11 found
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Aaron J. Goldenberg [6]Aaron Goldenberg [5]
  1.  18
    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.  25
    Sequencing Newborns: A Call for Nuanced Use of Genomic Technologies.Josephine Johnston, John D. Lantos, Aaron Goldenberg, Flavia Chen, Erik Parens & Barbara A. Koenig - 2018 - Hastings Center Report 48 (S2):S2-S6.
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  3.  22
    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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  4.  6
    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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  5.  24
    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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  6.  6
    Misplaced Trust: Building Research Relationships in the Age of Biorepository Networks.Aaron Goldenberg & Kyle Brothers - 2018 - American Journal of Bioethics 18 (4):21-23.
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  7.  3
    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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  8.  23
    Sequencing Newborns: A Call for Nuanced Use of Genomic Technologies.Josephine Johnston, John D. Lantos, Aaron Goldenberg, Flavia Chen, Erik Parens, Barbara A. Koenig, Members of the Nsight Ethics & Policy Advisory Board - forthcoming - Zygon.
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  9.  3
    Public Involvement in the Governance of Population-Level Biomedical Research: Unresolved Questions and Future Directions.Sonja Erikainen, Phoebe Friesen, Leah Rand, Karin Jongsma, Michael Dunn, Annie Sorbie, Matthew McCoy, Jessica Bell, Michael Burgess, Haidan Chen, Vicky Chico, Sarah Cunningham-Burley, Julie Darbyshire, Rebecca Dawson, Andrew Evans, Nick Fahy, Teresa Finlay, Lucy Frith, Aaron Goldenberg, Lisa Hinton, Nils Hoppe, Nigel Hughes, Barbara Koenig, Sapfo Lignou, Michelle McGowan, Michael Parker, Barbara Prainsack, Mahsa Shabani, Ciara Staunton, Rachel Thompson, Kinga Varnai, Effy Vayena, Oli Williams, Max Williamson, Sarah Chan & Mark Sheehan - forthcoming - Journal of Medical Ethics:medethics-2020-106530.
    Population-level biomedical research offers new opportunities to improve population health, but also raises new challenges to traditional systems of research governance and ethical oversight. Partly in response to these challenges, various models of public involvement in research are being introduced. Yet, the ways in which public involvement should meet governance challenges are not well understood. We conducted a qualitative study with 36 experts and stakeholders using the World Café method to identify key governance challenges and explore how public involvement can (...)
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  10.  6
    Genetic Diagnostic, Pedigree, and Screening Research.Eric T. Juengst & Aaron Goldenberg - 2008 - In Ezekiel J. Emanuel (ed.), The Oxford Textbook of Clinical Research Ethics. Oxford University Press. pp. 298.
  11.  12
    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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