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Nina Hallowell [21]N. Hallowell [7]
  1.  33
    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.  17
    Broadening the Debate About Post-Trial Access to Medical Interventions: A Qualitative Study of Participant Experiences at the End of a Trial Investigating a Medical Device to Support Type 1 Diabetes Self-Management.J. Lawton, M. Blackburn, D. Rankin, C. Werner, C. Farrington, R. Hovorka & N. Hallowell - 2019 - AJOB Empirical Bioethics 10 (2):100-112.
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  3.  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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  4.  5
    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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  5.  42
    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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  6.  37
    Healthcare Professionals' and Researchers' Understanding of Cancer Genetics Activities: A Qualitative Interview Study.N. Hallowell, S. Cooke, G. Crawford, M. Parker & A. Lucassen - 2009 - Journal of Medical Ethics 35 (2):113-119.
    Aims: To describe individuals’ perceptions of the activities that take place within the cancer genetics clinic, the relationships between these activities and how these relationships are sustained. Design: Qualitative interview study. Participants: Forty individuals involved in carrying out cancer genetics research in either a clinical (n = 28) or research-only (n = 12) capacity in the UK. Findings: Interviewees perceive research and clinical practice in the subspecialty of cancer genetics as interdependent. The boundary between research and clinical practice is described (...)
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  7.  4
    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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  8.  37
    Research Ethics: An Investigation of Patients’ Motivations for Their Participation in Genetics-Related Research.N. Hallowell, S. Cooke, G. Crawford, A. Lucassen & M. Parker - 2010 - Journal of Medical Ethics 36 (1):37-45.
    Design: Qualitative interview study. Participants: Fifty-nine patients with a family history of cancer who attend a regional cancer genetics clinic in the UK were interviewed about their current and previous research experiences. Findings: Interviewees gave a range of explanations for research participation. These were categorised as social—research participation benefits the wider society by progressing science and improving treatment for everyone; familial—research participation may improve healthcare and benefit current or future generations of the participant’s family; and personal—research participation provides therapeutic or (...)
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  9.  16
    Balancing Autonomy and Responsibility: The Ethics of Generating and Disclosing Genetic Information * Commentary * Author's Reply.N. Hallowell - 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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  10.  47
    Genetic Research on Rare Familial Disorders: Consent and the Blurred Boundaries Between Clinical Service and Research.M. Ponder, H. Statham, N. Hallowell, J. A. Moon, M. Richards & F. L. Raymond - 2008 - Journal of Medical Ethics 34 (9):690-694.
    Objectives: To study the consent process experienced by participants who are enrolled in a molecular genetic research study that aims to find new genetic mutations responsible for an apparently inherited disorder.Design: Semi-structured interviews and analysis/description of main themes.Participants: 78 members of 52 families who had been recruited to a molecular genetic study.Results: People were well informed about the goals, risks and benefits of the genetic research study but could not remember the consent process. They had mostly been recruited to take (...)
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  11.  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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  12.  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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  13.  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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  14.  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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  15.  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.
  16.  55
    Ethics and Research Governance: The Views of Researchers, Health-Care Professionals and Other Stakeholders.Nina Hallowell, Sarah Cooke, Gill Crawford, Michael Parker & Anneke Lucassen - 2008 - Clinical Ethics 3 (2):85-90.
    The objective of this study is to describe researchers', health-care providers' and other stakeholders' views of ethical review and research governance procedures. The study design involved qualitative semi-structured interviews. Participants included 60 individuals who either undertook research in the subspecialty of cancer genetics (n = 40) or were involved in biomedical research in other capacities (n = 20), e.g. research governance and oversight, patient support groups or research funding. While all interviewees observed that oversight is necessary to protect research participants, (...)
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  17. 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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  18. 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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  19. 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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  20. “I Don’T Think People Are Ready to Trust These Algorithms at Face Value”: Trust and the Use of Machine Learning Algorithms in the Diagnosis of Rare Disease.Angeliki Kerasidou, Christoffer Nellåker, Aurelia Sauerbrei, Shirlene Badger & Nina Hallowell - 2022 - BMC Medical Ethics 23 (1):1-14.
    BackgroundAs the use of AI becomes more pervasive, and computerised systems are used in clinical decision-making, the role of trust in, and the trustworthiness of, AI tools will need to be addressed. Using the case of computational phenotyping to support the diagnosis of rare disease in dysmorphology, this paper explores under what conditions we could place trust in medical AI tools, which employ machine learning.MethodsSemi-structured qualitative interviews with stakeholders who design and/or work with computational phenotyping systems. The method of constant (...)
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  21.  22
    What Ethical and Legal Principles Should Guide the Genotyping of Children as Part of a Personalised Screening Programme for Common Cancer?N. Hallowell, S. Chowdhury, A. E. Hall, P. Pharoah, H. Burton & N. Pashayan - 2014 - Journal of Medical Ethics 40 (3):163-167.
    Increased knowledge of the gene–disease associations contributing to common cancer development raises the prospect of population stratification by genotype and other risk factors. Individual risk assessments could be used to target interventions such as screening, treatment and health education. Genotyping neonates, infants or young children as part of a systematic programme would improve coverage and uptake, and facilitate a screening package that maximises potential benefits and minimises harms including overdiagnosis. This paper explores the potential justifications and risks of genotyping children (...)
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  22.  11
    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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  23.  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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  24.  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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  25.  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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  26.  4
    Written Versus Verbal Consent: A Qualitative Study of Stakeholder Views of Consent Procedures Used at the Time of Recruitment Into a Peripartum Trial Conducted in an Emergency Setting.J. Lawton, N. Hallowell, C. Snowdon, J. E. Norman, K. Carruthers & F. C. Denison - 2017 - BMC Medical Ethics 18 (1):36.
    Obtaining prospective written consent from women to participate in trials when they are experiencing an obstetric emergency is challenging. Alternative consent pathways, such as gaining verbal consent at enrolment followed, later, by obtaining written consent, have been advocated by some clinicians and bioethicists but have received little empirical attention. We explored women’s and staff views about the consent procedures used during the internal pilot of a trial, where the protocol permitted staff to gain verbal consent at recruitment. Interviews with staff (...)
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