17 found
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  1.  28
    COVID-19 and Contact Tracing Apps: Ethical Challenges for a Social Experiment on a Global Scale.Federica Lucivero, Nina Hallowell, Stephanie Johnson, Barbara Prainsack, Gabrielle Samuel & Tamar Sharon - 2020 - Journal of Bioethical Inquiry 17 (4):835-839.
    Mobile applications are increasingly regarded as important tools for an integrated strategy of infection containment in post-lockdown societies around the globe. This paper discusses a number of questions that should be addressed when assessing the ethical challenges of mobile applications for digital contact-tracing of COVID-19: Which safeguards should be designed in the technology? Who should access data? What is a legitimate role for “Big Tech” companies in the development and implementation of these systems? How should cultural and behavioural issues be (...)
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  2.  11
    If you build it, they will come: unintended future uses of organised health data collections.Kieran C. O’Doherty, Emily Christofides, Jeffery Yen, Heidi Beate Bentzen, Wylie Burke, Nina Hallowell, Barbara A. Koenig & Donald J. Willison - 2016 - BMC Medical Ethics 17 (1):54.
    Health research increasingly relies on organized collections of health data and biological samples. There are many types of sample and data collections that are used for health research, though these are collected for many purposes, not all of which are health-related. These collections exist under different jurisdictional and regulatory arrangements and include: 1) Population biobanks, cohort studies, and genome databases 2) Clinical and public health data 3) Direct-to-consumer genetic testing 4) Social media 5) Fitness trackers, health apps, and biometric data (...)
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  3.  41
    Balancing Autonomy and Responsibility: The Ethics of Generating and Disclosing Genetic Information.Nina Hallowell, Claire Foster, Ros Eeles, A. Ardern-Jones, Veronica Murday & Maggie Watson - 2003 - Journal of Medical Ethics 29 (2):74-79.
    Using data obtained during a retrospective interview study of 30 women who had undergone genetic testing—BRCA1/2 mutation searching—this paper describes how women, previously diagnosed with breast/ovarian cancer, perceive their role in generating genetic information about themselves and their families. It observes that when describing their motivations for undergoing DNA testing and their experiences of disclosing genetic information within the family these women provide care based ethical justifications for their actions. Finally, it argues that generating genetic information and disclosing this information (...)
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  4.  2
    Digital/Computational Phenotyping: What Are the Differences in the Science and the Ethics?Nina Hallowell & Federica Lucivero - 2021 - Big Data and Society 8 (2).
    The concept of ‘digital phenotyping’ was originally developed by researchers in the mental health field, but it has travelled to other disciplines and areas. This commentary draws upon our experiences of working in two scientific projects that are based at the University of Oxford’s Big Data Institute – The RADAR-AD project and The Minerva Initiative – which are developing algorithmic phenotyping technologies. We describe and analyse the concepts of digital biomarkers and computational phenotyping that underlie these projects, explain how they (...)
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  5.  2
    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.
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  6.  11
    Encounters with Medical Professionals: A Crisis of Trust or Matter of Respect? [REVIEW]Nina Hallowell - 2008 - Medicine, Health Care and Philosophy 11 (4):427-437.
    In this paper I shed light on the connection between respect, trust and patients’ satisfaction with their medical care. Using data collected in interviews with 49 women who had managed, or were in the process of managing, their risk of ovarian cancer using prophylactic surgery or ovarian screening, I examine their reported dissatisfaction with medical encounters. I argue that although many study participants appeared to mistrust their healthcare professionals’ (HCPs) motives or knowledge base, their dissatisfaction arose not from a lack (...)
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  7.  22
    Recall of Participation in Research Projects in Cancer Genetics: Some Implications for Research Ethics.Sarah Cooke, Gillian Crawford, Michael Parker, Anneke Lucassen & Nina Hallowell - 2008 - Clinical Ethics 3 (4):180-184.
    The aim of this study is to assess patients' recall of their previous research participation. Recall was established during interviews and compared with entries from clinical notes. Participants were 49 patients who had previously participated in different types of research. Of the 49 patients, 45 (92%) interviewees recalled 69 of 109 (63%) study participations. Level of recall varied according to the type of research, some participants clearly recalled the details of research aims, giving consent and research procedures. Others recalled procedures (...)
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  8.  7
    Therapeutic Appropriation: A New Concept in the Ethics of Clinical Research.Rosalind McDougall, Dominique Martin, Lynn Gillam, Nina Hallowell, Alison Brookes & Marilys Guillemin - 2016 - Journal of Medical Ethics 42 (12):805-808.
    Ethical concerns about therapeutic misconception have been raised since the early 1980s. This concept was originally described as research participants' assumptions that decisions relating to research interventions are made on the basis of their individual therapeutic needs. The term has since been used to refer to a range of ‘misunderstandings’ that research participants may have. In this paper, we describe a new concept—therapeutic appropriation. Therapeutic appropriation occurs when patients, or clinicians, actively reframe research participation as an opportunity to enhance patients' (...)
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  9. Governing AI-Driven Health Research: Are IRBs Up to the Task?Phoebe Friesen, Rachel Douglas-Jones, Mason Marks, Robin Pierce, Katherine Fletcher, Abhishek Mishra, Jessica Lorimer, Carissa Véliz, Nina Hallowell, Mackenzie Graham, Mei Sum Chan, Huw Davies & Taj Sallamuddin - 2021 - Ethics and Human Research 2 (43):35-42.
    Many are calling for concrete mechanisms of oversight for health research involving artificial intelligence (AI). In response, institutional review boards (IRBs) are being turned to as a familiar model of governance. Here, we examine the IRB model as a form of ethics oversight for health research that uses AI. We consider the model's origins, analyze the challenges IRBs are facing in the contexts of both industry and academia, and offer concrete recommendations for how these committees might be adapted in order (...)
     
