D’Souza, Precilla; Dai, Hongzheng; Dasari, Surendra; Davis, Joie; Dayal, Jyoti G.; Dell’Angelica, Esteban C.; Dickson, Patricia I.; Dipple, Katrina M.; Doherty, Daniel; Dorrani, Naghmeh; Doss, Argenia L.; Douine, Emilie D.; Earl, Dawn; Eckstein, David J.; Emrick, Lisa; Eng, Christine M.; Falk, Marni J.; Fieg, Elizabeth L.; Fisher, Paul; Fogel, Brent L.; Forghani, Irman; Gahl, William A.; Glass, Ian A.; Gochuico, Bernadette; Goddard, Pagé C.; Godfrey, Rena A.; Golden‐Grant, Katie; Grajewski, Alana L.; Hadley, Don; Hahn, Sihoun; Halley, Meghan; Hamid, Rizwan; Hassey, Kelly; Hayes, Nichole; High, Frances A.; Hing, Anne V.; Hisama, Fuki M.; Holm, Ingrid A.; Hom, Jason; Horike‐Pyne, Martha; Huang, Alden; Hutchison, Sarah; Introne, Wendy J.; Isasi, Rosario; Izumi, Kosuke; Jarvik, Gail P.; Jarvik, Jeffrey G.; Jayadev, Suman; Jean‐Marie, Orpa; Jobanputra, Vaidehi; Ketkar, Shamika; Kiley, Dana; Kilich, Gonench; Kobren, Shilpa Nadimpalli; Kohane, Isaac S.; Kohler, Jennefer N.; Korrick, Susan A.; Kozuira, Mary; Krakow, Deborah; Krasnewich, Donna M.; Kravets, Elijah; Lalani, Seema R.; Lam, Byron L.; Lam, Christina; Lanpher, Brendan C.; Lanza, Ian R.; LeBlanc, Kimberly; Lee, Brendan; Levitt, Roy C.; Lewis, Richard A.; Liu, Pengfei; Liu, Xue Zhong; Longo, Nicola; Loo, Sandra K.; Loscalzo, Joseph; Maas, Richard L.; Macnamara, Ellen; MacRae, Calum A.; Maduro, Valerie V.; Maghiro, AudreyStephannie; Mahoney, Rachel; Malicdan, May Christine V.; Mamounas, Laura A.; Manolio, Teri A.; Mao, Rong; Maravilla, Kenneth R.; Marom, Ronit; Marth, Gábor; Martin, Beth A.; Martin, Martin G.; Martínez‐Agosto, Julian A.; Marwaha, Shruti; McCauley, Jacob L.; McConkie‐Rosell, Allyn; McCray, Alexa T.; McGee, Elisabeth; Mefford, Heather C; Merritt, J. Lawrence; Might, Matthew; Mirzaa, Ghayda; Morava, Éva; Moretti, Paolo; Mulvihill, John J.; Nakano‐Okuno, Mariko; Nelson, Stanley F.; Newman, John H.; Nickerson, Deborah A.; Nieves‐Rodriguez, Shirley; Novacic, Donna; Oglesbee, Devin; Orengo, James P.; Pace, Laura A.; Pak, Stephen C.; Pallais, J. Carl; Palmer, Christina G.S.; Papp, Jeanette C.; Parker, Neil H.; Phillips, John A.; Posey, Jennifer E.; Potocki, Lorraine; Swerdzewski, Barbara N. Pusey; Quinlan, Aaron R.; Rao, Deepak A.; Raper, Anna; Raskind, Wendy H.; Renteria, Genecee; Reuter, Chloe M.; Rives, Lynette; Robertson, Amy K.; Rodan, Lance H.; Rosenfeld, Jill A.; Rosenwasser, Natalie; Rossignol, Francis; Ruzhnikov, Maura; Sacco, Ralph L.; Sampson, Jacinda B.; Saporta, Mario; Schaechter, Judy; Schedl, Timothy; Schoch, Kelly; Scott, Daryl A.; Scott, Colin; Seto, Elaine S.; Shashi, Vandana; Shin, Jimann; Silverman, Edwin K.; Sinsheimer, Janet S.; Sisco, Kathy; Smith, Edward C.; Smith, Kevin S.; Solnica‐Krezel, Lilianna; Solomon, Ben; Spillmann, Rebecca C.; Stoler, Joan M.; Sullivan, Kathleen E.; Sullivan, Jennifer; Sun, Angela; Sutton, Shirley; Sweetser, David A.; Sybert, Virginia P.; Tabor, Holly K.; Tan, Queenie K.‐G.; Tan, Amelia L.M.; Tarakad, Arjun; Tekin, Mustafa; Telischi, Fred; Thorson, Willa; Tifft, Cynthia J.; Toro, Camilo; Tran, Alyssa A.; Ungar, Rachel A.; Urv, Tiina K.; Vanderver, Adeline; Velinder, Matt; Viskochil, Dave; Vogel, Tiphanie P.; Wahl, Colleen E.; Walker, Melissa; Wallace, Stephanie E; Walley, Nicole M.; Wambach, Jennifer A.; Wan, Jijun; Wang, Lee-kai; Wangler, Michael F.; Ward, Patricia A.; Wegner, Daniel; Hubshman, Monika Weisz; Wener, Mark H.; Wenger, Tara L.; Westerfield, Monte; Wheeler, Matthew T.; Whitlock, Jordan; Wolfe, Lynne A.; Worley, Kim C.; Xiao, Changrui; Yamamoto, Shinya; Yang, John Jeongseok; Zhang, Zhe; Züchner, Stephan

doi:10.1016/j.jpeds.2023.113537

The Journal of Pediatrics

2023

DOI: 10.1016/j.jpeds.2023.113537

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Genomics Research with Undiagnosed Children: Ethical Challenges at the Boundaries of Research and Clinical Care

Jennifer L. Young¹,

Chad Tang²,

Kevin Mintz³

et al.

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A Just Genomics Needs an ELSI of Translation

Halley,

Olson,

Ashley

et al. 2024

Hastings Center Report

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The rapid advances in genomics over the last decade have come to fruition amid intense public discussions of justice in medicine and health care. While much emphasis has been placed on increasing diversity in genomics research participation, an overly narrow focus on recruitment eschews recognition of the disparities in health care that will ultimately shape access to the benefits of genomic medicine. In this essay, we suggest that achieving a just genomics, both now and in the future, requires an explicit ELSI of translation—normative and pragmatic scholarship that embraces the interconnectedness of research and clinical care and centers the obligations of researchers, institutions, and funders to mitigate inequities throughout the translational pipeline. We propose core principles to guide an ELSI of translation and to ensure that this work balances the value of the generalizable knowledge that genomics research generates and the value of the individuals and communities who make this research possible.

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A Just Genomics Needs an ELSI of Translation

Halley,

Olson,

Ashley

et al. 2024

Hastings Center Report

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Blurred Boundaries: Toward an Expanded Ethics of Research and Clinical Care

Halley

Olson

2023

The American Journal of Bioethics

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Genomics Research with Undiagnosed Children: Ethical Challenges at the Boundaries of Research and Clinical Care

Cited by 2 publications

References 42 publications

A Just Genomics Needs an ELSI of Translation

A Just Genomics Needs an ELSI of Translation

Blurred Boundaries: Toward an Expanded Ethics of Research and Clinical Care

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