Switch to: References

Add citations

You must login to add citations.
  1. Consent to Epistemic Interventions: A Contribution to the Debate on the Right (Not) to Know.Niels Nijsingh - 2016 - Medicine, Health Care and Philosophy 19 (1):103-110.
    The debate on the ‘right to know’ has simmered on for over 30 years. New examples where a right to be informed is contrasted to a right to be kept in ignorance occasionally surface and spark disagreement on the extent to which patients and research subjects have a right to be self-determining concerning the health related information they receive. Up until now, however, this debate has been unsatisfactory with regard to the question what type of rights—if any—are in play here (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   4 citations  
  • 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.
    While ethical and empirical interest in so-called secondary variants and incidental findings in clinical genetics contexts is growing, critical reflection on the ethical foundations of the various recommendations proposed is thus far largely lacking. We examine and critique the ethical justifications of the three most prominent disclosure positions: briefly, the clinical geneticist decides, a joint decision, and the patient decides. Subsequently, instead of immediately developing a new disclosure option, we explore relevant foundational ethical values and norms, drawing on the normative (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  • The Clinical Investigator-Subject Relationship: A Contextual Approach.David B. Resnik - 2009 - Philosophy, Ethics, and Humanities in Medicine 4:16-.
    BackgroundThe nature of the relationship between a clinical investigator and a research subject has generated considerable debate because the investigator occupies two distinct roles: clinician and scientist. As a clinician, the investigator has duties to provide the patient with optimal care and undivided loyalty. As a scientist, the investigator has duties to follow the rules, procedures and methods described in the protocol.Results and conclusionIn this article, I present a contextual approach to the investigator-subject relationship. The extent of the investigator's duty (...)
    Direct download (9 more)  
     
    Export citation  
     
    Bookmark   5 citations  
  • Using Drones to Study Human Beings: Ethical and Regulatory Issues.David B. Resnik & Kevin C. Elliott - 2019 - Science and Engineering Ethics 25 (3):707-718.
    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 (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark  
  • 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 (...)
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   9 citations  
  • Looking for Trouble: Preventive Genomic Sequencing in the General Population and the Role of Patient Choice.Gabriel Lázaro-Muñoz, John M. Conley, Arlene M. Davis, Marcia Van Riper, Rebecca L. Walker & Eric T. Juengst - 2015 - American Journal of Bioethics 15 (7):3-14.
    Advances in genomics have led to calls for developing population-based preventive genomic sequencing programs with the goal of identifying genetic health risks in adults without known risk factors. One critical issue for minimizing the harms and maximizing the benefits of PGS is determining the kind and degree of control individuals should have over the generation, use, and handling of their genomic information. In this article we examine whether PGS programs should offer individuals the opportunity to selectively opt out of the (...)
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   14 citations  
  • Genomanalysen als Informationseingriff. Ethische, juristische und ökonomische Analysen zum prädiktiven Potential der Genomsequenzierung.Klaus Tanner, Paul Kirchhof, Matthias von der Schulenburg, Rüdiger Wolfrum, Gösta Gantner, Fruzsina Molnár-Gábor, Martin Frank & Plöthner Marika - 2016 - Heidelberg, Deutschland: Winter Universitätsverlag.
    Durch genomweite Analysen werden vielfältige gesundheitsrelevante Informationen über eine Person gewonnen. Solche Informationen können die Behandlung von Krankheiten verbessern. Sie ermöglichen aber auch Vorhersagen, ob eine Person und deren Verwandte in Zukunft möglicherweise erkranken werden. Der neuartige Charakter des Informationseingriffs und sein prädiktive Potential bedürfen der ethischen, juristischen und ökonomischen Reflexion, damit diese Technologie zum Wohl der Patienten, der Familienangehörigen und der Solidargemeinschaft eingesetzt werden kann. Die vorliegende Schrift leistet mit ihren interdisziplinären, vom BMBF finanzierten Analysen dazu einen Beitrag. Grundlagen (...)
    Direct download (2 more)  
    Translate
     
