14 found
Order:
Disambiguations
Aaron J. Goldenberg [9]Aaron Goldenberg [5]
  1.  48
    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. (...)
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark   29 citations  
  2.  20
    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 (...)
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   11 citations  
  3.  29
    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 - 2021 - Journal of Medical Ethics 47 (7):522-525.
    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 (...)
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   6 citations  
  4.  20
    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.
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   6 citations  
  5.  44
    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.
    Direct download (6 more)  
     
    Export citation  
     
    Bookmark   8 citations  
  6.  32
    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):2-6.
    Many scientists and doctors hope that affordable genome sequencing will lead to more personalized medical care and improve public health in ways that will benefit children, families, and society more broadly. One hope in particular is that all newborns could be sequenced at birth, thereby setting the stage for a lifetime of medical care and self‐directed preventive actions tailored to each child's genome. Indeed, commentators often suggest that universal genome sequencing is inevitable. Such optimism can come with the presumption that (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   5 citations  
  7.  12
    Misplaced Trust: Building Research Relationships in the Age of Biorepository Networks.Aaron Goldenberg & Kyle Brothers - 2018 - American Journal of Bioethics 18 (4):21-23.
    In this issue of the American Journal of Bioethics, Kraft and colleagues (2018) provide important insights into the role trust plays in donor's decisions to contribute data and samples to local bio...
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   4 citations  
  8.  13
    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.
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   2 citations  
  9.  40
    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.
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark   3 citations  
  10.  39
    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.
    Direct download  
     
    Export citation  
     
    Bookmark   2 citations  
  11.  7
    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...
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark  
  12.  20
    “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...
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark  
  13.  11
    Genetic diagnostic, pedigree, and screening research.Eric T. Juengst & Aaron Goldenberg - 2008 - In Ezekiel J. Emanuel (ed.), The Oxford textbook of clinical research ethics. New York: Oxford University Press. pp. 298.
    Direct download  
     
    Export citation  
     
    Bookmark  
  14.  23
    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 (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark