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  1.  4
    Using Drones to Study Human Beings: Ethical and Regulatory Issues.David B. Resnik & Kevin C. Elliott - forthcoming - Science and Engineering Ethics:1-12.
    Researchers have used drones to track wildlife populations, monitor forest fires, map glaciers, and measure air pollution but have only begun to consider how to use these unmanned aerial vehicles to study human beings. The potential use of drones to study public gatherings or other human activities raises novel issues of privacy, confidentiality, and consent, which this article explores in depth. It argues that drone research could fall into several different categories: non-human subjects research, exempt HSR, or non-exempt HSR. In (...)
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  2.  7
    Challenges in Collecting Big Data in A Clinical Environment with Vulnerable Population: Lessons Learned From A Study Using A Multi-Modal Sensors Platform.Bing Ye, Shehroz S. Khan, Belkacem Chikhaoui, Andrea Iaboni, Lori Schindel Martin, Kristine Newman, Angel Wang & Alex Mihailidis - forthcoming - Science and Engineering Ethics:1-20.
    Agitation is one of the most common behavioural and psychological symptoms in people living with dementia. This behaviour can cause tremendous stress and anxiety on family caregivers and healthcare providers. Direct observation of PLwD is the traditional way to measure episodes of agitation. However, this method is subjective, bias-prone and timeconsuming. Importantly, it does not predict the onset of the agitation. Therefore, there is a need to develop a continuous monitoring system that can detect and/or predict the onset of agitation. (...)
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  3.  2
    A Social Constructivism Decision-Making Approach to Managing Incidental Findings in Neuroimaging Research.Marcie L. King - 2018 - Ethics and Behavior 28 (5):393-410.
    Functional magnetic resonance imaging is a powerful tool used in cognitive neuroscientific research. fMRI is noninvasive, safe, and relatively accessible, making it an ideal method to draw inferences about the brain–behavior relationship. When conducting fMRI research, scientists must consider risks associated with brain imaging. In particular, the risk of potentially identifying an abnormal brain finding in an fMRI research scan poses a complex problem that researchers should be prepared to address. This article illustrates how a social constructivism decision-making model can (...)
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  4.  16
    The Right to Know: A Revised Standard for Reporting Incidental Findings.G. Owen Schaefer & Julian Savulescu - 2018 - Hastings Center Report 48 (2):22-32.
    The “best-medical-interests” standard for reporting findings does not go far enough. Research subjects have a right to know about any comprehensible piece of information about them that is generated by research in which they are participating. An even broader standard may sometimes be appropriate: if subjects agree to accept information that they may not understand, then all information may be disclosed.
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  5.  2
    Incidental Findings in Low‐Resource Settings.Haley K. Sullivan & Benjamin E. Berkman - 2018 - Hastings Center Report 48 (3):20-28.
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  6.  38
    How Should We Deal with Misattributed Paternity? A Survey of Lay Public Attitudes.Georgia Lowe, Jonathan Pugh, Guy Kahane, Louise Corben, Sharon Lewis, Martin Delatycki & Julian Savulescu - 2017 - Ajob Empirical Bioethics 8 (4):234-242.
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  7.  24
    Lay Attitudes Toward Trust, Uncertainty, and the Return of Pediatric Research Results in Biobanking.John Lynch, Janelle Hines, Sarah Theodore & Monica Mitchell - 2016 - Ajob Empirical Bioethics 7 (3):160-166.
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  8.  4
    Consent to Epistemic Interventions: A Contribution to the Debate on the Right to Know.Niels Nijsingh - 2016 - Medicine, Health Care and Philosophy 19 (1):103-110.
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  9.  15
    A Room with a View of Integrity and Professionalism: Personal Reflections on Teaching Responsible Conduct of Research in the Neurosciences.Emily Bell - 2015 - Science and Engineering Ethics 21 (2):461-469.
    Neuroscientists are increasingly put into situations which demand critical reflection about the ethical and appropriate use of research tools and scientific knowledge. Students or trainees also have to know how to navigate the ethical domains of this context. At a time when neuroscience is expected to advance policy and practice outcomes, in the face of academic pressures and complex environments, the importance of scientific integrity comes into focus and with it the need for training at the graduate level in the (...)
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  10.  5
    Ethical Signposts for Clinical Geneticists in Secondary Variant and Incidental Finding Disclosure Discussions.Gabrielle M. Christenhusz, Koenraad Devriendt, Hilde Van Esch & Kris Dierickx - 2015 - Medicine, Health Care and Philosophy 18 (3):361-370.
