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  1. Book ; Online ; E-Book: Clinical research involving pregnant women

    Baylis, Françoise / Ballantyne, Angela

    (Research ethics forum ; volume 3)

    2016  

    Author's details Françoise Baylis, Angela Ballantyne, editors
    Series title Research ethics forum ; volume 3
    Collection
    Keywords Pregnant women / Research ; Medicine / Research ; Research / Moral and ethical aspects
    Language English
    Size 1 Online-Rssource (xv, 301 Seiten), Diagramme, 24 cm
    Publisher Springer
    Publishing place Cham
    Publishing country Switzerland
    Document type Book ; Online ; E-Book
    Remark Zugriff für angemeldete ZB MED-Nutzerinnen und -Nutzer
    HBZ-ID HT019240582
    ISBN 978-3-319-26512-4 ; 9783319265100 ; 3-319-26512-1 ; 3319265105
    Database ZB MED Catalogue: Medicine, Health, Nutrition, Environment, Agriculture

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  2. Article ; Online: How should we think about clinical data ownership?

    Ballantyne, Angela

    Journal of medical ethics

    2020  Volume 46, Issue 5, Page(s) 289–294

    Abstract: The concept of 'ownership' is increasingly central to debates, in the media, health policy and bioethics, about the appropriate management of clinical data. I argue that the language of ownership acts as a metaphor and reflects multiple concerns about ... ...

    Abstract The concept of 'ownership' is increasingly central to debates, in the media, health policy and bioethics, about the appropriate management of clinical data. I argue that the language of ownership acts as a metaphor and reflects multiple concerns about current data use and the disenfranchisement of citizens and collectives in the existing data ecosystem. But exactly which core interests and concerns ownership claims allude to remains opaque. Too often, we jump straight from 'ownership' to 'private property' and conclude 'the data belongs to the patient'. I will argue here that private property is only one type of relevant relationship between people, communities and data. There are several reasons to doubt that conceptualising data as private property presents a compelling response to concerns about clinical data ownership. In particular I argue that clinical data are co-constructed, so a property account would fail to confer exclusive rights to the patient. A non-property account of ownership acknowledges that the data are 'about the patient', and therefore the patient has relevant interests, without jumping to the conclusion that the data 'belongs to the patient'. On this broader account of ownership, the relevant harm is the severing of the connection between the patient and their data, and the solution is to re-engage and re-connect patients to the data research enterprise.
    MeSH term(s) Bioethics ; Ecosystem ; Humans ; Ownership
    Language English
    Publishing date 2020-01-07
    Publishing country England
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 194927-5
    ISSN 1473-4257 ; 0306-6800
    ISSN (online) 1473-4257
    ISSN 0306-6800
    DOI 10.1136/medethics-2018-105340
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  3. Article ; Online: Blowing the whistle on mixed gender hospital rooms in Australia and New Zealand: a human rights issue.

    Towns, Cindy / Ballantyne, Angela

    Journal of medical ethics

    2023  

    Abstract: The practice of placing men and women in the same hospital room (mixed gender rooms) has been prohibited in the UK National Health Service for over a decade. However, recent research demonstrates that the practice is common and increasing in a major New ... ...

    Abstract The practice of placing men and women in the same hospital room (mixed gender rooms) has been prohibited in the UK National Health Service for over a decade. However, recent research demonstrates that the practice is common and increasing in a major New Zealand public hospital. Reports and complaints show that the practice also occurs in Australia. We argue that mixed gender rooms violate the fundamental human rights of personal security and dignity. The high rates of cognitive impairment, sensory impairment and frailty in hospital wards exacerbates the risk for these violations and subsequent harm. We argue for the adoption of specific national policies prohibiting mixed gender rooms and public reporting of breaches. Importantly, these guidelines can be adopted without compromising the rights of gender minorities. In the long term, hospitals should be built with single occupancy rooms.
    Language English
    Publishing date 2023-10-02
    Publishing country England
    Document type Journal Article
    ZDB-ID 194927-5
    ISSN 1473-4257 ; 0306-6800
    ISSN (online) 1473-4257
    ISSN 0306-6800
    DOI 10.1136/jme-2023-109080
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  4. Article ; Online: Pregnant Women Can Finally Expect Better.

    Ballantyne, Angela

    The Hastings Center report

    2019  Volume 49, Issue 1, Page(s) 10–11

    Abstract: A decade of advocacy for the inclusion of pregnant women in the clinical research agenda is starting to pay off. In September, the United States Task Force on Research Specific to Pregnant Women and Lactating Women issued its advice to the secretary of ... ...

