18 found
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  1.  62
    Beyond Consent: Building Trusting Relationships With Diverse Populations in Precision Medicine Research.Stephanie A. Kraft, Mildred K. Cho, Katherine Gillespie, Meghan Halley, Nina Varsava, Kelly E. Ormond, Harold S. Luft, Benjamin S. Wilfond & Sandra Soo-Jin Lee - 2018 - American Journal of Bioethics 18 (4):3-20.
    With the growth of precision medicine research on health data and biospecimens, research institutions will need to build and maintain long-term, trusting relationships with patient-participants. While trust is important for all research relationships, the longitudinal nature of precision medicine research raises particular challenges for facilitating trust when the specifics of future studies are unknown. Based on focus groups with racially and ethnically diverse patients, we describe several factors that influence patient trust and potential institutional approaches to building trustworthiness. Drawing on (...)
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  2.  5
    Obligations of the “Gift”: Reciprocity and Responsibility in Precision Medicine.Sandra Soo-Jin Lee - 2020 - American Journal of Bioethics 21 (4):57-66.
    Precision medicine relies on data and biospecimens from participants who willingly offer their personal information on the promise that this act will ultimately result in knowledge that will improve human health. Drawing on anthropological framings of the “gift,” this paper contextualizes participation in precision medicine as inextricable from social relationships and their ongoing ethical obligations. Going beyond altruism, reframing biospecimen and data collection in terms of socially regulated gift-giving recovers questions of responsibility and care. As opposed to conceiving participation in (...)
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  3.  30
    Patient Perspectives on the Learning Health System: The Importance of Trust and Shared Decision Making.Maureen Kelley, Cyan James, Stephanie Alessi Kraft, Diane Korngiebel, Isabelle Wijangco, Emily Rosenthal, Steven Joffe, Mildred K. Cho, Benjamin Wilfond & Sandra Soo-Jin Lee - 2015 - American Journal of Bioethics 15 (9):4-17.
    We conducted focus groups to assess patient attitudes toward research on medical practices in the context of usual care. We found that patients focus on the implications of this research for their relationship with and trust in their physicians. Patients view research on medical practices as separate from usual care, demanding dissemination of information and in most cases, individual consent. Patients expect information about this research to come through their physician, whom they rely on to identify and filter associated risks. (...)
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  4.  22
    Trustworthiness in Untrustworthy Times: Response to Open Peer Commentaries on Beyond Consent.Stephanie A. Kraft, Mildred K. Cho, Katherine Gillespie, Nina Varsava, Kelly E. Ormond, Benjamin S. Wilfond & Sandra Soo-Jin Lee - 2018 - American Journal of Bioethics 18 (5):W6-W8.
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  5.  22
    Research 2.0: Social Networking and Direct-To-Consumer (DTC) Genomics.Sandra Soo-Jin Lee & LaVera Crawley - 2009 - American Journal of Bioethics 9 (6-7):35-44.
    The convergence of increasingly efficient high throughput sequencing technology and ubiquitous Internet use by the public has fueled the proliferation of companies that provide personal genetic information (PGI) direct-to-consumers. Companies such as 23andme (Mountain View, CA) and Navigenics (Foster City, CA) are emblematic of a growing market for PGI that some argue represents a paradigm shift in how the public values this information and incorporates it into how they behave and plan for their futures. This new class of social networking (...)
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  6.  24
    Adrift in the Gray Zone: IRB Perspectives on Research in the Learning Health System.Sandra Soo-Jin Lee, Maureen Kelley, Mildred K. Cho, Stephanie Alessi Kraft, Cyan James, Melissa Constantine, Adrienne N. Meyer, Douglas Diekema, Alexander M. Capron, Benjamin S. Wilfond & David Magnus - 2016 - Ajob Empirical Bioethics 7 (2):125-134.
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  7.  4
    Participant Reactions to a Literacy-Focused, Web-Based Informed Consent Approach for a Genomic Implementation Study.Stephanie A. Kraft, Kathryn M. Porter, Devan M. Duenas, Claudia Guerra, Galen Joseph, Sandra Soo-Jin Lee, Kelly J. Shipman, Jake Allen, Donna Eubanks, Tia L. Kauffman, Nangel M. Lindberg, Katherine Anderson, Jamilyn M. Zepp, Marian J. Gilmore, Kathleen F. Mittendorf, Elizabeth Shuster, Kristin R. Muessig, Briana Arnold, Katrina A. B. Goddard & Benjamin S. Wilfond - 2021 - AJOB Empirical Bioethics 12 (1):1-11.
