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Sara Chandros Hull [26]Sarah C. Hull [6]Sara Hull [1]
  1.  25
    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.  15
    LVAD-DT: Culture of Rescue and Liminal Experience in the Treatment of Heart Failure.Frances K. Barg, Katherine Kellom, Tali Ziv, Sarah C. Hull, Selena Suhail-Sindhu & James N. Kirkpatrick - 2017 - American Journal of Bioethics 17 (2):3-11.
    The purpose of this article is to investigate how cultural meanings associated with the left ventricular assist device inform acceptance and experience of this innovative technology when it is used as a destination therapy. We conducted open-ended, semistructured interviews with family caregivers and patients who had undergone LVAD-DT procedures at six U.S. hospitals. A grounded theory approach was used for the analysis. Thirty-nine patients and 42 caregivers participated. Participants described a sense of obligation to undergo the procedure because of its (...)
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  3.  21
    Genomic Inheritances: Disclosing Individual Research Results From Whole-Exome Sequencing to Deceased Participants' Relatives.Ben Chan, Flavia M. Facio, Haley Eidem, Sara Chandros Hull, Leslie G. Biesecker & Benjamin E. Berkman - 2012 - American Journal of Bioethics 12 (10):1-8.
    Whole-genome analysis and whole-exome analysis generate many more clinically actionable findings than traditional targeted genetic analysis. These findings may be relevant to research participants themselves as well as for members of their families. Though researchers performing genomic analyses are likely to find medically significant genetic variations for nearly every research participant, what they will find for any given participant is unpredictable. The ubiquity and diversity of these findings complicate questions about disclosing individual genetic test results. We outline an approach for (...)
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  4.  12
    Patients' Views on Identifiability of Samples and Informed Consent for Genetic Research.Sara Chandros Hull, Richard Sharp, Jeffrey Botkin, Mark Brown, Mark Hughes, Jeremy Sugarman, Debra Schwinn, Pamela Sankar, Dragana Bolcic-Jankovic, Brian Clarridge & Benjamin Wilfond - 2008 - American Journal of Bioethics 8 (10):62-70.
    It is unclear whether the regulatory distinction between non-identifiable and identifiable information—information used to determine informed consent practices for the use of clinically derived samples for genetic research—is meaningful to patients. The objective of this study was to examine patients' attitudes and preferences regarding use of anonymous and identifiable clinical samples for genetic research. Telephone interviews were conducted with 1,193 patients recruited from general medicine, thoracic surgery, or medical oncology clinics at five United States academic medical centers. Wanting to know (...)
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  5.  14
    Beyond Belmont: Ensuring Respect for AI/AN Communities Through Tribal IRBs, Laws, and Policies.Sara Chandros Hull & David R. Wilson - 2017 - American Journal of Bioethics 17 (7):60-62.
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  6.  12
    Prenatal Whole Genome Sequencing.Greer Donley, Sara Chandros Hull & Benjamin E. Berkman - 2012 - Hastings Center Report 42 (4):28-40.
    Whole genome sequencing is quickly becoming more affordable and accessible, with the prospect of personal genome sequencing for under $1,000 now widely said to be in sight. The ethical issues raised by the use of this technology in the research context have received some significant attention, but little has been written on its use in the clinical context, and most of this analysis has been futuristic forecasting. This is problematic, given the speed with which whole genome sequencing technology is likely (...)
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  7.  8
    Consent forms and the therapeutic misconception.Nancy M. P. King, Gail E. Henderson, Larry R. Churchill, Arlene M. Davis, Sara Chandros Hull, Daniel K. Nelson, P. Christy Parham-Vetter, Barbra Bluestone Rothschild, Michele M. Easter & Benjamin S. Wilfond - 2005 - IRB: Ethics & Human Research 27 (1):1-7.
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  8.  16
    Developing a Triage Protocol for the COVID-19 Pandemic: Allocating Scarce Medical Resources in a Public Health Emergency.Mark R. Mercurio, Mark D. Siegel, John Hughes, Ernest D. Moritz, Jennifer Kapo, Jennifer L. Herbst, Sarah C. Hull, Karen Jubanyik, Katherine Kraschel, Lauren E. Ferrante, Lori Bruce, Stephen R. Latham & Benjamin Tolchin - 2020 - Journal of Clinical Ethics 31 (4):303-317.
