12 found
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  1.  27
    Informed Consent in Translational Genomics: Insufficient Without Trustworthy Governance.Wylie Burke, Laura M. Beskow, Susan Brown Trinidad, Stephanie M. Fullerton & Kathleen Brelsford - 2018 - Journal of Law, Medicine and Ethics 46 (1):79-86.
    Neither the range of potential results from genomic research that might be returned to participants nor future uses of stored data and biospecimens can be fully predicted at the outset of a study. Informed consent procedures require clear explanations about how and by whom decisions are made and what principles and criteria apply. To ensure trustworthy research governance, there is also a need for empirical studies incorporating public input to evaluate and strengthen these processes.
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  2.  11
    If you build it, they will come: unintended future uses of organised health data collections.Kieran C. O’Doherty, Emily Christofides, Jeffery Yen, Heidi Beate Bentzen, Wylie Burke, Nina Hallowell, Barbara A. Koenig & Donald J. Willison - 2016 - BMC Medical Ethics 17 (1):54.
    Health research increasingly relies on organized collections of health data and biological samples. There are many types of sample and data collections that are used for health research, though these are collected for many purposes, not all of which are health-related. These collections exist under different jurisdictional and regulatory arrangements and include: 1) Population biobanks, cohort studies, and genome databases 2) Clinical and public health data 3) Direct-to-consumer genetic testing 4) Social media 5) Fitness trackers, health apps, and biometric data (...)
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  3.  8
    Mapping the Ethics of Translational Genomics: Situating Return of Results and Navigating the Research‐Clinical Divide.Susan M. Wolf, Wylie Burke & Barbara A. Koenig - 2015 - Journal of Law, Medicine and Ethics 43 (3):486-501.
    Both bioethics and law have governed human genomics by distinguishing research from clinical practice. Yet the rise of translational genomics now makes this traditional dichotomy inadequate. This paper pioneers a new approach to the ethics of translational genomics. It maps the full range of ethical approaches needed, proposes a “layered” approach to determining the ethics framework for projects combining research and clinical care, and clarifies the key role that return of results can play in advancing translation.
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  4.  15
    Translational Genomics: Seeking a Shared Vision of Benefit.Wylie Burke, Patricia Kuszler, Helene Starks, Suzanne Holland & Nancy Press - 2008 - American Journal of Bioethics 8 (3):54-56.
  5.  13
    Beneficence, Clinical Urgency, and the Return of Individual Research Results to Relatives.Stephanie M. Fullerton, Susan Brown Trinidad, Gail P. Jarvik & Wylie Burke - 2012 - American Journal of Bioethics 12 (10):9-10.
    The American Journal of Bioethics, Volume 12, Issue 10, Page 9-10, October 2012.
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  6.  22
    Looking for Trouble and Finding It.Susan B. Trinidad, Stephanie M. Fullerton & Wylie Burke - 2015 - American Journal of Bioethics 15 (7):15-17.
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  7.  16
    Patients' Choices for Return of Exome Sequencing Results to Relatives in the Event of Their Death.Laura M. Amendola, Martha Horike-Pyne, Susan B. Trinidad, Stephanie M. Fullerton, Barbara J. Evans, Wylie Burke & Gail P. Jarvik - 2015 - Journal of Law, Medicine and Ethics 43 (3):476-485.
    The informed consent process for genetic testing does not commonly address preferences regarding disclosure of results in the event of the patient's death. Adults being tested for familial colorectal cancer were asked whether they want their exome sequencing results disclosed to another person in the event of their death prior to receiving the results. Of 78 participants, 92% designated an individual and 8% declined to. Further research will help refine practices for informed consent.
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  8.  11
    Practicing Moral Medicine: Patient Care to Public Health.Denise M. Dudzinski & Wylie Burke - 2006 - American Journal of Bioethics 6 (2):75-76.
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  9.  33
    The Precautionary Principle for Shift-Work Research and Decision-Making.Charleen D. Adams, Erika Blacksher & Wylie Burke - 2019 - Public Health Ethics 12 (1):44-53.
    Shift work is a fixture of our 24-hour economy, with approximately 18 per cent of workers in the USA engaging in shift work, many overnight. Since shift work has been linked to an increased risk for an array of serious maladies, including cardiometabolic disorders and cancer, and is done disproportionately by the poor and by minorities, shift work is a highly prevalent economic and occupational health disparity. Here we draw primarily on the state of science around shift work and breast (...)
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  10.  4
    Solidarity: A Missing Component of Research Ethics.Wylie Burke - 2021 - American Journal of Bioethics 21 (10):20-21.
    Solidarity means standing with others: expressing support in times of stress and working together toward shared goals. As Saunkeah and colleagues note, solidarity also incorp...
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  11.  13
    Genomes in Context.Wylie Burke - 2019 - American Journal of Bioethics 19 (1):66-67.
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  12.  17
    Banning Pens and Pads Misses the Main Point.Sharon F. Terry & Wylie Burke - 2003 - American Journal of Bioethics 3 (3):63-65.
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