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  1. Article ; Online: Liminality between direct and family-mediated contact in the communication of genetic information to at-risk relatives.

    Mendes, Álvaro / Newson, Ainsley J

    European journal of human genetics : EJHG

    2024  

    Language English
    Publishing date 2024-04-16
    Publishing country England
    Document type Journal Article ; Comment
    ZDB-ID 1141470-4
    ISSN 1476-5438 ; 1018-4813
    ISSN (online) 1476-5438
    ISSN 1018-4813
    DOI 10.1038/s41431-024-01605-y
    Database MEDical Literature Analysis and Retrieval System OnLINE

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    Zs.A 3589: Show issues Location:
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  2. Article ; Online: Reconsidering reinterpretation: response to commentaries.

    Watts, Gabriel / Newson, Ainsley J

    Journal of medical ethics

    2023  Volume 49, Issue 12, Page(s) 824–825

    Language English
    Publishing date 2023-11-23
    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-2023-109615
    Database MEDical Literature Analysis and Retrieval System OnLINE

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    Zs.A 1163: Show issues Location:
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  3. Article ; Online: The promise of public health ethics for precision medicine: the case of newborn preventive genomic sequencing.

    Newson, Ainsley J

    Human genetics

    2021  Volume 141, Issue 5, Page(s) 1035–1043

    Abstract: Precision medicine aims to tailor medical treatment to match individual characteristics and to stratify individuals to concentrate benefits and avoid harm. It has recently been joined by precision public health-the application of precision medicine at ... ...

    Abstract Precision medicine aims to tailor medical treatment to match individual characteristics and to stratify individuals to concentrate benefits and avoid harm. It has recently been joined by precision public health-the application of precision medicine at population scale to decrease morbidity and optimise population health. Newborn preventive genomic sequencing (NPGS) provides a helpful case study to consider how we should approach ethical questions in precision public health. In this paper, I use NPGS as a case in point to argue that both precision medicine and precision public health need public health ethics. I make this argument in two parts. First, I claim that discussions of ethics in precision medicine and NPGS tend to focus on predominantly individualistic concepts from medical ethics such as autonomy and empowerment. This highlights some deficiencies, including overlooking that choice is subject to constraints and that an individual's place in the world might impact their capacity to 'be responsible'. Second, I make the case for using a public health ethics approach when considering ethics and NPGS, and thus precision public health more broadly. I discuss how precision public health needs to be construed as a collective enterprise and not just as an aggregation of individual interests. I also show how analysing collective values and interests through concepts such as solidarity can enrich ethical discussion of NPGS and highlight previously overlooked issues. With this approach, bioethics can contribute to more just and more appropriate applications of precision medicine and precision public health, including NPGS.
    MeSH term(s) Bioethics ; Genomics ; Humans ; Infant, Newborn ; Precision Medicine ; Public Health
    Language English
    Publishing date 2021-03-14
    Publishing country Germany
    Document type Journal Article ; Review
    ZDB-ID 223009-4
    ISSN 1432-1203 ; 0340-6717
    ISSN (online) 1432-1203
    ISSN 0340-6717
    DOI 10.1007/s00439-021-02269-0
    Database MEDical Literature Analysis and Retrieval System OnLINE

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    Zs.A 256: Show issues Location:
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  4. Article ; Online: Is there a duty to routinely reinterpret genomic variant classifications?

    Watts, Gabriel / Newson, Ainsley J

    Journal of medical ethics

    2023  Volume 49, Issue 12, Page(s) 808–814

    Abstract: Multiple studies show that periodic reanalysis of genomic test results held by clinical laboratories delivers significant increases in overall diagnostic yield. However, while there is a widespread consensus that implementing routine reanalysis ... ...