     
    Export citation  
     
    Bookmark  
  • 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.
  • 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.
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark  
  • Think Pragmatically: Investigators’ Obligations to Patient-Subjects When Research is Embedded in Care.Stephanie Morain & Emily Largent - forthcoming - American Journal of Bioethics:1-12.
    Growing interest in embedded research approaches—where research is incorporated into clinical care—has spurred numerous studies to generate knowledge relevant to the real-world needs of patients an...
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark  
  • Incidental Findings in the Era of Whole Genome Sequencing?Erik Parens, Paul Appelbaum & Wendy Chung - 2013 - Hastings Center Report 43 (4):16-19.
  • 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.
  • Incidental Findings in Low‐Resource Settings.Haley K. Sullivan & Benjamin E. Berkman - 2018 - Hastings Center Report 48 (3):20-28.
    Direct download  
     
    Export citation  
     
    Bookmark   8 citations  
  • 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.
    Direct download  
     
    Export citation  
     
    Bookmark   5 citations  
  • 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 (...)
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   4 citations  
  • Perspectives on Returning Individual and Aggregate Genomic Research Results to Study Participants and Communities in Kenya: A Qualitative Study.Gershim Asiki, Michele Ramsay, Anita Ghansah, Paulina Tindana, Catherine Kyobutungi, Shukri F. Mohamed & Isaac Kisiangani - 2022 - BMC Medical Ethics 23 (1):1-11.
    BackgroundA fundamental ethical challenge in conducting genomics research is the question of what and how individual level genetic findings and aggregate genomic results should be conveyed to research participants and communities. This is within the context of minimal guidance, policies, and experiences, particularly in Africa. The aim of this study was to explore the perspectives of key stakeholders' on returning genomics research results to participants in Kenya.MethodsThis qualitative study involved focus group discussions and in-depth interviews with 69 stakeholders. The purposively (...)
    No categories
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark  
  • Ethische Und Rechtliche Aspekte Im Umgang MIT Genetischen Zufallsbefunden – Herausforderungen Und LösungsansätzeEthical and Legal Issues When Dealing with Genetic Incidental Findings—Challenges and Possible Solutions.Sabine Rudnik-Schöneborn, Martin Langanke, Pia Erdmann & Jürgen Robienski - 2014 - Ethik in der Medizin 26 (2):105-119.
    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 (...)
    No categories
    Direct download (3 more)  
    Translate
     