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  11.  9
    ‘Ethical Responsibility’ or ‘a Whole Can of Worms’: Differences in Opinion on Incidental Finding Review and Disclosure in Neuroimaging Research From Focus Group Discussions with Participants, Parents, IRB Members, Investigators, Physicians and Community Members: Table 1.Caitlin Cole, Linda E. Petree, John P. Phillips, Jody M. Shoemaker, Mark Holdsworth & Deborah L. Helitzer - 2015 - Journal of Medical Ethics 41 (10):841-847.
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  12.  5
    Seeking Context for the Duty to Rescue: Contractualism and Trust in Research Institutions.Karen M. Meagher - 2015 - American Journal of Bioethics 15 (2):18-20.
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  13.  9
    Stakeholder Opinions and Ethical Perspectives Support Complete Disclosure of Incidental Findings in MRI Research.John P. Phillips, Caitlin Cole, John P. Gluck, Jody M. Shoemaker, Linda E. Petree, Deborah L. Helitzer, Ronald M. Schrader & Mark T. Holdsworth - 2015 - Ethics and Behavior 25 (4):332-350.
    How far does a researcher’s responsibility extend when an incidental finding is identified? Balancing pertinent ethical principles such as beneficence, respect for persons, and duty to rescue is not always straightforward, particularly in neuroimaging research where empirical data that might help guide decision making are lacking. We conducted a systematic survey of perceptions and preferences of 396 investigators, research participants, and Institutional Review Board members at our institution. Using the partial entrustment model as described by Richardson, we argue that our (...)
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  14.  1
    Shared Responsibility for Ensuring Appropriate Management of Incidental Findings: A Case Study From South Africa.Y. Sookrajh, S. Naidoo & G. Ramjee - 2015 - Journal of Medical Ethics 41 (3):281-283.
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  15.  12
    Models of Consent to Return of Incidental Findings in Genomic Research.Paul S. Appelbaum, Erik Parens, Cameron R. Waldman, Robert Klitzman, Abby Fyer, Josue Martinez, W. Nicholson Price & Wendy K. Chung - 2014 - Hastings Center Report 44 (4):22-32.
  16.  11
    A Framework for Analyzing the Ethics of Disclosing Genetic Research Findings.Lisa Eckstein, Jeremy R. Garrett & Benjamin E. Berkman - 2014 - Journal of Law, Medicine and Ethics 42 (2):190-207.
    Over the past decade, there has been an extensive debate about whether researchers have an obligation to disclose genetic research findings, including primary and secondary findings. There appears to be an emerging (but disputed) view that researchers have some obligation to disclose some genetic findings to some research participants. The contours of this obligation, however, remain unclear. -/- As this paper will explore, much of this confusion is definitional or conceptual in nature. The extent of a researcher’s obligation to return (...)
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  17.  21
    Recognizing the Right Not to Know: Conceptual, Professional, and Legal Implications.Graeme Laurie - 2014 - Journal of Law, Medicine and Ethics 42 (1):53-63.
    This article argues for the importance of conceptual clarity in the debate about the so-called right not to know. This is vital both at the theoretical and the practical level. It is suggested that, unlike many formulations and attempts to give effect to this right, what is at stake is not merely an aspect of personal autonomy and therefore cannot and should not be reduced only to a question of individual choice. Rather, it is argued that the core interests that (...)
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  18.  9
    Recognizing the Right Not to Know: Conceptual, Professional, and Legal Implications.Graeme Laurie - 2014 - Journal of Law, Medicine and Ethics 42 (1):53-63.
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  19.  2
    Alternatives of Informed Consent for Storage and Use of Human Biological Material for Research Purposes: Brazilian Regulation.Gabriela Marodin, Paulo Henrique Condeixa de França, Jennifer Braathen Salgueiro, Marcia Luz da Motta, Gysélle Saddi Tannous & Anibal Gil Lopes - 2014 - Developing World Bioethics 14 (3):127-131.
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  20.  10
    Conducting Research on Social Media—Is Facebook Like the Public Square?Kayhan Parsi & Nanette Elster - 2014 - American Journal of Bioethics 14 (10):63-65.
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  21.  2
    Using Diffusion Tensor Imaging to Probe Mental Status in Legal Cases: Ethical Concerns and Lessons Learned From Other Biotechnologies.Samuel K. Powell, Nehal A. Parikh & Robin N. Fiore - 2014 - American Journal of Bioethics Neuroscience 5 (2):46-47.
