Ethical, Legal, and Social Issues (ELSI) of Responsible Data Sharing Involving Children in Genomics: A Systematic Literature Review of Reasons

Vasiliki Rahimzadeha Center for Biomedical Ethics, Stanford University, Stanford, California, USACorrespondence[email protected]

https://orcid.org/0000-0003-3537-7601 View further author information

Bartha Maria Knoppersb Human Genetics, McGill University, Montreal, Quebec, Canada

https://orcid.org/0000-0001-7004-2722 View further author information

Gillian Bartlettc Family Medicine, McGill University, Montreal, Quebec, Canada

https://orcid.org/0000-0001-6297-9240 View further author information

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Carolyn Petersen & Andrew D. Boyd. 2024. Comprehensive Precision Medicine. Comprehensive Precision Medicine 334 350 .

María C. Sánchez, Juan Carlos Hernández Clemente & Fernando J. García López. (2023) Public and Patients’ Perspectives Towards Data and Sample Sharing for Research: An Overview of Empirical Findings. Journal of Empirical Research on Human Research Ethics 18:5, pages 319-345.
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Dimitri Patrinos, Bartha Maria Knoppers, David P. Laplante, Noriyeh Rahbari & Ashley Wazana. (2022) Sharing and Safeguarding Pediatric Data. Frontiers in Genetics 13.
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Ana S.A. Cohen, Emily G. Farrow, Ahmed T. Abdelmoity, Joseph T. Alaimo, Shivarajan M. Amudhavalli, John T. Anderson, Lalit Bansal, Lauren Bartik, Primo Baybayan, Bradley Belden, Courtney D. Berrios, Rebecca L. Biswell, Pawel Buczkowicz, Orion Buske, Shreyasee Chakraborty, Warren A. Cheung, Keith A. Coffman, Ashley M. Cooper, Laura A. Cross, Tom Curran, Thuy Tien T. Dang, Mary M. Elfrink, Kendra L. Engleman, Erin D. Fecske, Cynthia Fieser, Keely Fitzgerald, Emily A. Fleming, Randi N. Gadea, Jennifer L. Gannon, Rose N. Gelineau-Morel, Margaret Gibson, Jeffrey Goldstein, Elin Grundberg, Kelsee Halpin, Brian S. Harvey, Bryce A. Heese, Wendy Hein, Suzanne M. Herd, Susan S. Hughes, Mohammed Ilyas, Jill Jacobson, Janda L. Jenkins, Shao Jiang, Jeffrey J. Johnston, Kathryn Keeler, Jonas Korlach, Jennifer Kussmann, Christine Lambert, Caitlin Lawson, Jean-Baptiste Le Pichon, James Steven Leeder, Vicki C. Little, Daniel A. Louiselle, Michael Lypka, Brittany D. McDonald, Neil Miller, Ann Modrcin, Annapoorna Nair, Shelby H. Neal, Christopher M. Oermann, Donna M. Pacicca, Kailash Pawar, Nyshele L. Posey, Nigel Price, Laura M.B. Puckett, Julio F. Quezada, Nikita Raje, William J. Rowell, Eric T. Rush, Venkatesh Sampath, Carol J. Saunders, Caitlin Schwager, Richard M. Schwend, Elizabeth Shaffer, Craig Smail, Sarah Soden, Meghan E. Strenk, Bonnie R. Sullivan, Brooke R. Sweeney, Jade B. Tam-Williams, Adam M. Walter, Holly Welsh, Aaron M. Wenger, Laurel K. Willig, Yun Yan, Scott T. Younger, Dihong Zhou, Tricia N. Zion, Isabelle Thiffault & Tomi Pastinen. (2022) Genomic answers for children: Dynamic analyses of >1000 pediatric rare disease genomes. Genetics in Medicine 24:6, pages 1336-1348.
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Vasiliki Rahimzadeh, Gillian Bartlett & Bartha Maria Knoppers. (2021) A policy Delphi study to validate the key implications of data sharing (KIDS) framework for pediatric genomics in Canada. BMC Medical Ethics 22:1.
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Michael J. S. Beauvais, Karine Sénécal, Conrad V. Fernandez, Daniel Sinnett, Vasiliki Rahimzadeh & Bartha Maria Knoppers. 2021. The Hereditary Basis of Childhood Cancer. The Hereditary Basis of Childhood Cancer 387 414 .

Ethical, Legal, and Social Issues (ELSI) of Responsible Data Sharing Involving Children in Genomics: A Systematic Literature Review of Reasons

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Ethical, Legal, and Social Issues (ELSI) of Responsible Data Sharing Involving Children in Genomics: A Systematic Literature Review of Reasons

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