    Abstract Multiple studies show that periodic reanalysis of genomic test results held by clinical laboratories delivers significant increases in overall diagnostic yield. However, while there is a widespread consensus that implementing routine reanalysis procedures is highly desirable, there is an equally widespread understanding that routine reanalysis of individual patient results is not presently feasible to perform for all patients. Instead, researchers, geneticists and ethicists are beginning to turn their attention to one part of reanalysis-reinterpretation of previously classified variants-as a means of achieving similar ends to large-scale individual reanalysis but in a more sustainable manner. This has led some to ask whether the responsible implementation of genomics in healthcare requires that diagnostic laboratories routinely reinterpret their genomic variant classifications and reissue patient reports in the case of materially relevant changes. In this paper, we set out the nature and scope of any such obligation, and analyse some of the main ethical considerations pertaining to a putative duty to reinterpret. We discern and assess three potential outcomes of reinterpretation-upgrades, downgrades and regrades-in light of ongoing duties of care, systemic error risks and diagnostic equity. We argue against the existence of any general duty to reinterpret genomic variant classifications, yet we contend that a suitably restricted duty to reinterpret ought to be recognised, and that the responsible implementation of genomics into healthcare must take this into account.
    MeSH term(s) Humans ; Genomics ; Genetic Testing
    Language English
    Publishing date 2023-11-23
    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-2022-108864
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  5. Article ; Online: Ethically robust reproductive genetic carrier screening needs to measure outcomes that matter to patients.

    Dive, Lisa / Newson, Ainsley J

    European journal of human genetics : EJHG

    2022  Volume 30, Issue 7, Page(s) 754–755

    MeSH term(s) Genetic Carrier Screening ; Genetic Counseling ; Genetic Testing ; Humans
    Language English
    Publishing date 2022-05-18
    Publishing country England
    Document type Journal Article
    ZDB-ID 1141470-4
    ISSN 1476-5438 ; 1018-4813
    ISSN (online) 1476-5438
    ISSN 1018-4813
    DOI 10.1038/s41431-022-01109-7
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    Zs.A 3589: Show issues Location:
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  6. Article ; Online: Taking seriousness seriously in genomic health.

    Newson, Ainsley J / Dive, Lisa

    European journal of human genetics : EJHG

    2021  Volume 30, Issue 2, Page(s) 140–141

    MeSH term(s) Genomics ; Humans
    Language English
    Publishing date 2021-11-15
    Publishing country England
    Document type Journal Article ; Research Support, Non-U.S. Gov't ; Comment
    ZDB-ID 1141470-4
    ISSN 1476-5438 ; 1018-4813
    ISSN (online) 1476-5438
    ISSN 1018-4813
    DOI 10.1038/s41431-021-01002-9
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  7. Article ; Online: Consistency of What? Appropriately Contextualizing Ethical Analysis of Non-Invasive Prenatal Testing.

    Newson, Ainsley J / Deans, Zuzana / Dive, Lisa / Holmes, Isabella Catherine

    The American journal of bioethics : AJOB

    2023  Volume 23, Issue 3, Page(s) 56–58

    MeSH term(s) Pregnancy ; Female ; Humans ; Prenatal Diagnosis/ethics ; Genetic Testing/ethics ; Ethical Analysis
    Language English
    Publishing date 2023-03-16
    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 10.1080/15265161.2023.2169402
    Database MEDical Literature Analysis and Retrieval System OnLINE

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    Zs.A 6814: Show issues Location:
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  8. Article ; Online: Is It Just for a Screening Program to Give People All the Information They Want?

    Dive, Lisa / Holmes, Isabella / Newson, Ainsley J

    The American journal of bioethics : AJOB

    2023  Volume 23, Issue 7, Page(s) 34–42

    Abstract: Genomic screening at population scale generates many ethical considerations. One is the normative role that people's preferences should play in determining access to genomic information in screening contexts, particularly information that falls beyond ... ...