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  22.  17
    Ethische und rechtliche Aspekte im Umgang mit genetischen Zufallsbefunden – Herausforderungen und Lösungsansätze.Sabine Rudnik-Schöneborn, Martin Langanke, Pia Erdmann & Jürgen Robienski - 2014 - Ethik in der Medizin 26 (2):1-15.
    Mit der Vielzahl von Daten aus genetischen Untersuchungsverfahren wächst das Problem von „Zufallsbefunden“, d. h. von zufällig erhobenen Nebenbefunden, die mit der ursprünglichen Fragestellung nicht in Verbindung stehen und dennoch eine Bedeutung für Gesundheit und Reproduktionsverhalten der untersuchten Person selbst oder ihrer Anverwandten haben. In Ermangelung nationaler oder internationaler Richtlinien greifen die Autoren die aktuelle Diskussion um den Umgang mit genetischen Zufallsbefunden in Behandlungs- und Forschungskontext auf. Dabei nehmen sie auf die für Deutschland relevanten rechtlichen und ethischen Rahmenbedingungen Bezug. Nach (...)
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  23.  9
    An Implementation Framework for the Feedback of Individual Research Results and Incidental Findings in Research.Adrian Thorogood, Yann Joly, Bartha Maria Knoppers, Tommy Nilsson, Peter Metrakos, Anthoula Lazaris & Ayat Salman - 2014 - BMC Medical Ethics 15 (1):88.
    This article outlines procedures for the feedback of individual research data to participants. This feedback framework was developed in the context of a personalized medicine research project in Canada. Researchers in this domain have an ethical obligation to return individual research results and/or material incidental findings that are clinically significant, valid and actionable to participants. Communication of individual research data must proceed in an ethical and efficient manner. Feedback involves three procedural steps: assessing the health relevance of a finding, re-identifying (...)
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  24.  73
    Following the Giant’s Paces-Governance Issues and Bioethical Reflections in China.Zhaochen Wang, Vincent H. di ZhangNg, Reidar K. Lie & Xiaomei Zhai - 2014 - BMC Medical Ethics 15 (1):79.
    China has become a global player in the field of biosamples research and analysis of genetic data. The Beijing Genomics Institute is a genetics factory where enormous amounts of biosamples/data from all over the world are being analyzed. Most of the global bioethics discussions focused on research conducted by scientists from industrialized countries with subjects from poorer countries. Today, however, samples from industrialized nations are being analyzed in China on an unprecedented scale. This means that one should not just focus (...)
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  25.  16
    Do Researchers Have an Obligation to Actively Look for Genetic Incidental Findings?Catherine Gliwa & Benjamin E. Berkman - 2013 - American Journal of Bioethics 13 (2):32-42.
    The rapid growth of next-generation genetic sequencing has prompted debate about the responsibilities of researchers toward genetic incidental findings. Assuming there is a duty to disclose significant incidental findings, might there be an obligation for researchers to actively look for these findings? We present an ethical framework for analyzing whether there is a positive duty to look for genetic incidental findings. Using the ancillary care framework as a guide, we identify three main criteria that must be present to give rise (...)
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  26.  11
    Two Basic Ethical Problems of Incidental Findings in Population‐Based, Non‐Intervening Magnetic Resonance Imaging (MRI) Research.Martin Hoffmann - 2013 - Journal of Evaluation in Clinical Practice 19 (3):427-432.
  27.  11
    Incidental Findings in the Era of Whole Genome Sequencing?Erik Parens, Paul Appelbaum & Wendy Chung - 2013 - Hastings Center Report 43 (4):16-19.
  28.  9
    Teaching Health Law.Benjamin E. Berkman & Karen H. Rothenberg - 2012 - Journal of Law, Medicine and Ethics 40 (1):147-153.
  29.  10
    Teaching Health Law.Benjamin E. Berkman & Karen H. Rothenberg - 2012 - Journal of Law, Medicine and Ethics 40 (1):147-153.
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  30.  2
    Teaching Health Law: Teaching Law Students to Be Policymakers: The Health and Science Policy Workshop on Genomic Research.Benjamin E. Berkman & Karen H. Rothenberg - 2012 - Journal of Law, Medicine and Ethics 40 (1):147-153.
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  31.  20
    Critical Social Theory Approach to Disclosure of Genomic Incidental Findings.J. L. Bevan, J. N. Senn-Reeves, B. R. Inventor, S. M. Greiner, K. M. Mayer, M. T. Rivard & R. J. Hamilton - 2012 - Nursing Ethics 19 (6):819-828.
