5 found
Susan Brown Trinidad [3]Susan B. Trinidad [2]Susan Trinidad [1]
  1.  39
    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.  43
    Broad Data Sharing in Genetic Research: Views of Institutional Review Board Professionals.Amy Lemke, Maureen Smith, Wendy Wolf & Susan Trinidad - 2011 - IRB: Ethics & Human Research 33 (3):1-5.
    Genome-wide association studies raise important ethical and regulatory issues. This is particularly true of the current move toward broad sharing of genomic and phenotypic data. Our survey study examined the opinions of professionals involved in human subjects protection regarding genetic research review. The majority indicated that it is important for their institutional review board to offer guidance about developing and using a data repository or biobank that includes genetic data, and also about sharing this data with other investigators. Only one-third (...)
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  3.  30
    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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  4.  27
    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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  5.  27
    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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