     
    Export citation  
     
    Bookmark   1 citation  
  • 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 (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   12 citations  
  • Overseeing Innovative Therapy Without Mistaking It for Research: A Function-Based Model Based on Old Truths, New Capacities, and Lessons From Stem Cells.Patrick L. Taylor - 2010 - Journal of Law, Medicine and Ethics 38 (2):286-302.
    Should innovative therapy occur only within a research paradigm and under institutional review board oversight? The health risks from current human embryonic stem cell clinical applications have raised again a fundamental question addressed first in papers submitted to inform the writing of the Belmont Report. Revisiting the thinking underlying the Belmont Report, together with examining changed circumstances since then, leads to a new model for overseeing innovative therapy based on its unique risks and context, important changes since the Belmont Report, (...)
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   8 citations  
  • Biobanking and Privacy Law in Brazil.Sueli Gandolfi Dallari, Felipe Angel Bocchi Castellaro & Iara Coelho Zito Guerriero - 2015 - Journal of Law, Medicine and Ethics 43 (4):714-725.
    Recent scientific and technological developments have promoted the emergence of biobanks on a population scale. Although the storage of human biological material has taken place for a long time, it is only recently that biobanks have acquired a broader scientific significance, especially for genomic research. The increase in biobanks creates many ethical dilemmas, such as the protection of privacy, and creates the need for a new regulatory framework, which must enable the sustainable development of biobanks while also protecting the rights (...)
    No categories
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark  
  • 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 (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark  
  • 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 (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  • Return of Genetic Research Results to Participants and Families: IRB Perspectives and Roles.Laura M. Beskow & P. Pearl O'Rourke - 2015 - Journal of Law, Medicine and Ethics 43 (3):502-513.
    We surveyed IRB chairs' perspectives on offering individual genetic research results to participants and families, including family members of deceased participants, and the IRB's role in addressing these issues. Given a particular hypothetical scenario, respondents favored offering results to participants but not family members, giving choices at the time of initial consent, and honoring elicited choices. They felt IRBs should have authority regarding the process issues, but a more limited role in medical and scientific issues.
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   2 citations  
  • Returning a Research Participant's Genomic Results to Relatives: Perspectives From Managers of Two Distinct Research Biobanks.Gloria M. Petersen & Brian Van Ness - 2015 - Journal of Law, Medicine and Ethics 43 (3):523-528.
    Research biobanks are heterogeneous and exist to manage diverse biosample types with the goal of facilitating and serving biomedical discovery. The perspectives of biobank managers are reviewed, and the perspectives of two biobank directors, one with experience in institutional biobanks and the other with national cooperative group banks, are presented. Most research biobanks are not designed, nor do they have the resources, to return research results and incidental findings to participants or their families.
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark  
  • Considering Actionability at the Participant's Research Setting Level for Anticipatable Incidental Findings From Clinical Research.Alberto Ortiz-Osorno, Linda A. Ehler & Judith Brooks - 2015 - Journal of Law, Medicine and Ethics 43 (3):619-632.
    Determining what constitutes an anticipatable incidental finding from clinical research and defining whether, and when, this IF should be returned to the participant have been topics of discussion in the field of human subject protections for the last 10 years. It has been debated that implementing a comprehensive IF-approach that addresses both the responsibility of researchers to return IFs and the expectation of participants to receive them can be logistically challenging. IFs have been debated at different levels, such as the (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   4 citations  
  • Mapping the Ethics of Translational Genomics: Situating Return of Results and Navigating the Research‐Clinical Divide.Susan M. Wolf, Wylie Burke & Barbara A. Koenig - 2015 - Journal of Law, Medicine and Ethics 43 (3):486-501.
    Both bioethics and law have governed human genomics by distinguishing research from clinical practice. Yet the rise of translational genomics now makes this traditional dichotomy inadequate. This paper pioneers a new approach to the ethics of translational genomics. It maps the full range of ethical approaches needed, proposes a “layered” approach to determining the ethics framework for projects combining research and clinical care, and clarifies the key role that return of results can play in advancing translation.
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   3 citations  
  • INTRODUCTION: Return of Research Results: What About the Family?Susan M. Wolf - 2015 - Journal of Law, Medicine and Ethics 43 (3):437-439.
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  • 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 (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   14 citations  
  • 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.
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  • Ethischer Diskurs zu Epigenetik und Genomeditierung: die Gefahr eines (epi-)genetischen Determinismus und naturwissenschaftlich strittiger Grundannahmen.Karla Karoline Sonne Kalinka Alex & Eva C. Winkler - 2021 - In Boris Fehse, Ferdinand Hucho, Sina Bartfeld, Stephan Clemens, Tobias Erb, Heiner Fangerau, Jürgen Hampel, Martin Korte, Lilian Marx-Stölting, Stefan Mundlos, Angela Osterheider, Anja Pichl, Jens Reich, Hannah Schickl, Silke Schicktanz, Jochen Taupitz, Jörn Walter, Eva Winkler & Martin Zenke (eds.), Fünfter Gentechnologiebericht: Sachstand und Perspektiven für Forschung und Anwendung. Baden-Baden, Deutschland.: Nomos. DOI: 10.5771/9783748927242. pp. 299-323.
    Slightly modified excerpt from the section 13.4 Zusammenfassung und Ausblick (translated into englisch): This chapter is based on an analysis of ethical debates on epigenetics and genome editing, debates, in which ethical arguments relating to future generations and justice play a central role. The analysis aims to contextualize new developments in genetic engineering, such as genome and epigenome editing, ethically. At the beginning, the assumptions of "genetic determinism," on which "genetic essentialism" is based, of "epigenetic determinism" as well as "genetic" (...)
    Direct download (2 more)  
    Translate
     