    The coronavirus disease-2019 (COVID-19) has caused shortages of life-sustaining medical resources, and future waves of the virus may cause further scarcity. The Yale New Haven Health System developed a triage protocol to allocate scarce medical resources during the COVID-19 pandemic, with the primary goal of saving the most lives possible, and a secondary goal of making triage assessments and decisions consistent, transparent, and fair. We outline the process of developing the protocol, summarize the protocol, and discuss the major ethical challenges (...)
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  9.  11
    What Does the Duty to Warn Require?Seema K. Shah, Sara Chandros Hull, Michael A. Spinner, Benjamin E. Berkman, Lauren A. Sanchez, Ruquyyah Abdul-Karim, Amy P. Hsu, Reginald Claypool & Steven M. Holland - 2013 - American Journal of Bioethics 13 (10):62 - 63.
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  10.  11
    The “Right Not to Know” in the Genomic Era: Time to Break From Tradition?Benjamin E. Berkman & Sara Chandros Hull - 2014 - American Journal of Bioethics 14 (3):28-31.
  11.  7
    The Use of Medical Records in Research: What Do Patients Want?Nancy E. Kass, Marvin R. Natowicz, Sara Chandros Hull, Ruth R. Faden, Laura Plantinga, Lawrence O. Gostin & Julia Slutsman - 2003 - Journal of Law, Medicine and Ethics 31 (3):429-433.
    In the past ten years, there has been growing interest in and concern about protecting the privacy of personal medical information. Insofar as medical records increasingly are stored electronically, and electronic information can be shared easily and widely, there have been legislative efforts as well as scholarly analyses calling for greater privacy protections to ensure that patients can feel safe disclosing personal information to their health-care providers. At the same time, the volume of biomedical research conducted in this country continues (...)
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  12.  5
    Getting It Right: How Public Engagement Might (and Might Not) Help Us Determine What Is Equitable in Genomics and Precision Medicine.Sara Chandros Hull, Lawrence C. Brody & Rene Sterling - 2023 - American Journal of Bioethics 23 (7):5-8.
    The timing of this special issue of AJOB probing whether public engagement (PE)1 might help achieve equity in genomics is no coincidence. While many issues discussed by the authors are not entirely...
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  13.  10
    The Case for Ethical Efficiency: A System That Has Run Out of Time.John L. Havlik, Mark R. Mercurio & Sarah C. Hull - 2022 - Hastings Center Report 52 (2):14-20.
    Hastings Center Report, Volume 52, Issue 2, Page 14-20, March‐April 2022.
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  14.  6
    The Use of Medical Records in Research: What Do Patients Want?Nancy E. Kass, Marvin R. Natowicz, Sara Chandros Hull, Ruth R. Faden, Laura Plantinga, Lawrence O. Gostin & Julia Slutsman - 2003 - Journal of Law, Medicine and Ethics 31 (3):429-433.
    In the past ten years, there has been growing interest in and concern about protecting the privacy of personal medical information. Insofar as medical records increasingly are stored electronically, and electronic information can be shared easily and widely, there have been legislative efforts as well as scholarly analyses calling for greater privacy protections to ensure that patients can feel safe disclosing personal information to their health-care providers. At the same time, the volume of biomedical research conducted in this country continues (...)
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  15.  11
    Reflections on New Evidence on Crisis Standards of Care in the COVID-19 Pandemic.Mark R. Mercurio, Mark D. Siegel, John Hughes, Ernest D. Moritz, Jennifer Kapo, Jennifer L. Herbst, Sarah C. Hull, Karen Jubanyik, Katherine Kraschel, Lauren E. Ferrante, Lori Bruce, Stephen R. Latham & Benjamin Tolchin - 2021 - Journal of Clinical Ethics 32 (4):358-360.
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  16.  10
    Triage and justice in an unjust pandemic: ethical allocation of scarce medical resources in the setting of racial and socioeconomic disparities.Benjamin Tolchin, Sarah C. Hull & Katherine Kraschel - 2021 - Journal of Medical Ethics 47 (3):200-202.
