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Ainsley J. Newson [41]Ainsley Janelle Newson [2]
  1.  21
    Is It Just for a Screening Program to Give People All the Information They Want?Lisa Dive, Isabella Holmes & Ainsley J. Newson - 2023 - American Journal of Bioethics 23 (7):34-42.
    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 (...)
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  2.  67
    Reconceptualizing Autonomy for Bioethics.Lisa Dive & Ainsley J. Newson - 2018 - Kennedy Institute of Ethics Journal 28 (2):171-203.
    The concept of autonomy plays a central role in bioethics,1 but there is no consensus as to how we should understand it beyond a general notion of self-determination. The conception of autonomy deployed in applied ethics2 can have crucial ramifications when it is applied in real-world scenarios, so it is important to be clear. However, this clarity is often lacking when autonomy is discussed in the bioethics literature. In this paper we outline three different conceptions of autonomy, and argue that (...)
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  3.  47
    Clinical ethics consultation in Europe: a comparative and ethical review of the role of patients.Véronique Fournier, Eirini Rari, Reidun Førde, Gerald Neitzke, Renzo Pegoraro & Ainsley J. Newson - 2009 - Clinical Ethics 4 (3):131-138.
    Clinical ethics has developed significantly in Europe over the past 15 years and remains an evolving process. While sharing our experiences in different European settings, we were surprised to discover marked differences in our practice, especially regarding the position and role of patients. In this paper, we describe these differences, such as patient access to and participation or representation in ethics consults. We propose reasons to explain these differences, hypothesizing that they relate to the historic and sociocultural context of implementation (...)
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  4.  32
    Intertwined Interests in Expanded Prenatal Genetic Testing: The State’s Role in Facilitating Equitable Access.Kathryn MacKay, Zuzana Deans, Isabella Holmes, Ainsley J. Newson & Lisa Dive - 2022 - American Journal of Bioethics 22 (2):45-47.
    In their analysis of how much fetal genetic information prospective parents should be able to access, Bayefsky and Berkman determine that parents should only be able to access information th...
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  5.  11
    Is there a duty to routinely reinterpret genomic variant classifications?Gabriel Watts & Ainsley J. Newson - 2023 - Journal of Medical Ethics 49 (12):808-814.
    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 (...)
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  6.  53
    To offer or request? Disclosing variants of uncertain significance in prenatal testing.Gabriel Watts & Ainsley J. Newson - 2021 - Bioethics (9):900-909.
    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 (...)
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  7.  82
    Is Mitochondrial Donation Germ‐Line Gene Therapy? Classifications and Ethical Implications.Anthony Wrigley & Ainsley J. Newson - 2016 - Bioethics 31 (1):55-67.
    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: how should we classify mitochondrial donation techniques?; and what ethical implications surround such a classification? First, we outline how methods of genetic intervention, such as germ-line gene therapy, are typically (...)
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  8.  32
    “Who is watching the watchdog?”: ethical perspectives of sharing health-related data for precision medicine in Singapore.Tamra Lysaght, Angela Ballantyne, Vicki Xafis, Serene Ong, Gerald Owen Schaefer, Jeffrey Min Than Ling, Ainsley J. Newson, Ing Wei Khor & E. Shyong Tai - 2020 - BMC Medical Ethics 21 (1):1-11.
    Background We aimed to examine the ethical concerns Singaporeans have about sharing health-data for precision medicine and identify suggestions for governance strategies. Just as Asian genomes are under-represented in PM, the views of Asian populations about the risks and benefits of data sharing are under-represented in prior attitudinal research. Methods We conducted seven focus groups with 62 participants in Singapore from May to July 2019. They were conducted in three languages and analysed with qualitative content and thematic analysis. Results Four (...)
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  9.  33
    Reproductive carrier screening: responding to the eugenics critique.Lisa Dive & Ainsley J. Newson - 2022 - Journal of Medical Ethics 48 (12):1060-1067.