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  8.  11
    Introduction to the Article Collection ‘Translation in Healthcare: Ethical, Legal, and Social Implications’.Michael Morrison, Donna Dickenson & Sandra Soo-Jin Lee - 2016 - BMC Medical Ethics 17 (1):74.
    New technologies are transforming and reconfiguring the boundaries between patients, research participants and consumers, between research and clinical practice, and between public and private domains. From personalised medicine to big data and social media, these platforms facilitate new kinds of interactions, challenge longstanding understandings of privacy and consent, and raise fundamental questions about how the translational patient pathway should be organised.This editorial introduces the cross-journal article collection "Translation in healthcare: ethical, legal, and social implications", briefly outlining the genesis of the (...)
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  9.  10
    Lessons Learned From the U.S. Public Health Service Syphilis Study at Tuskegee: Incorporating a Discourse on Relationships Into the Ethics of Research Participation Among Asian Americans.Sandra Soo-Jin Lee - 2012 - Ethics and Behavior 22 (6):489-492.
  10.  6
    Dys-Appearing Tongues and Bodily Memories: The Aging of First-Generation Resident Koreans in Japan.Sandra Soo-Jin Lee - 2000 - Ethos: Journal of the Society for Psychological Anthropology 28 (2):198-223.
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  11.  14
    The Role of Patient Perspectives in Clinical Research Ethics and Policy: Response to Open Peer Commentaries on “Patient Perspectives on the Learning Health System”.Maureen Kelley, Cyan James, Stephanie Alessi Kraft, Diane Korngiebel, Isabelle Wijangco, Steven Joffe, Mildred K. Cho, Benjamin Wilfond & Sandra Soo-Jin Lee - 2016 - American Journal of Bioethics 16 (2):7-9.
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  12.  13
    Assessing the Pedagogical Goals of Self-Testing in Evaluating the Consultation Needs of Different Student Populations.Sandra Soo-Jin Lee & Simone Vernez - 2012 - American Journal of Bioethics 12 (4):41-43.
    The American Journal of Bioethics, Volume 12, Issue 4, Page 41-43, April 2012.
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  13.  14
    Dys‐Appearing Tongues and Bodily Memories: The Aging of First‐Generation Resident Koreans in Japan.Sandra Soo-Jin Lee - 2000 - Ethos: Journal of the Society for Psychological Anthropology 28 (2):198-223.
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  14.  3
    Excavating the Personal Genome: The Good Biocitizen in the Age of Precision Health.Sandra Soo-Jin Lee - 2020 - Hastings Center Report 50 (S1):S54-S61.
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  15.  13
    Response to Open Peer Commentaries on “Research 2.0: Social Networking and Direct-to-Consumer Personal Genomics”.Sandra Soo-Jin Lee & LaVera Crawley - 2009 - American Journal of Bioethics 9 (6-7):1-3.
    The convergence of increasingly efficient high throughput sequencing technology and ubiquitous Internet use by the public has fueled the proliferation of companies that provide personal genetic information direct-to-consumers. Companies such as 23andme and Navigenics are emblematic of a growing market for PGI that some argue represents a paradigm shift in how the public values this information and incorporates it into how they behave and plan for their futures. This new class of social networking business ventures that market the science of (...)
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  16.  3
    Response to Open Peer Commentaries: Distinguishing the “Gift” From “Donation” as a Path Toward Reciprocity and Relational Ethics.Sandra Soo-Jin Lee - 2020 - American Journal of Bioethics 21 (4):W1-W3.
    Precision medicine relies on data and biospecimens from participants who willingly offer their personal information on the promise that this act will ultimately result in knowledge that will improv...
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  17.  16
    Studying “Friends”: The Ethics of Using Social Media as Research Platforms.Sandra Soo-Jin Lee - 2017 - American Journal of Bioethics 17 (3):1-2.
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  18. Accounting for Complexity: Gene–Environment Interaction Research and the Moral Economy of Quantification.Janet K. Shim, Robert A. Hiatt, Sandra Soo-Jin Lee, Katherine Weatherford Darling & Sara L. Ackerman - 2016 - Science, Technology, and Human Values 41 (2):194-218.
    Scientists now agree that common diseases arise through interactions of genetic and environmental factors, but there is less agreement about how scientific research should account for these interactions. This paper examines the politics of quantification in gene–environment interaction research. Drawing on interviews and observations with GEI researchers who study common, complex diseases, we describe quantification as an unfolding moral economy of science, in which researchers collectively enact competing “virtues.” Dominant virtues include molecular precision, in which behavioral and social risk factors (...)
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