     
    Export citation  
     
    Bookmark  
  • 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.
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  • 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.
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  • Shining a Light Also Casts a Shadow: Neuroimaging Incidental Findings in Neuromarketing Research.Owen M. Bradfield - 2021 - Neuroethics 14 (3):459-465.
    Rapid growth in structural and functional brain research has led to increasing ethical discussion of what to do about incidental findings within the brains of healthy neuroimaging research participants that have potential health importance, but which are beyond the original aims of the study. This dilemma has been widely debated with respect to general neuroimaging research but has attracted little attention in the context of neuromarketing studies. In this paper, I argue that neuromarketing researchers owe participants the same ethical obligations (...)
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   2 citations  
  • 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.
    Direct download  
     
    Export citation  
     
    Bookmark   1 citation  
  • From Genetics to Genomics: Facing the Liability Implications in Clinical Care.Gary Marchant, Mark Barnes, James P. Evans, Bonnie LeRoy & Susan M. Wolf - 2020 - Journal of Law, Medicine and Ethics 48 (1):11-43.
    Health care is transitioning from genetics to genomics, in which single-gene testing for diagnosis is being replaced by multi-gene panels, genome-wide sequencing, and other multi-genic tests for disease diagnosis, prediction, prognosis, and treatment. This health care transition is spurring a new set of increased or novel liability risks for health care providers and test laboratories. This article describes this transition in both medical care and liability, and addresses 11 areas of potential increased or novel liability risk, offering recommendations to both (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   4 citations  
  • How Can Law and Policy Advance Quality in Genomic Analysis and Interpretation for Clinical Care?Barbara J. Evans, Gail Javitt, Ralph Hall, Megan Robertson, Pilar Ossorio, Susan M. Wolf, Thomas Morgan & Ellen Wright Clayton - 2020 - Journal of Law, Medicine and Ethics 48 (1):44-68.
    Delivering high quality genomics-informed care to patients requires accurate test results whose clinical implications are understood. While other actors, including state agencies, professional organizations, and clinicians, are involved, this article focuses on the extent to which the federal agencies that play the most prominent roles — the Centers for Medicare and Medicaid Services enforcing CLIA and the FDA — effectively ensure that these elements are met and concludes by suggesting possible ways to improve their oversight of genomic testing.
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   5 citations  
  • Return of Results in Participant-Driven Research: Learning From Transformative Research Models.Susan M. Wolf - 2020 - Journal of Law, Medicine and Ethics 48 (S1):159-166.
    Participant-driven research is a burgeoning domain of research innovation, often facilitated by mobile technologies. Return of results and data are common hallmarks, grounded in transparency and data democracy. PDR has much to teach traditional research about these practices and successful engagement. Recommendations calling for new state laws governing research with mHealth modalities common in PDR and federal creation of review mechanisms, threaten to stifle valuable participant-driven innovation, including in return of results.
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   2 citations  
  • Management of Incidental Findings From Genetic Tests: Perspectives of Ethics Committee Members.Leigh Jackson Lesley Goldsmith - 2015 - Journal of Clinical Research and Bioethics 6 (3).
    Direct download  
     