    Abstract A decade of advocacy for the inclusion of pregnant women in the clinical research agenda is starting to pay off. In September, the United States Task Force on Research Specific to Pregnant Women and Lactating Women issued its advice to the secretary of Health and Human Services on addressing gaps in knowledge and research on safe and effective therapies for pregnant women and lactating women. The task force is pushing for major reforms. If its recommendations are taken up, we can anticipate a significant shift in pregnancy research in the United States. This will affect pregnant women, clinicians caring for them, researchers, and institutional review boards.
    MeSH term(s) Advisory Committees ; Ethics Committees, Research ; Female ; Humans ; Lactation ; Pregnancy ; Pregnant Women ; United States
    Language English
    Publishing date 2019-02-21
    Publishing country United States
    Document type Journal Article ; Comment
    ZDB-ID 194940-8
    ISSN 1552-146X ; 0093-0334
    ISSN (online) 1552-146X
    ISSN 0093-0334
    DOI 10.1002/hast.971
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    Zs.B 1672: Show issues Location:
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  5. Article ; Online: Adjusting the focus: A public health ethics approach to data research.

    Ballantyne, Angela

    Bioethics

    2019  Volume 33, Issue 3, Page(s) 357–366

    Abstract: This paper contends that a research ethics approach to the regulation of health data research is unhelpful in the era of population-level research and big data because it results in a primary focus on consent (meta-, broad, dynamic and/or specific ... ...

    Abstract This paper contends that a research ethics approach to the regulation of health data research is unhelpful in the era of population-level research and big data because it results in a primary focus on consent (meta-, broad, dynamic and/or specific consent). Two recent guidelines - the 2016 WMA Declaration of Taipei on ethical considerations regarding health databases and biobanks and the revised CIOMS International ethical guidelines for health-related research involving humans - both focus on the growing reliance on health data for research. But as research ethics documents, they remain (to varying degrees) focused on consent and individual control of data use. Many current and future uses of health data make individual consent impractical, if not impossible. Many of the risks of secondary data use apply to communities and stakeholders rather than individual data subjects. Shifting from a research ethics perspective to a public health lens brings a different set of issues into view: how are the benefits and burdens of data use distributed, how can data research empower communities, who has legitimate decision-making capacity? I propose that a public health ethics framework - based on public benefit, proportionality, equity, trust and accountability - provides more appropriate tools for assessing the ethical uses of health data. The main advantage of a public health approach for data research is that it is more likely to foster debate about power, justice and equity and to highlight the complexity of deciding when data use is in the public interest.
    MeSH term(s) Bioethical Issues ; Biomedical Research/ethics ; Data Collection/ethics ; Decision Making ; Empowerment ; Ethics, Research ; Guidelines as Topic ; Health Policy ; Human Experimentation ; Humans ; Information Dissemination/ethics ; Informed Consent ; International Cooperation ; Organizations ; Policy Making ; Population Health ; Public Health/ethics ; Social Justice
    Language English
    Publishing date 2019-01-22
    Publishing country England
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 632984-6
    ISSN 1467-8519 ; 0269-9702
    ISSN (online) 1467-8519
    ISSN 0269-9702
    DOI 10.1111/bioe.12551
    Database MEDical Literature Analysis and Retrieval System OnLINE

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    Zs.B 2998: Show issues Location:
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  6. Article ; Online: Prompting lifestyle interventions to promote weight loss is safe, effective and patient-centred: No.

    Ballantyne, Angela / Steers, Denise / Gray, Lesley

    Journal of primary health care

    2023  Volume 15, Issue 4, Page(s) 385–387

    MeSH term(s) Humans ; Life Style ; Weight Loss
    Language English
    Publishing date 2023-12-19
    Publishing country Australia
    Document type Journal Article
    ZDB-ID 2572943-3
    ISSN 1172-6156 ; 1172-6156
    ISSN (online) 1172-6156
    ISSN 1172-6156
    DOI 10.1071/HC23163
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  7. Article ; Online: IAB Presidential address: "Searching for Justice".

