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Stephanie M. Fullerton [18]Stephanie Malia Fullerton [1]
  1.  87
    Broad Consent for Research With Biological Samples: Workshop Conclusions.Christine Grady, Lisa Eckstein, Ben Berkman, Dan Brock, Robert Cook-Deegan, Stephanie M. Fullerton, Hank Greely, Mats G. Hansson, Sara Hull, Scott Kim, Bernie Lo, Rebecca Pentz, Laura Rodriguez, Carol Weil, Benjamin S. Wilfond & David Wendler - 2015 - American Journal of Bioethics 15 (9):34-42.
    Different types of consent are used to obtain human biospecimens for future research. This variation has resulted in confusion regarding what research is permitted, inadvertent constraints on future research, and research proceeding without consent. The National Institutes of Health Clinical Center's Department of Bioethics held a workshop to consider the ethical acceptability of addressing these concerns by using broad consent for future research on stored biospecimens. Multiple bioethics scholars, who have written on these issues, discussed the reasons for consent, the (...)
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  2.  85
    Has the biobank bubble burst? Withstanding the challenges for sustainable biobanking in the digital era.Don Chalmers, Dianne Nicol, Jane Kaye, Jessica Bell, Alastair V. Campbell, Calvin W. L. Ho, Kazuto Kato, Jusaku Minari, Chih-Hsing Ho, Colin Mitchell, Fruzsina Molnár-Gábor, Margaret Otlowski, Daniel Thiel, Stephanie M. Fullerton & Tess Whitton - 2016 - BMC Medical Ethics 17 (1):1.
    _BMC Medical Ethics_ is an open access journal publishing original peer-reviewed research articles in relation to the ethical aspects of biomedical research and clinical practice, including professional choices and conduct, medical technologies, healthcare systems and health policies. _BMC __Medical Ethics _is part of the _BMC_ series which publishes subject-specific journals focused on the needs of individual research communities across all areas of biology and medicine. We do not make editorial decisions on the basis of the interest of a study or (...)
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  3.  14
    Community Engagement in Precision Medicine Research: Organizational Practices and Their Impacts for Equity.Janet K. Shim, Nicole Foti, Emily Vasquez, Stephanie M. Fullerton, Michael Bentz, Melanie Jeske & Sandra Soo-Jin Lee - 2023 - AJOB Empirical Bioethics 14 (4):185-196.
    Background In the wake of mandates for biomedical research to increase participation by members of historically underrepresented populations, community engagement (CE) has emerged as a key intervention to help achieve this goal.Methods Using interviews, observations, and document analysis, we examine how stakeholders in precision medicine research understand and seek to put into practice ideas about who to engage, how engagement should be conducted, and what engagement is for.Results We find that ad hoc, opportunistic, and instrumental approaches to CE exacted significant (...)
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  4.  14
    Interrogating the Value of Return of Results for Diverse Populations: Perspectives from Precision Medicine Researchers.Caitlin E. McMahon, Nicole Foti, Melanie Jeske, William R. Britton, Stephanie M. Fullerton, Janet K. Shim & Sandra Soo-Jin Lee - 2024 - AJOB Empirical Bioethics 15 (2):108-119.
    Background Over the last decade, the return of results (ROR) in precision medicine research (PMR) has become increasingly routine. Calls for individual rights to research results have extended the “duty to report” from clinically useful genetic information to traits and ancestry results. ROR has thus been reframed as inherently beneficial to research participants, without a needed focus on who benefits and how. This paper addresses this gap, particularly in the context of PMR aimed at increasing participant diversity, by providing investigator (...)
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  5.  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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  6.  58
    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.
    Background: The factors influencing parents’ willingness to enroll their children in biobanks are poorly understood. This study sought to assess parents’ willingness to enroll their children, and their perceived benefits, concerns, and information needs under different consent and data-sharing scenarios, and to identify factors associated with willingness. Methods: This large, experimental survey of patients at the 11 eMERGE Network sites used a disproportionate stratified sampling scheme to enrich the sample with historically underrepresented groups. Participants were randomized to receive one of (...)
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  7.  12
    Diversity and Inclusion in Unregulated mHealth Research: Addressing the Risks.Shawneequa Callier & Stephanie M. Fullerton - 2020 - Journal of Law, Medicine and Ethics 48 (S1):115-121.
    mHealth devices and applications, with their wide accessibility and ease of use, have the potential to address persistent inequities in biomedical research participation. Yet, while mHealth technologies may facilitate more inclusive research participation, negative features of some unregulated use in research — misleading enrollment practices, the promotion of secondary mHealth applications, discriminatory profiling, and poorer quality feedback due to dependencies on biased data and algorithms — may threaten the trust and engagement of underrepresented individuals and communities. To maximize the participation (...)
