14 found
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Kyle B. Brothers [12]Kyle Bertram Brothers [2]
  1.  21
    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.  11
    Unregulated Health Research Using Mobile Devices: Ethical Considerations and Policy Recommendations.Mark A. Rothstein, John T. Wilbanks, Laura M. Beskow, Kathleen M. Brelsford, Kyle B. Brothers, Megan Doerr, Barbara J. Evans, Catherine M. Hammack-Aviran, Michelle L. McGowan & Stacey A. Tovino - 2020 - Journal of Law, Medicine and Ethics 48 (S1):196-226.
    Mobile devices with health apps, direct-to-consumer genetic testing, crowd-sourced information, and other data sources have enabled research by new classes of researchers. Independent researchers, citizen scientists, patient-directed researchers, self-experimenters, and others are not covered by federal research regulations because they are not recipients of federal financial assistance or conducting research in anticipation of a submission to the FDA for approval of a new drug or medical device. This article addresses the difficult policy challenge of promoting the welfare and interests of (...)
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  3.  14
    Citizen Science on Your Smartphone: An ELSI Research Agenda: Currents in Contemporary Bioethics.Mark A. Rothstein, John T. Wilbanks & Kyle B. Brothers - 2015 - Journal of Law, Medicine and Ethics 43 (4):897-903.
    Beginning in the 20th century, scientific research came to be dominated by a growing class of credentialed, professional scientists who overwhelmingly displaced the learned amateurs of an earlier time. By the end of the century, however, the exclusive realm of professional scientists conducting research was joined, to a degree, by “citizen scientists.” The term originally encompassed non-professionals assisting professional scientists by contributing observations and measurements to ongoing research enterprises. These collaborations were especially common in the environmental sciences, where citizen scientists (...)
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  4.  8
    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.  30
    Parents’ Attitudes Toward Consent and Data Sharing in Biobanks: A Multisite Experimental Survey.Armand H. Matheny Antommaria, Kyle B. Brothers, John A. Myers, Yana B. Feygin, Sharon A. Aufox, Murray H. Brilliant, Pat Conway, Stephanie M. Fullerton, Nanibaa’ A. Garrison, Carol R. Horowitz, Gail P. Jarvik, Rongling Li, Evette J. Ludman, Catherine A. McCarty, Jennifer B. McCormick, Nathaniel D. Mercaldo, Melanie F. Myers, Saskia C. Sanderson, Martha J. Shrubsole, Jonathan S. Schildcrout, Janet L. Williams, Maureen E. Smith, Ellen Wright Clayton & Ingrid A. Holm - 2018 - AJOB Empirical Bioethics 9 (3):128-142.
  6.  25
    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.  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.  33
    “Human Non-Subjects Research”: Privacy and Compliance.Kyle Bertram Brothers & Ellen Wright Clayton - 2010 - American Journal of Bioethics 10 (9):15-17.
  9.  11
    Motivation in the Age of Genomics: Why Genetic Findings of Disease Susceptibility Might Not Motivate Behavior Change.Kyle B. Brothers, Sarah J. Beal & Tinsley H. G. Webster - 2013 - Life Sciences, Society and Policy 9 (1):1-15.
    There is a growing consensus that results generated through multiplex genetic tests, even those produced as a part of research, should be reported to providers and patients when they are considered “actionable,” that is, when they could be used to inform some potentially beneficial clinical action. However, there remains controversy over the precise criterion that should be used in identifying when a result meets this standard. In this paper, we seek to refine the concept of “actionability” by exploring one proposed (...)
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  10. “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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  11.  7
    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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  12.  22
    Gesundheitliche Eigenverantwortung im Kontext Individualisierter MedizinResponsibility for health in the context of individualized medicine.Martin Langanke, Tobias Fischer, Pia Erdmann & Kyle B. Brothers - 2013 - Ethik in der Medizin 25 (3):243-250.
    ZusammenfassungDer Aufsatz analysiert den Konnex zwischen Individualisierter Medizin und der Forderung nach mehr gesundheitlicher Eigenverantwortung, der oft als plausibel angenommen wird, wenn der Individualisierten Medizin das Potential zugesprochen wird, das solidarisch finanzierte Gesundheitssystem in Deutschland zu transformieren. Ausgehend von einer logischen Rekonstruktion des Verantwortungsbegriffs, die dessen Operationalisierbarkeit unter anderem an Sanktionsvollmachten der jeweiligen Verantwortungsinstanz bindet, und basierend auf einem terminologisch präzisierten Verständnis von Individualisierter Medizin wird folgende These entwickelt: Die Annahme, im Rahmen Individualisierter Medizin sei eine verlässliche Prädiktion anlagebedingter und (...)
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  13.  1
    Responsibility for Health in the Context of Individualized Medicine.Martin Langanke, Tobias Fischer, Pia Erdmann & Kyle B. Brothers - 2013 - Ethik in der Medizin 25 (3):243-250.
    ZusammenfassungDer Aufsatz analysiert den Konnex zwischen Individualisierter Medizin und der Forderung nach mehr gesundheitlicher Eigenverantwortung, der oft als plausibel angenommen wird, wenn der Individualisierten Medizin das Potential zugesprochen wird, das solidarisch finanzierte Gesundheitssystem in Deutschland zu transformieren. Ausgehend von einer logischen Rekonstruktion des Verantwortungsbegriffs, die dessen Operationalisierbarkeit unter anderem an Sanktionsvollmachten der jeweiligen Verantwortungsinstanz bindet, und basierend auf einem terminologisch präzisierten Verständnis von Individualisierter Medizin wird folgende These entwickelt: Die Annahme, im Rahmen Individualisierter Medizin sei eine verlässliche Prädiktion anlagebedingter und (...)
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  14.  8
    Legal and Ethical Challenges of International Direct-to-Participant Genomic Research: Conclusions and Recommendations.Mark A. Rothstein, Ma'N. H. Zawati, Laura M. Beskow, Kathleen M. Brelsford, Kyle B. Brothers, Catherine M. Hammack-Aviran, James W. Hazel, Yann Joly, Michael Lang, Dimitri Patrinos, Andrea Saltzman & Bartha Maria Knoppers - 2019 - Journal of Law, Medicine and Ethics 47 (4):705-731.