    Shortages of life-saving medical resources caused by COVID-19 have prompted hospitals, healthcare systems, and governmentsto develop crisis standards of care, including 'triage protocols' to potentially ration medical supplies during the public health emergency. At the same time, the pandemic has highlighted and exacerbated racial, ethnic, and socioeconomic health disparities that together constitute a form of structural racism. These disparities pose a critical ethical challenge in developing fair triage systems that will maximize lives saved without perpetuating systemic inequities. Here we review (...)
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  17.  11
    Reading between the Lines: Direct‐to‐Consumer Advertising of Genetic Testing.Sara Chandros Hull & Kiran Prasad - 2001 - Hastings Center Report 31 (3):33-35.
    A case study in the kinds of problems to expect from this increasingly popular marketing tactic.
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  18.  16
    Allocation of Opportunities to Participate in Clinical Trials during the Covid‐19 Pandemic and Other Public Health Emergencies.Kayte Spector-Bagdady, Holly Fernandez Lynch, Barbara E. Bierer, Luke Gelinas, Sara Chandros Hull, David Magnus, Michelle N. Meyer, Richard R. Sharp, Jeremy Sugarman, Benjamin S. Wilfond, Ruqaiijah Yearby & Seema Mohapatra - 2021 - Hastings Center Report 52 (1):51-58.
    Hastings Center Report, Volume 52, Issue 1, Page 51-58, January/February 2022.
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  19.  9
    Scrutinizing the Right Not to Know.Benjamin E. Berkman, Sara Chandros Hull & Leslie G. Biesecker - 2015 - American Journal of Bioethics 15 (7):17-19.
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  20.  10
    Genetic research involving human biological materials: a need to tailor current consent forms.Sara Chandros Hull, Holly Gooding, Alison P. Klein, Esther Warshauer-Baker, Susan Metosky & Benjamin S. Wilfond - 2004 - IRB: Ethics & Human Research 26 (3):1.
  21.  25
    The Invisible Hand in Clinical Research: The Study Coordinator's Critical Role in Human Subjects Protection.Arlene M. Davis, Sara Chandros Hull, Christine Grady, Benjamin S. Wilfond & Gail E. Henderson - 2002 - Journal of Law, Medicine and Ethics 30 (3):411-419.
    Over the past decade, the number of clinical trials registered with the Food and Drug Administration has increased dramatically. The business of clinical research has become more diverse, involving academic institutions, clinician-researchers in community settings, pharmaceutical companies, and contract research organizations. This growth has been accompanied by increasing concerns about the ethical conduct of research. Much of this concern has been directed to procedural issues including institutional review board review, data monitoring, and informed consent forms. However, the protection of human (...)
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  22.  14
    The Meaning of Informed Consent: Genome Editing Clinical Trials for Sickle Cell Disease.Stacy Desine, Brittany M. Hollister, Khadijah E. Abdallah, Anitra Persaud, Sara Chandros Hull & Vence L. Bonham - 2020 - AJOB Empirical Bioethics 11 (4):195-207.
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  23.  6
    Care Labor in VAD Therapy: Some Feminist Concerns.Georgina D. Campelia, Frances K. Barg, James N. Kirkpatrick & Sarah C. Hull - 2019 - Perspectives in Biology and Medicine 62 (4):640-656.
    Though many argue over root causes, few dispute the existence of gender disparities across our societal landscape. Patriarchal norms consistently obstruct the flourishing of those who identify themselves as women, those who are identified by others as women, and generally those who gender-identify in ways that challenge the norms of heterosexual cis-gender male privilege. Acknowledging the limits of our analysis, here we focus on some of the disparities faced by women in particular.1 From the persistent wage gap despite women's steadily (...)
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  24.  11
    The Invisible Hand in Clinical Research: The Study Coordinator's Critical Role in Human Subjects Protection.Arlene M. Davis, Sara Chandros Hull, Christine Grady, Benjamin S. Wilfond & Gail E. Henderson - 2002 - Journal of Law, Medicine and Ethics 30 (3):411-419.