    Technology has expanded genomic research and the complexity of extracted gene-related information. Health-related genomic incidental findings pose new dilemmas for nurse researchers regarding the ethical application of disclosure to participants. Consequently, informed consent specific to incidental findings is recommended. Critical Social Theory is used as a guide in recognition of the changing meaning of informed consent and to serve as a framework to inform nursing of the ethical application of disclosure consent in genomic nursing research practices.
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  32.  23
    Alternatives of Informed Consent for Storage and Use of Human Biological Material for Research Purposes: Brazilian Regulation.Gabriela Marodin, Paulo Henrique Condeixa de França, Jennifer Braathen Salgueiro, Marcia Luz da Motta, Gysélle Saddi Tannous & Anibal Gil Lopes - 2012 - Developing World Bioethics 12 (3):127-131.
    Informed consent is recognized as a primary ethical requirement to conduct research involving humans. In the investigations with the use of human biological material, informed consent (IC) assumes a differentiated condition on account of the many future possibilities. This work presents suitable alternatives for IC regarding the storage and use of human biological material in research, according to new Brazilian regulations. Both norms – Resolution 441/11 of the National Health Council, approved on 12 May 2011, and Ordinance 2.201 (NATIONAL GUIDELINES (...)
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  33.  6
    Ethical Dimensions of Disparities in Depression Research and Treatment in the Pharmacogenomic Era.Lisa S. Parker & Valerie B. Satkoske - 2012 - Journal of Law, Medicine and Ethics 40 (4):886-903.
    Disparities in access to, and utilization of, treatment for depression among African-American and Caucasian elderly adults have been well-documented. Less fully explored are the multidimensional factors responsible for these disparities. The intersection of cultural constructs, socioeconomic factors, multiple levels of racism, and stigma attending both mental health issues and older age may help to explain disparities in the treatment of the depressed elderly. Personalized medicine with its promise of developing interventions tailored to an individual's health needs and genetically related response (...)
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  34.  3
    Ethical Dimensions of Disparities in Depression Research and Treatment in the Pharmacogenomic Era.Lisa S. Parker & Valerie B. Satkoske - 2012 - Journal of Law, Medicine and Ethics 40 (4):886-903.
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  35.  57
    A New Challenge for Research Ethics: Incidental Findings in Neuroimaging.Bert Heinrichs - 2011 - Journal of Bioethical Inquiry 8 (1):59-65.
    It has become evident that neuroimaging raises new normative questions that cannot be addressed adequately within the (in this regard unspecific) frameworks of existing research ethics. Questions that are especially troubling are, among others, provoked by incidental findings. Two questions are particularly intricate in view of incidental findings: (1) How can the research subject’s right not to know be guaranteed? And (2) should a diagnostic check of scans by a neuroradiologist become an obligatory part of neuroscientific research protocols? The present (...)
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  36.  6
    Is Multiple Authorship in Conceptual Bioethics Ethically Sustainable?D. Gareth Jones - 2011 - American Journal of Bioethics 11 (10):30 - 32.
    The American Journal of Bioethics, Volume 11, Issue 10, Page 30-32, October 2011.
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  37.  10
    INTRODUCTION: Return of Research Results: How Should Research Results Be Handled?Bartha Maria Knoppers & Emmanuelle Lévesque - 2011 - Journal of Law, Medicine and Ethics 39 (4):574-576.
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  38.  6
    INTRODUCTION: Return of Research Results: How Should Research Results Be Handled?Bartha Maria Knoppers & Emmanuelle Lévesque - 2011 - Journal of Law, Medicine and Ethics 39 (4):574-576.
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  39.  3
    Return of Research Results: How Should Research Results Be Handled?Bartha Maria Knoppers & Emmanuelle Lévesque - 2011 - Journal of Law, Medicine and Ethics 39 (4):574-576.
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  40.  10
    Return of Research Results: General Principles and International Perspectives.Emmanuelle Lévesque, Yann Joly & Jacques Simard - 2011 - Journal of Law, Medicine and Ethics 39 (4):583-592.
    Five years ago, an article co-written by two of us (Joly and Simard) presented an emerging trend to disclose certain individual genetic results to research participants. Since then, both technologies and research practices have evolved significantly. Given this rapid evolution, our goal is to provide updated and thorough guidance on this issue. Our paper begins by identifying the ethical principles that support the return of results: justice, beneficence, and respect for persons. Then, it presents the results of an analysis of (...)
