9 found
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  1.  53
    Genomic Contextualism: Shifting the Rhetoric of Genetic Exceptionalism.John A. Lynch, Aaron J. Goldenberg, Kyle B. Brothers & Nanibaa' A. Garrison - 2019 - American Journal of Bioethics 19 (1):51-63.
    As genomic science has evolved, so have policy and practice debates about how to describe and evaluate the ways in which genomic information is treated for individuals, institutions, and society. The term genetic exceptionalism, describing the concept that genetic information is special or unique, and specifically different from other kinds of medical information, has been utilized widely, but often counterproductively in these debates. We offer genomic contextualism as a new term to frame the characteristics of genomic science in the debates. (...)
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  2.  24
    Rare Disease, Advocacy and Justice: Intersecting Disparities in Research and Clinical Care.Meghan C. Halley, Colin M. E. Halverson, Holly K. Tabor & Aaron J. Goldenberg - 2023 - American Journal of Bioethics 23 (7):17-26.
    Rare genetic diseases collectively impact millions of individuals in the United States. These patients and their families share many challenges including delayed diagnosis, lack of knowledgeable providers, and limited economic incentives to develop new therapies for small patient groups. As such, rare disease patients and families often must rely on advocacy, including both self-advocacy to access clinical care and public advocacy to advance research. However, these demands raise serious concerns for equity, as both care and research for a given disease (...)
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  3.  23
    A Belmont Reboot: Building a Normative Foundation for Human Research in the 21st Century.Kyle B. Brothers, Suzanne M. Rivera, R. Jean Cadigan, Richard R. Sharp & Aaron J. Goldenberg - 2019 - Journal of Law, Medicine and Ethics 47 (1):165-172.
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  4.  50
    IRB practices and policies regarding the secondary research use of biospecimens.Aaron J. Goldenberg, Karen J. Maschke, Steven Joffe, Jeffrey R. Botkin, Erin Rothwell, Thomas H. Murray, Rebecca Anderson, Nicole Deming, Beth F. Rosenthal & Suzanne M. Rivera - 2015 - BMC Medical Ethics 16 (1):32.
    As sharing and secondary research use of biospecimens increases, IRBs and researchers face the challenge of protecting and respecting donors without comprehensive regulations addressing the human subject protection issues posed by biobanking. Variation in IRB biobanking policies about these issues has not been well documented.
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  5.  18
    Online Pediatric Research: Addressing Consent, Assent, and Parental Permission.Kyle B. Brothers, Ellen Wright Clayton & Aaron J. Goldenberg - 2020 - Journal of Law, Medicine and Ethics 48 (S1):129-137.
    This article provides practical guidance for researchers who wish to enroll and collect data from pediatric research participants through online and mobile platforms, with a focus on the involvement of both children and their parents in the decision to participate.
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  6.  47
    Modernizing Research Regulations Is Not Enough: It's Time to Think Outside the Regulatory Box.Suzanne M. Rivera, Kyle B. Brothers, R. Jean Cadigan, Heather L. Harrell, Mark A. Rothstein, Richard R. Sharp & Aaron J. Goldenberg - 2017 - American Journal of Bioethics 17 (7):1-3.
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  7.  8
    Moving to Equity in the All of Us Research Program.Kadija Ferryman, Aaron J. Goldenberg & Maya Sabatello - 2024 - American Journal of Bioethics 24 (3):115-117.
    In the article, “Precision Medicine for Whom? Public Health Outputs from “Genomics England” and “All of Us” to Make Up for Upstream and Downstream Exclusion,” Galasso focuses on how marginalized pe...
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  8.  24
    “If It’s Ethical During a Pandemic…”: Lessons from COVID-19 for Post-Pandemic Biobanking.Kyle B. Brothers, Aaron J. Goldenberg & R. Jean Cadigan - 2021 - American Journal of Bioethics 21 (12):34-36.
    The COVID-19 pandemic has resulted in widespread disruption of the typical way of doing things. In nearly every industry, responses to the pandemic have brought about departures from standard opera...
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  9.  24
    Return of Results from Research Using Newborn Screening Dried Blood Samples.Michelle Huckaby Lewis & Aaron J. Goldenberg - 2015 - Journal of Law, Medicine and Ethics 43 (3):559-568.
    There may be compelling reasons to return to parents a limited subset of results from research conducted using residual newborn screening dried blood samples. This article explores the circumstances under which research results might be returned, as well as the mechanisms by which state newborn screening programs might facilitate the return of research results. The scope of any responsibility to return results of research conducted using DBS should be assessed in light of the potential impact on the primary mission of (...)
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