    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 (...)
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  10.  75
    For Your Interest? The Ethical Acceptability of Using Non‐Invasive Prenatal Testing to Test ‘Purely for Information’.Zuzana Deans, Angus J. Clarke & Ainsley J. Newson - 2014 - Bioethics 29 (1):19-25.
    Non-invasive prenatal testing 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 (...)
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  11.  37
    The role of patients in clinical ethics support: a snapshot of practices and attitudes in the United Kingdom.Ainsley J. Newson - 2009 - Clinical Ethics 4 (3):139-145.
    Clinical ethics committees (CECs) in the United Kingdom (UK) have developed significantly over the past 15 years. The issue of access to and participation in clinical ethics consultation by patients and family members has, however, gone largely unrecognized. There are various dimensions to this kind of contact, including patient notification, consent and participation. This study reports the first specific investigation of patient contact with UK CECs. A questionnaire study was carried out with representatives from UK CECs. Results suggest that patient (...)
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  12.  16
    What moral weight should patient‐led demand have in clinical decisions about assisted reproductive technologies?Craig Stanbury, Wendy Lipworth, Siun Gallagher, Robert J. Norman & Ainsley J. Newson - 2023 - Bioethics 38 (1):69-77.
    Evidence suggests that one reason doctors provide certain interventions in assisted reproductive technologies (ART) is because of patient demand. This is particularly the case when it comes to unproven interventions such as ‘add‐ons’ to in vitro fertilisation (IVF) cycles, or providing IVF cycles that are highly unlikely to succeed. Doctors tend to accede to demands for such interventions because patients are willing to do and pay ‘whatever it takes’ to have a baby. However, there is uncertainty as to what moral (...)
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  13.  73
    The role of patients in European clinical ethics consultation.Ainsley J. Newson, Gerald Neitzke & Stella Reiter-Theil - 2009 - Clinical Ethics 4 (3):109-110.
  14.  69
    Should Non-Invasiveness Change Informed Consent Procedures for Prenatal Diagnosis?Zuzana Deans & Ainsley J. Newson - 2011 - Health Care Analysis 19 (2):122-132.
    Empirical evidence suggests that some health professionals believe consent procedures for the emerging technology of non-invasive prenatal diagnosis (NIPD) should become less rigorous than those currently used for invasive prenatal testing. In this paper, we consider the importance of informed consent and informed choice procedures for protecting autonomy in those prenatal tests which will give rise to a definitive result. We consider whether there is anything special about NIPD that could sanction a change to consent procedures for prenatal diagnosis or (...)
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  15.  21
    Ethics of Reproductive Genetic Carrier Screening: From the Clinic to the Population.Lisa Dive & Ainsley J. Newson - 2021 - Public Health Ethics 14 (2):202-217.
    Reproductive genetic carrier screening 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 (...)
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  16.  16
    The perils of a broad approach to public interest in health data research: a response to Ballantyne and Schaefer.Norah Grewal & Ainsley J. Newson - 2021 - Journal of Medical Ethics 47 (8):580-582.
    The law often calls on the concept of public interest for assistance. Privacy law makes use of this concept in several ways, including to justify consent waivers for secondary research on health information. Because the law sees information privacy as a means for individuals to control their personal information, consent can only be set aside in special circumstances. Ballantyne and Schaefer argue that only public interest, and only a broad conception of public interest, can do the special ‘normative justificatory work’ (...)
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  17.  26
    Ethical considerations for choosing between possible models for using NIPD for aneuploidy detection.Zuzana Deans & Ainsley Janelle Newson - 2012 - Journal of Medical Ethics 38 (10):614-618.
    Recent scientific advances mean the widespread introduction of non-invasive prenatal diagnosis (NIPD) for chromosomal aneuploidies may be close at hand, raising the question of how NIPD should be introduced as part of antenatal care pathways for pregnant women. In this paper, the authors examine the ethical implications of three hypothetical models for using NIPD for aneuploidy in state-funded healthcare systems and assess which model is ethically preferable. In comparing the models, the authors consider their respective timings; how each model would (...)