    Ballantyne, Angela

    Bioethics

    2017  Volume 31, Issue 8, Page(s) 570–574

    MeSH term(s) Bioethics/trends ; Cultural Diversity ; Female ; Human Rights/trends ; Humans ; Interpersonal Relations ; Male ; Professional Role ; Social Justice/trends
    Language English
    Publishing date 2017-09-13
    Publishing country England
    Document type Address ; Journal Article
    ZDB-ID 632984-6
    ISSN 1467-8519 ; 0269-9702
    ISSN (online) 1467-8519
    ISSN 0269-9702
    DOI 10.1111/bioe.12393
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  8. Article ; Online: To What Extent Are Calls for Greater Minority Representation in COVID Vaccine Research Ethically Justified?

    Ballantyne, Angela / Ganguli-Mitra, Agomoni

    The American journal of bioethics : AJOB

    2021  Volume 21, Issue 2, Page(s) 99–101

    MeSH term(s) COVID-19 ; COVID-19 Vaccines ; Humans ; Medicine ; Racism ; SARS-CoV-2
    Chemical Substances COVID-19 Vaccines
    Language English
    Publishing date 2021-02-03
    Publishing country United States
    Document type Journal Article ; Comment
    ZDB-ID 2060433-6
    ISSN 1536-0075 ; 1526-5161
    ISSN (online) 1536-0075
    ISSN 1526-5161
    DOI 10.1080/15265161.2020.1861385
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  9. Article ; Online: Where is the human in the data? A guide to ethical data use.

    Ballantyne, Angela

    GigaScience

    2017  Volume 7, Issue 7

    Abstract: Being asked to write about the ethics of big data is a bit like being asked to write about the ethics of life. Big data is now integral to so many aspects of our daily lives-communication, social interaction, medicine, access to government services, ... ...

    Abstract Being asked to write about the ethics of big data is a bit like being asked to write about the ethics of life. Big data is now integral to so many aspects of our daily lives-communication, social interaction, medicine, access to government services, shopping, and navigation. Given this diversity, there is no one-size-fits-all framework for how to ethically manage your data. With that in mind, I present seven ethical values for responsible data use.
    MeSH term(s) Bioethical Issues ; Biomedical Research/ethics ; Computational Biology/ethics ; Computational Biology/methods ; Computer Security ; Confidentiality ; Data Collection/ethics ; Humans ; Information Storage and Retrieval ; Knowledge ; Patient Access to Records/ethics ; Privacy
    Language English
    Publishing date 2017-05-23
    Publishing country United States
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 2708999-X
    ISSN 2047-217X ; 2047-217X
    ISSN (online) 2047-217X
    ISSN 2047-217X
    DOI 10.1093/gigascience/giy076
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  10. Article ; Online: Ethics of digital contact tracing wearables.

    Schaefer, G Owen / Ballantyne, Angela

    Journal of medical ethics

    2021  Volume 48, Issue 9, Page(s) 611–615

    Abstract: The success of digital COVID-19 contact tracing requires a strategy that successfully addresses the digital divide-inequitable access to technology such as smartphones. Lack of access both undermines the degree of social benefit achieved by the use of ... ...

    Abstract The success of digital COVID-19 contact tracing requires a strategy that successfully addresses the digital divide-inequitable access to technology such as smartphones. Lack of access both undermines the degree of social benefit achieved by the use of tracing apps, and exacerbates existing social and health inequities because those who lack access are likely to already be disadvantaged. Recently, Singapore has introduced portable tracing wearables (with the same functionality as a contact tracing app) to address the equity gap and promote public health. We argue that governments have an ethical obligation to ensure fair access to the protective benefits of contract tracing during the pandemic and that wearables are an effective way of addressing some important equity issues. The most contentious issues about contact tracing apps have been the potential infringements of privacy and individual liberty, especially where the use of apps or other technology (such as wearables or QR codes) is required for access to certain spaces. Here we argue that wearables, as opposed to apps alone, will make a digital contact tracing mandate more practical and explain some conditions under which such a mandate would be justified. We focus on Singapore as a case study that has recently deployed contact tracing wearables nationally, but also reference debate about wearables in Australia and New Zealand. Our analysis will be relevant to counties trialling similar portable tracing wearables.
    MeSH term(s) COVID-19 ; Contact Tracing ; Humans ; Mobile Applications ; SARS-CoV-2 ; Wearable Electronic Devices
    Language English
    Publishing date 2021-05-14
    Publishing country England
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 194927-5
    ISSN 1473-4257 ; 0306-6800
    ISSN (online) 1473-4257
    ISSN 0306-6800
    DOI 10.1136/medethics-2020-106958
    Database MEDical Literature Analysis and Retrieval System OnLINE

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