    Abstract Genomic screening at population scale generates many ethical considerations. One is the normative role that people's preferences should play in determining access to genomic information in screening contexts, particularly information that falls beyond the scope of screening. We expect both that people will express a preference to receive such results and that there will be interest from the professional community in providing them. In this paper, we consider this issue in relation to the just and equitable design of population screening programs like reproductive genetic carrier screening (RGCS). Drawing on a pluralistic public health ethics perspective, we claim that generating and reporting information about genetic variants beyond the scope of the screening program usually lacks clinical, and perhaps personal, utility. There are both pragmatic and ethical reasons to restrict information provision to that which fits the stated purpose of the program.
    MeSH term(s) Humans ; Public Health ; Genetic Testing/ethics ; Mass Screening
    Language English
    Publishing date 2023-05-12
    Publishing country United States
    Document type Journal Article
    ZDB-ID 2060433-6
    ISSN 1536-0075 ; 1526-5161
    ISSN (online) 1536-0075
    ISSN 1526-5161
    DOI 10.1080/15265161.2023.2207510
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  9. Article ; Online: To offer or request? Disclosing variants of uncertain significance in prenatal testing.

    Watts, Gabriel / Newson, Ainsley J

    Bioethics

    2021  Volume 35, Issue 9, Page(s) 900–909

    Abstract: The use of genomic testing in pregnancy is increasing, giving rise to questions over how the information that is generated should be offered and returned in clinical practice. While these tests provide important information for prenatal decision-making, ... ...

    Abstract The use of genomic testing in pregnancy is increasing, giving rise to questions over how the information that is generated should be offered and returned in clinical practice. While these tests provide important information for prenatal decision-making, they can also generate information of uncertain significance. This paper critically examines three models for approaching the disclosure of variants of uncertain significance (VUS), which can arise from forms of genomic testing such as prenatal chromosomal microarray analysis (CMA). Contrary to prevailing arguments, we argue that respect for reproductive autonomy does not justify adopting a model on which an offer to disclose VUS is a routine part of genetic counselling. Instead, we contend that a commitment both to solidarity between healthcare providers and pregnant women and to the acceptance of a novel principle of caution under normative uncertainty means that we should instead adopt a model of VUS disclosure that imposes a strong presumption against offering to disclose VUS. The upshot of this is that it should be standard practice to only offer to disclose VUS when this is requested by the woman undergoing CMA. We defend our position against claims that arise from an alleged right to such information and that a presumption against an offer will lead to inequity.
    MeSH term(s) Female ; Genetic Counseling ; Genetic Testing ; Health Personnel ; Humans ; Pregnancy ; Prenatal Diagnosis ; Uncertainty
    Language English
    Publishing date 2021-08-20
    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.12932
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  10. Article: Ethics of Reproductive Genetic Carrier Screening: From the Clinic to the Population.

    Dive, Lisa / Newson, Ainsley J

    Public health ethics

    2021  Volume 14, Issue 2, Page(s) 202–217

    Abstract: Reproductive genetic carrier screening (RCS) is increasingly being offered more widely, including to people with no family history or otherwise elevated chance of having a baby with a genetic condition. There are valid reasons to reject a prevention- ... ...

    Abstract Reproductive genetic carrier screening (RCS) is increasingly being offered more widely, including to people with no family history or otherwise elevated chance of having a baby with a genetic condition. There are valid reasons to reject a prevention-focused public health ethics approach to such screening programs. Rejecting the prevention paradigm in this context has led to an emphasis on more individually-focused values of freedom of choice and fostering reproductive autonomy in RCS. We argue, however, that population-wide RCS has sufficient features in common with other public health screening programs that it becomes important also to attend to its public health implications. Not doing so constitutes a failure to address the social conditions that significantly affect people's capacity to exercise their reproductive autonomy. We discuss how a public health ethics approach to RCS is broader in focus than prevention. We also show that additional values inherent to ethical public health-such as equity and solidarity-are essential to underpin and inform the aims and implementation of reproductive carrier screening programs.
    Language English
    Publishing date 2021-06-14
    Publishing country England
    Document type Journal Article
    ZDB-ID 2438463-X
    ISSN 1754-9981 ; 1754-9973
    ISSN (online) 1754-9981
    ISSN 1754-9973
    DOI 10.1093/phe/phab017
    Database MEDical Literature Analysis and Retrieval System OnLINE

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