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  1.  4
    Consideration and Disclosure of Group Risks in Genomics and Other Data-Centric Research: Does the Common Rule Need Revision?Carolyn Riley Chapman, Gwendolyn P. Quinn, Heini M. Natri, Courtney Berrios, Patrick Dwyer, Kellie Owens, Síofra Heraty & Arthur L. Caplan - forthcoming - American Journal of Bioethics:1-14.
    Harms and risks to groups and third-parties can be significant in the context of research, particularly in data-centric studies involving genomic, artificial intelligence, and/or machine learning technologies. This article explores whether and how United States federal regulations should be adapted to better align with current ethical thinking and protect group interests. Three aspects of the Common Rule deserve attention and reconsideration with respect to group interests: institutional review board (IRB) assessment of the risks/benefits of research; disclosure requirements in the informed (...)
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    Studying Vulnerable Populations Through an Epigenetics Lens: Proceed with Caution.Katie Saulnier, Alison Berner, Stamatina Liosi, Brian Earp, Courtney Berrios, Stephanie O. M. Dyke, Charles Dupras & Yann Joly - 2022 - Canadian Journal of Bioethics / Revue canadienne de bioéthique 5 (1).
    Epigenetics – the study of mechanisms that influence and modify gene expression – is providing unique insights into how an individual’s social and physical environment impact the body at a molecular level, particularly in populations that experience stigmatization and trauma. Researchers are employing epigenetic studies to illuminate how epigenetic modifications lead to imbalances in health outcomes for vulnerable populations. However, the investigation of factors that render a population epigenetically vulnerable present particular ethical and methodological challenges. Here we are concerned with (...)
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    Addressing the Burdens That Newborn Screening Imposes on Underserved Communities.Meghan E. Strenk, Courtney Berrios & Jeremy R. Garrett - 2023 - American Journal of Bioethics 23 (7):79-82.
    Newborn screening (NBS) began in the 1960s by testing all newborns for a single condition—phenylketonuria, or PKU—which, when identified and treated early, significantly reduces morbidity. Over the...
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    Comparing Attitudes About Genomic Privacy and Data Sharing in Adolescents and Parents of Children Enrolled in a Genomic Research Repository.Courtney Berrios, Shelby Neal, Tricia Zion & Tomi Pastinen - forthcoming - AJOB Empirical Bioethics.
    Sharing of genomic data aims to make efficient use of limited resources, which may be particularly valuable in rare disease research. Adult research participants and parents of pediatric research p...
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