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  1. Old Challenges or New Issues? Genetic Health Professionals’ Experiences Obtaining Informed Consent in Diagnostic Genomic Sequencing.Danya F. Vears, Pascal Borry, Julian Savulescu & Julian J. Koplin - 2021 - AJOB Empirical Bioethics 12 (1):12-23.
    Background While integrating genomic sequencing into clinical care carries clear medical benefits, it also raises difficult ethical questions. Compared to traditional sequencing technologies, genomic sequencing and analysis is more likely to identify unsolicited findings (UF) and variants that cannot be classified as benign or disease-causing (variants of uncertain significance; VUS). UF and VUS pose new challenges for genetic health professionals (GHPs) who are obtaining informed consent for genomic sequencing from patients.Methods We conducted semi-structured interviews with 31 GHPs across Europe, Australia (...)
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  • Old Challenges or New Issues? Genetic Health Professionals’ Experiences Obtaining Informed Consent in Diagnostic Genomic Sequencing.Danya F. Vears, Pascal Borry, Julian Savulescu & Julian J. Koplin - 2021 - AJOB Empirical Bioethics 12 (1):12-23.
    Background While integrating genomic sequencing into clinical care carries clear medical benefits, it also raises difficult ethical questions. Compared to traditional sequencing technologies, genomic sequencing and analysis is more likely to identify unsolicited findings (UF) and variants that cannot be classified as benign or disease-causing (variants of uncertain significance; VUS). UF and VUS pose new challenges for genetic health professionals (GHPs) who are obtaining informed consent for genomic sequencing from patients.Methods We conducted semi-structured interviews with 31 GHPs across Europe, Australia (...)
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  • Community Engagement in Precision Medicine Research: Organizational Practices and Their Impacts for Equity.Janet K. Shim, Nicole Foti, Emily Vasquez, Stephanie M. Fullerton, Michael Bentz, Melanie Jeske & Sandra Soo-Jin Lee - 2023 - AJOB Empirical Bioethics 14 (4):185-196.
    Background In the wake of mandates for biomedical research to increase participation by members of historically underrepresented populations, community engagement (CE) has emerged as a key intervention to help achieve this goal.Methods Using interviews, observations, and document analysis, we examine how stakeholders in precision medicine research understand and seek to put into practice ideas about who to engage, how engagement should be conducted, and what engagement is for.Results We find that ad hoc, opportunistic, and instrumental approaches to CE exacted significant (...)
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  • Beyond regulatory approaches to ethics: making space for ethical preparedness in healthcare research.Kate Lyle, Susie Weller, Gabby Samuel & Anneke M. Lucassen - 2023 - Journal of Medical Ethics 49 (5):352-356.
    Centralised, compliance-focused approaches to research ethics have been normalised in practice. In this paper, we argue that the dominance of such systems has been driven by neoliberal approaches to governance, where the focus on controlling and individualising risk has led to an overemphasis of decontextualised ethical principles and the conflation of ethical requirements with the documentation of ‘informed consent’. Using a UK-based case study, involving a point-of-care-genetic test as an illustration, we argue that rather than ensuring ethical practice such compliance-focused (...)
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  • Can and should the research–therapy distinction be maintained? Reflections in the light of innovative last-resort treatment.Gert Helgesson - 2019 - Research Ethics 15 (2):1-14.
    It has been debated for quite some time among bioethicists and others whether or not the distinction between therapy and research in healthcare can and should be maintained. This paper tries to clarify what the disagreement is about, and argues that the distinction can be maintained in most, if not all, situations. However, even if it can be maintained, it does not necessarily follow that it should. It is argued here that there are good reasons to maintain the distinction both (...)
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  • Ethical preparedness and developments in genomic healthcare.Bobbie Farsides & Anneke M. Lucassen - forthcoming - Journal of Medical Ethics.
    Considerations of the notion of preparedness have come to the fore in the recent pandemic, highlighting a need to be better prepared to deal with sudden, unexpected and unwanted events. However, the concept of preparedness is also important in relation to planned for and desired interventions resulting from healthcare innovations. We describe ethical preparedness as a necessary component for the successful delivery of novel healthcare innovations, and use recent advances in genomic healthcare as an example. We suggest that practitioners and (...)
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