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  1. Whose Odyssey Is It? Family‐Centered Care in the Genomic Era.Jeffrey P. Brosco - 2018 - Hastings Center Report 48 (S2):20-22.
    Despite a century of progress in medical knowledge, many diagnostic odysseys end in disappointment, especially when the child has a developmental disorder. In cases of autism and intellectual disability, relatively few children receive a specific diagnosis, and virtually none of those diagnoses lead to a specific medical treatment. Whole‐genome or ‐exome sequencing offers a quantum leap in the diagnostic odyssey, in that we will always learn something from sequencing—sometimes much more than families bargained for, as discussed elsewhere in this special (...)
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  • The challenge of recruiting diverse populations into health research: an embedded social science perspective.Simon M. Outram, Sara L. Ackerman, Matthew Norstad & Barbara Koenig - 2022 - New Genetics and Society 41 (3):216-226.
    Addressing health disparities has become a central remit for conducting health research. In the following paper, we explore the conceptual and methodological challenges posed by the call to recruit medically underserved populations. This exploration of challenges is undertaken from the perspective of social science researchers embedded in a large clinical genomics research study. We suggest that these challenges are found in respect to the development of recruiting strategies, analysis of the data in respect to understanding and interpreting the experiences of (...)
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  • Inclusion: The Politics of Difference in Medical Research.Steven Epstein - 2008 - International Journal of Feminist Approaches to Bioethics 1 (2):174-178.
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  • The Therapeutic Odyssey: Positioning Genomic Sequencing in the Search for a Child’s Best Possible Life.Janet Elizabeth Childerhose, Carla Rich, Kelly M. East, Whitley V. Kelley, Shirley Simmons, Candice R. Finnila, Kevin Bowling, Michelle Amaral, Susan M. Hiatt, Michelle Thompson, David E. Gray, James M. J. Lawlor, Richard M. Myers, Gregory S. Barsh, Edward J. Lose, Martina E. Bebin, Greg M. Cooper & Kyle Bertram Brothers - 2021 - AJOB Empirical Bioethics 12 (3):179-189.
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