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  1. The Impact of Incidental Findings Detected During Brain Imaging on Research Participants of the Rotterdam Study: An Interview Study.Charlotte H. C. Bomhof, Lisa van Bodegom, Meike W. Vernooij, Wim Pinxten, Inez D. de Beaufort & Eline M. Bunnik - 2020 - Cambridge Quarterly of Healthcare Ethics 29 (4):542-556.
    This interview study investigates the short- and long-term implications of incidental findings detected through brain imaging on research participants’ lives and their surroundings. For this study, nine participants of the Rotterdam Scan Study with an incidental finding were approached and interviewed. When examining research participants’ narratives on the impact of the disclosure of incidental findings, the authors identified five sets of tensions with regard to motivations for and expectations of research participation, preferences regarding disclosure, short- and long-term impacts and impacts (...)
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  • 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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  • 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.
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  • 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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  • 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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  • 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 (FGDs) and in-depth interviews (IDIs) with 69 stakeholders. (...)
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  • 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.
    Genomic research—including whole genome sequencing and whole exome sequencing—has a growing presence in contemporary biomedical investigation. The capacity of sequencing techniques to generate results that go beyond the primary aims of the research—historically referred to as “incidental findings”—has generated considerable discussion as to how this information should be handled—that is, whether incidental results should be returned, and if so, which ones.Federal regulations governing most human subjects research in the United States require the disclosure of “the procedures to be followed” in (...)
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  • Current Status and Future Challenges of Biobank Research in Malaysia.Latifah Amin, Angelina Olesen, Zurina Mahadi & Maznah Ibrahim - 2021 - Asian Bioethics Review 13 (3):297-315.
    The establishment of MyCohort in 2005 showed that there is a growing interest on the part of the Malaysian government in the creation of biobanks in the country. This project can be considered as the biggest and most comprehensive cohort study in Malaysia, where hundreds of thousands of human samples are stored for epidemiological and biomedical research. However, little is known about the current issues or the situation related to biobank research in Malaysia. There are pressing issues that need answers (...)
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  • To disclose, or not to disclose? Perspectives of clinical genomics professionals toward returning incidental findings from genomic research.Saleh AlGhamdi, Amani Abu-Shaheen, Mohamad Al-Tannir & Isamme AlFayyad - 2021 - BMC Medical Ethics 22 (1):1-8.
    BackgroundClinical genomic professionals are increasingly facing decisions about returning incidental findings (IFs) from genetic research. Although previous studies have shown that research participants are interested in receiving IFs, yet there has been an argument about the extent of researcher obligation to return IFs. We aimed in this study to explore the perspectives of clinical genomics professionals toward returning incidental findings from genomic research.MethodsWe conducted a national survey of a sample (n = 113) of clinical genomic professionals using a convenient sampling. (...)
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  • Are There Counterexamples to Standard Views about Institutional Legitimacy, Obligation, and What Institutions We Should Aim For?Mark Budolfson - 2014 - Philosophy and Law 14 (1).
    A standard view in legal and political theory is that, to a first approximation, (1) we should aim to bring about the most legitimate institutions possible to solve the problems that should be solved at the level of politics, and (2) individual people are required to follow the directives of legitimate institutions, at least insofar as those institutions have the authority to issue those directives, and insofar as other considerations are nearly equal.1 On this standard view, the philosophical analysis of (...)
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  • 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" (...)
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