    Over the past decade, the number of clinical trials registered with the Food and Drug Administration has increased dramatically. The business of clinical research has become more diverse, involving academic institutions, clinician-researchers in community settings, pharmaceutical companies, and contract research organizations. This growth has been accompanied by increasing concerns about the ethical conduct of research. Much of this concern has been directed to procedural issues including institutional review board review, data monitoring, and informed consent forms. However, the protection of human (...)
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  25.  5
    The Limits of Disclosure: What Research Subjects Want to Know about Investigator Financial Interests.Christine Grady, Elizabeth Horstmann, Jeffrey S. Sussman & Sara Chandros Hull - 2006 - Journal of Law, Medicine and Ethics 34 (3):592-599.
    Research participants' views about investigator financial interests were explored. Reactions ranged from concern to acceptance, indifference, and even encouragement. Although most wanted such information, some said it did not matter, was private, or was burdensome, and other factors were more important to research decisions. Very few said it would affect their research decisions, and many assumed that institutions managed potential conflicts of interest. Although disclosure of investigator financial interest information to research participants is often recommended, its usefulness is limited, especially (...)
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  26.  8
    The Limits of Disclosure: What Research Subjects Want to Know about Investigator Financial Interests.Christine Grady, Elizabeth Horstmann, Jeffrey S. Sussman & Sara Chandros Hull - 2006 - Journal of Law, Medicine and Ethics 34 (3):592-599.
    Concerns about the influence of financial interests on research have increased, along with research dollars from pharmaceutical and other for-profit companies. Researchers’ financial ties to industry sponsors of research have also increased. Financial interests in biomedical research could influence research design, conduct, or reporting, and could compromise data integrity, participant safety, or both. Investigators’ financial ties with for-profit companies may influence reported scientific results, and may have compromised research participant safety.Disclosure is one commonly accepted method of managing financial relationships in (...)
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  27.  7
    Harms of Deception in FMR1 Premutation Genotype-Driven Recruitment.Sam Doernberg & Sara Chandros Hull - 2017 - American Journal of Bioethics 17 (4):62-63.
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  28.  4
    Recruitment Approaches for Family Studies: Attitudes of Index Patients and Their Relatives.Sara Chandros Hull, Karen Glanz, Alana Steffen & Benjamin S. Wilfond - 2004 - IRB: Ethics & Human Research 26 (4):12.
  29.  8
    Response to Open Peer Commentaries on “Genomic Inheritances: Disclosing Individual Research Results From Whole-Exome Sequencing to Deceased Participants' Relatives”.Sara Chandros Hull, Ben Chan, Leslie G. Biesecker & Benjamin E. Berkman - 2012 - American Journal of Bioethics 12 (12):W9-W10.
  30.  10
    Solidarity as an Aspirational Basis for Partnership with Tribal Communities.Sara Chandros Hull, F. Leah Nez & Juliana M. Blome - 2021 - American Journal of Bioethics 21 (10):14-17.
    Saunkeah et al. argue convincingly that although respect for Tribal sovereignty is often invoked as a core justification for Tribal research protections, an expanded ethical framework is req...
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  31.  10
    Single IRBs Are Responsible to Ensure Consent Language Effectively Conveys the Local Context.Sara Chandros Hull & Adam I. Schiffenbauer - 2019 - American Journal of Bioethics 19 (4):85-86.
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  32.  5
    What Does It Mean To Be Identifiable?Sara Chandros Hull & Benjamin Wilfond - 2008 - American Journal of Bioethics 8 (10):7-8.
    It is unclear whether the regulatory distinction between non-identifiable and identifiable information—information used to determine informed consent practices for the use of clinically derived samples for genetic research—is meaningful to patients. The objective of this study was to examine patients' attitudes and preferences regarding use of anonymous and identifiable clinical samples for genetic research. Telephone interviews were conducted with 1,193 patients recruited from general medicine, thoracic surgery, or medical oncology clinics at five United States academic medical centers. Wanting to know (...)
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  33.  3
    Framing the "Right to Withdraw" in the Use of Biospecimens for iPSC Research.Justin Lowenthal & Sara Chandros Hull - 2013 - Ethics in Biology, Engineering and Medicine 4 (1):1-14.
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