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  41.  7
    Return of Research Results: General Principles and International Perspectives.Emmanuelle Lévesque, Yann Joly & Jacques Simard - 2011 - Journal of Law, Medicine and Ethics 39 (4):583-592.
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  42.  12
    Criteria for Authorship in Bioethics.David B. Resnik & Zubin Master - 2011 - American Journal of Bioethics 11 (10):17 - 21.
    Multiple authorship is becoming increasingly common in bioethics research. There are well-established criteria for authorship in empirical bioethics research but not for conceptual research. It is important to develop criteria for authorship in conceptual publications to prevent undeserved authorship and uphold standards of fairness and accountability. This article explores the issue of multiple authorship in bioethics and develops criteria for determining who should be an author on a conceptual publication in bioethics. Authorship in conceptual research should be based on contributing (...)
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  43.  3
    Biobanks and the Return of Research Results: Out with the Old and In with the New?Ma'N. H. Zawati & Amélie Rioux - 2011 - Journal of Law, Medicine and Ethics 39 (4):614-620.
    This article examines the complex and contemporary issue of the return of research results in biobanks. After suggesting the exclusion of some adjacent issues usually flanking the debate, this article reviews the current practices of biobanks on the disclosure of research results to participants. It then focuses more specifically on the debate in the literature before turning to a review of the typology of recent reforms being put forward.
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  44.  2
    Biobanks and the Return of Research Results: Out with the Old and in with the New?Ma'N. H. Zawati & Amélie Rioux - 2011 - Journal of Law, Medicine and Ethics 39 (4):614-620.
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  45.  33
    Consenting Futures: Professional Views on Social, Clinical and Ethical Aspects of Information Feedback to Embryo Donors in Human Embryonic Stem Cell Research.Kathryn Ehrich, Clare Williams & Bobbie Farsides - 2010 - Clinical Ethics 5 (2):77-85.
    This paper reports from an ongoing multidisciplinary, ethnographic study that is exploring the views, values and practices (the ethical frameworks) drawn on by professional staff in assisted conception units and stem cell laboratories in relation to embryo donation for research purposes, particularly human embryonic stem cell (hESC) research, in the UK. We focus here on the connection between possible incidental findings and the circumstances in which embryos are donated for hESC research, and report some of the uncertainties and dilemmas of (...)
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  46.  7
    The Management of Incidental Findings in Neuro-Imaging Research: Framework and Recommendations.Erica K. Rangel - 2010 - Journal of Law, Medicine and Ethics 38 (1):117-126.
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  47.  14
    The Management of Incidental Findings in Neuro-Imaging Research: Framework and Recommendations.Erica K. Rangel - 2010 - Journal of Law, Medicine and Ethics 38 (1):117-126.
    This paper addresses the question of how incidental findings in clinical research should be managed by researchers, focusing in detail on IFs discovered in neuroimaging research. It begins by engaging the larger research ethics issue of whether researchers have any obligations of clinical care to participants, and assesses the content and merits of one particular framework for answering this question, Richardson and Belsky's ancillary care model. From here the paper develops an organizational structure for integrating the ancillary care model with (...)
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  48. Empirical Analysis of Current Approaches to Incidental Findings.Frances Lawrenz & Suzanne Sobotka - 2008 - Journal of Law, Medicine and Ethics 36 (2):249-255.
    This paper presents results found through searching publicly available U.S. data sources for information about how to handle incidental fndings (IF) in human subjects research, especially in genetics and genomics research, neuroimaging research, and CT colonography research. We searched the Web sites of 14 federal agencies, 22 professional societies, and 100 universities, as well as used the search engine Google for actual consent forms that had been posted on the Internet. Our analysis of these documents showed that there is very (...)
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  49.  1
    Empirical Analysis of Current Approaches to Incidental Findings.Frances Lawrenz & Suzanne Sobotka - 2008 - Journal of Law, Medicine and Ethics 36 (2):249-255.
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  50.  14
    Incidental Findings in Human Subjects Research: What Do Investigators Owe Research Participants?Franklin G. Miller, Michelle M. Mello & Steven Joffe - 2008 - Journal of Law, Medicine and Ethics 36 (2):271-279.
    The use of brain imaging technology as a common tool of research has spawned concern and debate over how investigators should respond to incidental fndings discovered in the course of research. In this article, we argue that investigators have an obligation to respond to incidental fndings in view of their entering into a professional relationship with research participants in which they are granted privileged access to private information with potential relevance to participants' health. We discuss the scope and limits of (...)
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