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  • 1
    Online Resource
    Online Resource
    For Your Interest? The Ethical Acceptability of Using Non‐Invasive Prenatal Testing to Test ‘Purely for Information’
    Wiley ; 2015
    In:  Bioethics Vol. 29, No. 1 ( 2015-01), p. 19-25
    Details
    In: Bioethics, Wiley, Vol. 29, No. 1 ( 2015-01), p. 19-25
    Abstract: Non‐invasive prenatal testing ( NIPT ) is an emerging form of prenatal genetic testing that provides information about the genetic constitution of a foetus without the risk of pregnancy loss as a direct result of the test procedure. As with other prenatal tests, information from NIPT can help to make a decision about termination of pregnancy, plan contingencies for birth or prepare parents to raise a child with a genetic condition. NIPT can also be used by women and couples to test purely ‘for information’. Here, no particular action is envisaged following the test; it is motivated entirely by an interest in the result. The fact that NIPT can be performed without posing a risk to the pregnancy could give rise to an increase in such requests. In this paper, we examine the ethical aspects of using NIPT ‘purely for information’, including the competing interests of the prospective parents and the future child, and the acceptability of testing for ‘frivolous’ reasons. Drawing on several clinical scenarios, we claim that arguments about testing children for genetic conditions are relevant to this debate. In addition, we raise ethical concerns over the potential for objectification of the child. We conclude that, in most cases, using NIPT to test for adult‐onset conditions, carrier status or non‐serious traits presenting in childhood would be unacceptable.
    Type of Medium: Online Resource
    ISSN: 0269-9702 , 1467-8519
    URL: Issue
    URL: Article
    DOI: 10.1111/bioe.2015.29.issue-1
    DOI: 10.1111/bioe.12125
    Language: English
    Publisher: Wiley
    Publication Date: 2015
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  • 2
    Online Resource
    Online Resource
    Ethics of Reproductive Genetic Carrier Screening: From the Clinic to the Population
    Oxford University Press (OUP) ; 2021
    In:  Public Health Ethics Vol. 14, No. 2 ( 2021-10-12), p. 202-217
    Details
    In: Public Health Ethics, Oxford University Press (OUP), Vol. 14, No. 2 ( 2021-10-12), p. 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-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.
    Type of Medium: Online Resource
    ISSN: 1754-9981
    URL: Article
    DOI: 10.1093/phe/phab017
    Language: English
    Publisher: Oxford University Press (OUP)
    Publication Date: 2021
    detail.hit.zdb_id: 2438463-X
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  • 3
    Online Resource
    Online Resource
    Reproductive carrier screening: responding to the eugenics critique
    BMJ ; 2022
    In:  Journal of Medical Ethics Vol. 48, No. 12 ( 2022-12), p. 1060-1067
    Details
    In: Journal of Medical Ethics, BMJ, Vol. 48, No. 12 ( 2022-12), p. 1060-1067
    Abstract: Reproductive genetic carrier screening (RCS), when offered to anyone regardless of their family history or ancestry, has been subject to the critique that it is a form of eugenics. Eugenics describes a range of practices that seek to use the science of heredity to improve the genetic composition of a population group. The term is associated with a range of unethical programmes that were taken up in various countries during the 20th century. Contemporary practice in medical genetics has, understandably, distanced itself from such programmes. However, as RCS becomes more widespread, gains public funding and uses expanded gene panels, there are concerns that such programmes could be perceived as eugenic either in intent or outcome. The typical response to the eugenics critique of RCS is to emphasise the voluntary nature of both participating in screening and making subsequent reproductive choices. While safeguarding individuals’ freedom to choose in relation to screening is essential, we consider this response inadequate. By examining the specific ethical wrongs committed by eugenics in the past, we argue that to avoid the perception of RCS being a form of eugenics it is essential to attend to the broader normative context in which reproductive decisions occur. Furthermore, ethical RCS programmes must recognise and respond to their potential to shift societal norms that shape individual reproductive choices.
    Type of Medium: Online Resource
    ISSN: 0306-6800 , 1473-4257
    URL: Article
    DOI: 10.1136/medethics-2021-107343
    RVK:
    XA 54920
    Language: English
    Publisher: BMJ
    Publication Date: 2022
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  • 4
    Online Resource
    Online Resource
    Is there a duty to routinely reinterpret genomic variant classifications?
    BMJ ; 2023
    In:  Journal of Medical Ethics
    Details
    In: Journal of Medical Ethics, BMJ
    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.
    Type of Medium: Online Resource
    ISSN: 0306-6800 , 1473-4257
    URL: Article
    DOI: 10.1136/jme-2022-108864
    RVK:
    XA 54920
    Language: English
    Publisher: BMJ
    Publication Date: 2023
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  • 5
    Online Resource
    Online Resource
    ‘There is a lot of good in knowing, but there is also a lot of downs’: public views on ethical considerations in population genomic screening
    BMJ ; 2021
    In:  Journal of Medical Ethics Vol. 47, No. 12 ( 2021-12), p. e28-e28
    Details
    In: Journal of Medical Ethics, BMJ, Vol. 47, No. 12 ( 2021-12), p. e28-e28
    Abstract: Publics are key stakeholders in population genomic screening and their perspectives on ethical considerations are relevant to programme design and policy making. Using semi-structured interviews, we explored social views and attitudes towards possible future provision of personalised genomic risk information to populations to inform prevention and/or early detection of relevant conditions. Participants were members of the public (n=30) who had received information on their personal genomic risk of melanoma as part of a research project. The focus of the analysis presented here is participants’ views regarding ethical considerations relevant to population genomic screening more generally. Data were analysed thematically and four key themes related to ethical considerations were identified: (i) personal responsibility for health: ‘forewarned is forearmed’; (ii) perceptions of, and responses to, genetic fatalism; (iii) implications for parenting and reproduction; (iv) divided views on choosing to receive genomic risk information. Ethical considerations underlying these themes include the valorisation of information and choice, paternalism, non-directiveness and increasing responsibilisation of individuals in health and healthcare. These findings arguably indicate a thin public conceptualisation of population genomic testing, which draws heavily on how these themes tend to be described in existing social discourses. Findings suggest that further public engagement is required to increase complexity of debate, to consider (for example) the appropriate place of individual and social interests in population genomic testing. Further discernment of relevant ethical approaches, drawing on ethical frameworks from both public health and clinical settings, will also assist in determining the appropriate implementation of population genomic screening for complex conditions.
