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  1. Relevant Information and Informed Consent in Research: In Defense of the Subjective Standard of Disclosure.Vilius Dranseika, Jan Piasecki & Marcin Waligora - 2017 - Science and Engineering Ethics 23 (1):215-225.
    In this article, we seek to contribute to the debate on the requirement of disclosure in the context of informed consent for research. We defend the subjective standard of disclosure and describe ways to implement this standard in research practice. We claim that the researcher should make an effort to find out what kinds of information are likely to be relevant for those consenting to research. This invites researchers to take empirical survey information seriously, attempt to understand the cultural context, (...)
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  • Raising Genomic Citizens: Adolescents and the Return of Secondary Genomic Findings.Maya Sabatello & Paul S. Appelbaum - 2016 - Journal of Law, Medicine and Ethics 44 (2):292-308.
    Whole genome and exome sequencing techniques raise hope for a new scale of diagnosis, prevention, and prediction of genetic conditions, and improved care for children. For these hopes to materialize, extensive genomic research with children will be needed. However, the use of WGS/WES in pediatric research settings raises considerable challenges for families, researchers, and policy development. In particular, the possibility that these techniques will generate genetic findings unrelated to the primary goal of sequencing has stirred intense debate about whether, which, (...)
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  • How Anonymous is 'Anonymous'? Some Suggestions Towards a Coherent Universal Coding System for Genetic Samples.Harald Schmidt & Shawneequa Callier - 2012 - Journal of Medical Ethics 38 (5):304-309.
    So-called ‘anonymous’ tissue samples are widely used in research. Because they lack externally identifying information, they are viewed as useful in reconciling conflicts between the control, privacy and confidentiality interests of those from whom the samples originated and the public (or commercial) interest in carrying out research, as reflected in ‘consent or anonymise’ policies. High level guidance documents suggest that withdrawal of consent and samples and the provision of feedback are impossible in the case of anonymous samples. In view of (...)
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  • Genetic Research Using Archival Tissue: Ethical, Social, and Legal Considerations in the United Arab Emirates.Saeeda Almarzooqi & Carol Campbell - 2018 - Asian Bioethics Review 10 (3):219-230.
    Pathological archival tissue has been used as a source of research material for many years. The advancement in molecular techniques led to an escalated interest in genetic research on archival tissue. Research on archival tissue has been used without obtaining consents from patients, although the ethical justification for such a practice is unlikely to apply for genetic research that involves whole genome sequencing, for instance. Issues of confidentiality and patients’ autonomy are being raised as institutions consider when approval for this (...)
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  • Does Consent Bias Research?Mark A. Rothstein & Abigail B. Shoben - 2013 - American Journal of Bioethics 13 (4):27 - 37.
    Researchers increasingly rely on large data sets of health information, often linked with biological specimens. In recent years, the argument has been made that obtaining informed consent for conducting records-based research is unduly burdensome and results in ?consent bias.? As a type of selection bias, consent bias is said to exist when the group giving researchers access to their data differs from the group denying access. Therefore, to promote socially beneficial research, it is argued that consent should be unnecessary. After (...)
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  • Between Minimal and Greater Than Minimal Risk: How Research Participants and Oncologists Assess Data-Sharing and the Risk of Re-Identification in Genomic Research.Sebastian Schleidgen, Alma Husedzinovic, Dominik Ose, Christoph Schickhardt, Christof von Kalle & Eva C. Winkler - 2019 - Philosophy and Technology 32 (1):39-55.
    Data-sharing among genomic researchers is promoted for its potential to accelerate our understanding of the molecular basis of cancer. However, with genomic data sharing the risks of re-identifying study participants, revealing personal genomic information and data misuse might increase. This study aims at exploring perceptions of patients and physicians in Oncology regarding their assessment of the informational risks resulting from participating in whole genomic research studies in order to improve the informed consent process. For this purpose, we conducted a qualitative (...)
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  • Is Deidentification Sufficient to Protect Health Privacy in Research?Mark A. Rothstein - 2010 - American Journal of Bioethics 10 (9):3-11.
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  • Ethics as an Act of Listening.Wendy Lipworth, Bronwen Morrell & Ian Kerridge - 2008 - American Journal of Bioethics 8 (10):80-81.
  • Identifiability of DNA Data: The Need for Consistent Federal Policy.Amy L. McGuire - 2008 - American Journal of Bioethics 8 (10):75-76.
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  • Genomic Anonymity: Have We Already Lost It?Dov Greenbaum, Jiang Du & Mark Gerstein - 2008 - American Journal of Bioethics 8 (10):71-74.
  • Perspectives of Decisional Surrogates and Patients Regarding Critical Illness Genetic Research.Bradley D. Freeman, Dragana Bolcic-Jankovic, Carie R. Kennedy, Jessica LeBlanc, Alexander Eastman, Jennifer Barillas, Catherine M. Wittgen, Kathryn Lindsey, Rumel S. Mahmood & Brian R. Clarridge - 2016 - Ajob Empirical Bioethics 7 (1):39-47.
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  • Does Experience Matter? Implications for Community Consultation for Research in Emergency Settings.Victoria M. Scicluna, Mohammed K. Ali, Rebecca D. Pentz, David W. Wright & Neal W. Dickert - 2017 - Ajob Empirical Bioethics 8 (2):75-81.
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  • Respecting Donors to Biobank Research.Tom Tomlinson - 2013 - Hastings Center Report 43 (1):41-47.
  • 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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  • Managing Patient Expectations About Deidentification.Harald Schmidt & Shawneequa L. Callier - 2010 - American Journal of Bioethics 10 (9):21-23.
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  • A Survey of Scientist and Policy Makers' Attitudes Toward Research on Stored Human Biological Materials in Sri Lanka.Vajira H. W. Dissanayake, Dulika S. Sumathipala, U. G. A. C. Kariyawasam, J. M. D. N. M. M. Jayamanne, P. K. D. S. Nisansala & Reidar Lie - 2015 - Developing World Bioethics 15 (3):226-232.
    Introduction Stored human samples and the establishment of biobanks are increasing in the world. Along with this there are the questions of ethics that arise such as the correct method of obtaining informed consent for research on stored samples and the policies involved in collaborative research using collected samples. This study is an attempt to evaluate the researchers, academics and policy makers' views on these ethical aspects. Methods This was an anonymised study involving a Sri Lankan population of researchers, ethics (...)
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  • Directives for Retained DNA: Preferences of Adolescent Patients with Substance and Conduct Problems and Their Siblings.Marilyn Coors, Susan Mikulich-Gilbertson, Kristen Raymond, Shannon Stover, Thomas Crowley, Sandra Brown & Susan Tapert - 2008 - American Journal of Bioethics 8 (10):77-79.