23 found
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  1.  32
    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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  2.  47
    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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  3.  39
    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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  4.  16
    Prenatal Whole Genome Sequencing.Greer Donley, Sara Chandros Hull & Benjamin E. Berkman - 2012 - Hastings Center Report 42 (4):28-40.
  5.  22
    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.
  6.  6
    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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  7.  7
    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.  21
    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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  9.  22
    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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  10.  12
    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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  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.
  12.  12
    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.
  13.  17
    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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  14.  9
    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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  15.  14
    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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  16.  10
    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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  17.  35
    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.
  18.  4
    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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  19.  13
    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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  20.  34
    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.
  21.  16
    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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  22.  24
    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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  23.  25
    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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