    Type of Medium: Online Resource
    ISSN: 0306-6800 , 1473-4257
    URL: Article
    DOI: 10.1136/medethics-2019-105934
    RVK:
    XA 54920
    Language: English
    Publisher: BMJ
    Publication Date: 2021
    detail.hit.zdb_id: 2026397-1
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  • 6
    Online Resource
    Online Resource
    Is Mitochondrial Donation Germ‐Line Gene Therapy? Classifications and Ethical Implications
    Wiley ; 2017
    In:  Bioethics Vol. 31, No. 1 ( 2017-01), p. 55-67
    Details
    In: Bioethics, Wiley, Vol. 31, No. 1 ( 2017-01), p. 55-67
    Abstract: The classification of techniques used in mitochondrial donation, including their role as purported germ‐line gene therapies, is far from clear. These techniques exhibit characteristics typical of a variety of classifications that have been used in both scientific and bioethics scholarship. This raises two connected questions, which we address in this paper: (i) how should we classify mitochondrial donation techniques?; and (ii) what ethical implications surround such a classification? First, we outline how methods of genetic intervention, such as germ‐line gene therapy, are typically defined or classified. We then consider whether techniques of mitochondrial donation fit into these, whether they might do so with some refinement of these categories, or whether they require some other approach to classification. To answer the second question, we discuss the relationship between classification and several key ethical issues arising from mitochondrial donation. We conclude that the properties characteristic of mitochondrial inheritance mean that most mitochondrial donation techniques belong to a new sub‐class of genetic modification, which we call ‘conditionally inheritable genomic modification’ (CIGM).
    Type of Medium: Online Resource
    ISSN: 0269-9702 , 1467-8519
    URL: Issue
    URL: Article
    DOI: 10.1111/bioe.2017.31.issue-1
    DOI: 10.1111/bioe.12312
    Language: English
    Publisher: Wiley
    Publication Date: 2017
    detail.hit.zdb_id: 1480658-7
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  • 7
    Online Resource
    Online Resource
    The role of patients in European clinical ethics consultation
    SAGE Publications ; 2009
    In:  Clinical Ethics Vol. 4, No. 3 ( 2009-09), p. 109-110
    Details
    In: Clinical Ethics, SAGE Publications, Vol. 4, No. 3 ( 2009-09), p. 109-110
    Type of Medium: Online Resource
    ISSN: 1477-7509 , 1758-101X
    URL: Article
    DOI: 10.1258/ce.2009.009015
    Language: English
    Publisher: SAGE Publications
    Publication Date: 2009
    detail.hit.zdb_id: 2231775-2
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  • 8
    Online Resource
    Online Resource
    Clinical Ethics Committee case 5: Should we discharge our vulnerable patient to a family who seem unable to look after her?
    SAGE Publications ; 2009
    In:  Clinical Ethics Vol. 4, No. 1 ( 2009-03), p. 6-11
    Details
    In: Clinical Ethics, SAGE Publications, Vol. 4, No. 1 ( 2009-03), p. 6-11
    Type of Medium: Online Resource
    ISSN: 1477-7509 , 1758-101X
    URL: Article
    DOI: 10.1258/ce.2008.008045
    Language: English
    Publisher: SAGE Publications
    Publication Date: 2009
    detail.hit.zdb_id: 2231775-2
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  • 9
    Online Resource
    Online Resource
    Clinical Ethics Committee Case 8: Should we carry out a predictive genetic test in our young patient?
    SAGE Publications ; 2009
    In:  Clinical Ethics Vol. 4, No. 4 ( 2009-12), p. 169-172
    Details
    In: Clinical Ethics, SAGE Publications, Vol. 4, No. 4 ( 2009-12), p. 169-172
    Type of Medium: Online Resource
    ISSN: 1477-7509 , 1758-101X
    URL: Article
    DOI: 10.1258/ce.2009.009032
    Language: English
    Publisher: SAGE Publications
    Publication Date: 2009
    detail.hit.zdb_id: 2231775-2
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  • 10
    Online Resource
    Online Resource
    Clinical Ethics Committee Case 16: A request from an accident and emergency department – should we give our patient a blood transfusion?
    SAGE Publications ; 2011
    In:  Clinical Ethics Vol. 6, No. 4 ( 2011-12), p. 154-158
    Details
    In: Clinical Ethics, SAGE Publications, Vol. 6, No. 4 ( 2011-12), p. 154-158
    Type of Medium: Online Resource
    ISSN: 1477-7509 , 1758-101X
    URL: Article
    DOI: 10.1258/ce.2011.011041
    Language: English
    Publisher: SAGE Publications
    Publication Date: 2011
    detail.hit.zdb_id: 2231775-2
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