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  10. Consent to Genetic Testing: A Family Affair?Nina Hallowell - 2009 - In Oonagh Corrigan, John McMillan, Kathleen Liddell, Martin Richards & Charles Weijer (eds.), The Limits of Consent: A Socio-Ethical Approach to Human Subject Research in Medicine. Oxford University Press.
     
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  11.  17
    Revealing the Results of Whole-Genome Sequencing and Whole-Exome Sequencing in Research and Clinical Investigations: Some Ethical Issues: Table 1.Nina Hallowell, Alison Hall, Corinna Alberg & Ron Zimmern - 2015 - Journal of Medical Ethics 41 (4):317-321.
  12.  2
    AIgorithmic Ethics: A Technically Sweet Solution to a Non-Problem.Aurelia Sauerbrei, Nina Hallowell & Angeliki Kerasidou - 2022 - American Journal of Bioethics 22 (7):28-30.
    In their proof-of-concept study, Meier et al. built an algorithm to aid ethical decision making. In the limitations section of their paper, the authors state a frequently cited ax...
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  13. Is Consent Sufficient? - a Case Study of Qualitative Research with Men with Intellectual Disabilities.Margaret Ponder, Helen Statham, Nina Hallowell & Martin Richards - 2009 - In Oonagh Corrigan, John McMillan, Kathleen Liddell, Martin Richards & Charles Weijer (eds.), The Limits of Consent: A Socio-Ethical Approach to Human Subject Research in Medicine. Oxford University Press.
     
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  14.  10
    Research or Clinical Care: What’s the Difference?Nina Hallowell - 2018 - Journal of Medical Ethics 44 (6):359-360.
    In 1979 the National Commission for the Protection of Human Subjects of Biomedical and Behavioural Research in the US delivered a set of guidelines for the ethical conduct of research on human research subjects.1 In developing these guidelines, subsequently known as The Belmont Report, the Commission was “...directed to consider: the boundaries between biomedical and behavioural research and the accepted and routine practice of medicine”; and outline a set of ethical principles which would specifically govern research activities. The Report notes (...)
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  15.  5
    Taking It to the Bank: The Ethical Management of Individual Findings Arising in Secondary Research.Mackenzie Graham, Nina Hallowell, Berge Solberg, Ari Haukkala, Joanne Holliday, Angeliki Kerasidou, Thomas Littlejohns, Elizabeth Ormondroyd, John-Arne Skolbekken & Marleena Vornanen - 2021 - Journal of Medical Ethics 47 (10):689-696.
    A rapidly growing proportion of health research uses ‘secondary data’: data used for purposes other than those for which it was originally collected. Do researchers using secondary data have an obligation to disclose individual research findings to participants? While the importance of this question has been duly recognised in the context of primary research, it remains largely unexamined in the context of research using secondary data. In this paper, we critically examine the arguments for a moral obligation to disclose individual (...)
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  16.  7
    Primary Care Physicians' Views About Gatekeeping in Clinical Research Recruitment: A Qualitative Study.Marilys Guillemin, Rosalind McDougall, Dominique Martin, Nina Hallowell, Alison Brookes & Lynn Gillam - 2017 - Ajob Empirical Bioethics 8 (2):99-105.
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  17.  11
    Seeking Ethical Approval: Opening Up the Lines of Communication.Nina Hallowell & Julia Lawton - 2006 - Clinical Ethics 1 (2):109-113.
    This paper attempts to open debate about the nature of and need for ethical review of health-related social science research. Drawing upon personal experience and anecdotal reports we describe some of the problems social scientists and ethics committee members may encounter when social science research is reviewed by Multicentre and Local Research Ethics Committees. We argue that the boundary between research methods and ethics is ambiguous and flexible, and that ethics therefore permeates research at all levels from the construction of (...)
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