    Export citation  
     
    Bookmark  
  • 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 some of us presented an emerging trend to disclose some individual genetic results to research participants within the international research community. At the time, ethical norms and scholarly publications on the return of results often did not distinguish between the return of research results in general and the return of unexpected results. Both technologies and research practices have evolved significantly. Today whole genome and exome sequencing are increasingly affordable and frequently used in genetic (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   3 citations  
  • 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.
    In 2009, Time magazine named “biobanks” as one of the 10 ideas changing the world. These organized collections of human biological material and associated data have been identified as “vital research tools in the drive to uncover the consequences of human health and disease.” Since their inception, however, biobanks have faced ethical and legal challenges. Whether these pertain to informed consent, access by researchers, commercialization, confidentiality, or governance, biobanks must continue to address jurisdictional matters, operational difficulties, and normative frameworks that (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  • 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 (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  • 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.
    With improved diagnostic capability and accuracy, the fields of medicine, neuroscience, psychiatry, and psychology have benefitted remarkably from the dramatic advancements in neuroimaging technology. Not only can surface and subsurface structures of the brain be mapped with incredible anatomical detail, now neural activity can be imaged across time as the brain responds to different stimuli. These sophisticated techniques have been a vital element in the recent increase in neuroimaging-based research. This increase, while producing new diagnostic techniques and improved treatment mechanisms (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  • 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 (...)
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   2 citations  
  • Overseeing Innovative Therapy Without Mistaking It for Research: A Function-Based Model Based on Old Truths, New Capacities, and Lessons From Stem Cells.Patrick L. Taylor - 2010 - Journal of Law, Medicine and Ethics 38 (2):286-302.
    Innovative therapy is the name we give to novel medical interventions, radically different from the standard of care, provided in order to benefit a patient, rather than to acquire new knowledge. They are paradigmshifting, not incremental, responses to serious patient problems that standard medical care inadequately addresses. Innovative therapies are often devised by clinicians, not basic science researchers; they do not follow the linear model of basic research, to translation, to clinical research, to application. Instead, they come from thinking backwards (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   7 citations  
  • A Just Standard: The Ethical Management of Incidental Findings in Brain Imaging Research.Mackenzie Graham, Nina Hallowell & Julian Savulescu - 2021 - Journal of Law, Medicine and Ethics 49 (2):269-281.
    Neuroimaging research regularly yields “incidental findings”: observations of potential clinical significance in healthy volunteers or patients, but which are unrelated to the purpose or variables of the study.
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  • Grey Matter – The Problems of Incidental Findings in Neuroimaging Research.Nicholas Murphy & Charles Weijer - 2021 - Journal of Law, Medicine and Ethics 49 (2):282-284.
  • Why genomics researchers are sometimes morally required to hunt for secondary findings.Julian J. Koplin, Julian Savulescu & Danya F. Vears - 2020 - BMC Medical Ethics 21 (1):1-11.
    Genomic research can reveal ‘unsolicited’ or ‘incidental’ findings that are of potential health or reproductive significance to participants. It is widely thought that researchers have a moral obligation, grounded in the duty of easy rescue, to return certain kinds of unsolicited findings to research participants. It is less widely thought that researchers have a moral obligation to actively look for health-related findings. This paper examines whether there is a moral obligation, grounded in the duty of easy rescue, to actively hunt (...)
    Direct download (4 more)  
    Translate
     
     
    Export citation  
     
    Bookmark   3 citations  
  • The Continuing Evolution of Ethical Standards for Genomic Sequencing in Clinical Care: Restoring Patient Choice.Susan M. Wolf - 2017 - Journal of Law, Medicine and Ethics 45 (3):333-340.
    Developing ethical standards for clinical use of large-scale genome and exome sequencing has proven challenging, in part due to the inevitability of incidental or secondary findings. Policy of the American College of Medical Genetics and Genomics has evolved but remains problematic. In 2013, ACMG issued policy recommending mandatory analysis of 56 extra genes whenever sequencing was ordered for any indication, in order to ascertain positive findings in pathogenic and actionable genes. Widespread objection yielded a 2014 amendment allowing patients to opt-out (...)
    No categories
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   3 citations  
  • Incidental Findings and Ancillary-Care Obligations.Henry S. Richardson - 2008 - Journal of Law, Medicine and Ethics 36 (2):256-270.
    This paper explores the convergence of two recent and growing streams of bioethical work and concern. Each has originated independently, but each arises from the fact that the Common Rule that has shaped medical research ethics, as institutionalized in the United States and also abroad, is largely silent about what needs to be done in response to researchers’ positive obligations. One stream concerns what to do about the sometimes vast range of findings that may arise incidentally to performing research procedures. (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   25 citations  
  • Incidental Findings and Ancillary-Care Obligations.Henry S. Richardson - 2008 - Journal of Law, Medicine and Ethics 36 (2):256-270.
    Recent work on incidental fndings, concentrating on the difcult problems posed by the ambiguous results often generated by high-tech medicine, has proceeded largely independently from recent work on medical researchers' ancillary-care obligations, the obligations that researchers have to deal with diseases or conditions besides the one(s) under study. This paper contends that the two topics are morally linked, and specifcally that a sound understanding of ancillary-care obligations will center them on incidental fndings. The paper sets out and defends an understanding (...)
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   26 citations