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  8.  97
    Race-Based Medicine and Justice as Recognition: Exploring the Phenomenon of BiDil.Joon-ho Yu, Sara Goering & Stephanie M. Fullerton - 2009 - Cambridge Quarterly of Healthcare Ethics 18 (1):57.
    In the United States, health disparities have been framed by categories of race. Racial health disparities have been documented for cardiovascular disease, cancer, diabetes, HIV/AIDS, and numerous other diseases and measures of health status. Although such disparities can be read as symptoms of disparities in healthcare access, pervasive social and economic inequities, and discrimination, some have suggested that the disparities might be due, at least in part, to biological differences based on race. Or, to be more precise, if race itself (...)
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  9.  13
    Public Perspectives on Investigative Genetic Genealogy: Findings from a National Focus Group Study.Jacklyn Dahlquist, Jill O. Robinson, Amira Daoud, Whitney Bash-Brooks, Amy L. McGuire, Christi J. Guerrini & Stephanie M. Fullerton - forthcoming - AJOB Empirical Bioethics.
    Background Investigative genetic genealogy (IGG) is a technique that involves uploading genotypes developed from perpetrator DNA left at a crime scene, or DNA from unidentified remains, to public genetic genealogy databases to identify genetic relatives and, through the creation of a family tree, the individual who was the source of the DNA. As policymakers demonstrate interest in regulating IGG, it is important to understand public perspectives on IGG to determine whether proposed policies are aligned with public attitudes.Methods We conducted eight (...)
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  10.  78
    An Ethical Framework for Research Using Genetic Ancestry.Anna C. F. Lewis, Santiago J. Molina, Paul S. Appelbaum, Bege Dauda, Agustin Fuentes, Stephanie M. Fullerton, Nanibaa' A. Garrison, Nayanika Ghosh, Robert C. Green, Evelynn M. Hammonds, Janina M. Jeff, David S. Jones, Eimear E. Kenny, Peter Kraft, Madelyn Mauro, Anil P. S. Ori, Aaron Panofsky, Mashaal Sohail, Benjamin M. Neale & Danielle S. Allen - 2023 - Perspectives in Biology and Medicine 66 (2):225-248.
    ABSTRACT:A wide range of research uses patterns of genetic variation to infer genetic similarity between individuals, typically referred to as genetic ancestry. This research includes inference of human demographic history, understanding the genetic architecture of traits, and predicting disease risk. Researchers are not just structuring an intellectual inquiry when using genetic ancestry, they are also creating analytical frameworks with broader societal ramifications. This essay presents an ethics framework in the spirit of virtue ethics for these researchers: rather than focus on (...)
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  11.  55
    Secondary uses and the governance of de-identified data: Lessons from the human genome diversity panel.Stephanie M. Fullerton & Sandra S.-J. Lee - 2011 - BMC Medical Ethics 12 (1):16.
    Background: Recent changes to regulatory guidance in the US and Europe have complicated oversight of secondary research by rendering most uses of de-identified data exempt from human subjects oversight. To identify the implications of such guidelines for harms to participants and communities, this paper explores the secondary uses of one de-identified DNA sample collection with limited oversight: the Human Genome Diversity Project (HGDP)-Centre d'Etude du Polymorphisme Humain, Fondation Jean Dausset (CEPH) Human Genome Diversity Panel. Methods: Using a combination of keyword (...)
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  12.  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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  13.  24
    Relationships with test-tubes: Where's the reciprocity?Kelly Fryer-Edwards & Stephanie M. Fullerton - 2006 - American Journal of Bioethics 6 (6):36 – 38.
  14.  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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  15.  31
    No Panacea: Next-Gen Sequencing Will Not Mitigate Adoptees’ Lack of Genetic Family Health History.Stephanie M. Fullerton - 2016 - American Journal of Bioethics 16 (12):41-43.
  16.  23
    Sharing data and experience: Using the clinical and translational science award (CTSA) “moral community” to improve research ethics consultation.Maureen Kelley, Kelly Fryer-Edwards, Stephanie M. Fullerton, Thomas H. Gallagher & Benjamin Wilfond - 2008 - American Journal of Bioethics 8 (3):37 – 39.
    We face significant challenges in the translation of basic biomedical research into meaningful improvements in patients' health, moving research from “bench to bedside.” The federal government's ne...
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  17.  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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  18.  27
    On the absence of biology in philosophical considerations of race.Stephanie Malia Fullerton - 2007 - In Shannon Sullivan & Nancy Tuana (eds.), Race and Epistemologies of Ignorance. State Univ of New York Pr.
  19.  32
    Review of Inmaculada de melo-Martin, taking biology seriously: What biology can & cannot tell us about moral & public policy issues. [REVIEW]Suzanne Holland & Stephanie M. Fullerton - 2007 - American Journal of Bioethics 7 (10):47 – 48.