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  18.  27
    Whole genome sequencing in children: ethics, choice and deliberation.Ainsley J. Newson - 2017 - Journal of Medical Ethics 43 (8):540-542.
  19.  23
    Sharing precision medicine data with private industry: Outcomes of a citizens’ jury in Singapore.Angela Ballantyne, Tamra Lysaght, Hui Jin Toh, Serene Ong, Andrew Lau, G. Owen Schaefer, Vicki Xafis, E. Shyong Tai, Ainsley J. Newson, Stacy Carter, Chris Degeling & Annette Braunack-Mayer - 2022 - Big Data and Society 9 (1).
    Precision medicine is an emerging approach to treatment and disease prevention that relies on linkages between very large datasets of health information that is shared amongst researchers and health professionals. While studies suggest broad support for sharing precision medicine data with researchers at publicly funded institutions, there is reluctance to share health information with private industry for research and development. As the private sector is likely to play an important role in generating public benefits from precision medicine initiatives, it is (...)
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  20.  25
    Obligations and preferences in knowing and not knowing: the importance of context.Lisa Dive & Ainsley Janelle Newson - 2020 - Journal of Medical Ethics 46 (5):306-307.
    In healthcare broadly, and especially in genetic medicine, there is an ongoing debate about whether patients have a right not to know information about their own health. The extensive literature on this topic is characterised by a range of different understandings of what it means to have a RNTK,1–9 and how this purported right relates to patient autonomy. Ben Davies considers whether obligations not to place avoidable burdens on a publicly funded healthcare system might form the basis for an obligation (...)
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  21.  36
    From Expectations to Experiences: Consumer Autonomy and Choice in Personal Genomic Testing.Jacqueline Savard, Chriselle Hickerton, Sylvia A. Metcalfe, Clara Gaff, Anna Middleton & Ainsley J. Newson - 2020 - AJOB Empirical Bioethics 11 (1):63-76.
    Background: Personal genomic testing (PGT) offers individuals genetic information about relationships, wellness, sporting ability, and health. PGT is increasingly accessible online, including in emerging markets such as Australia. Little is known about what consumers expect from these tests and whether their reflections on testing resonate with bioethics concepts such as autonomy. Methods: We report findings from focus groups and semi-structured interviews that explored attitudes to and experiences of PGT. Focus group participants had little experience with PGT, while interview participants had (...)
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  22.  48
    Population screening.Ainsley J. Newson & A. Dawson - forthcoming - Public Health Ethics. Key Concepts and Issues in Policy and Practice.
  23.  39
    Whither authenticity?Ainsley J. Newson & Richard E. Ashcroft - 2005 - American Journal of Bioethics 5 (3):53 – 55.
  24.  25
    Technical Categories and Ethical Justifications: Why Cwik’s Approach is the Wrong Way Around for Categorizing Germ-Line Gene Editing.Anthony Wrigley & Ainsley J. Newson - 2020 - American Journal of Bioethics 20 (8):27-29.
    Volume 20, Issue 8, August 2020, Page 27-29.
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  25.  24
    Clinical Ethics Committee Case 9: Should we inform our patient about animal products in his medicine?Ainsley J. Newson - 2010 - Clinical Ethics 5 (1):7-12.
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  26.  71
    Clinical Ethics Committee case 6: Our patient wishes to take an unlisted drug even though we're not sure of his diagnosis.Ainsley J. Newson - 2009 - Clinical Ethics 4 (2):59-63.
  27.  12
    Reconsidering reinterpretation: response to commentaries.Gabriel Watts & Ainsley J. Newson - 2023 - Journal of Medical Ethics 49 (12):824-825.
    The results of tests carried out using next-generation genomic sequencing (NGS) possess a peculiar and perhaps unique ‘diagnostic durability’. Unlike most other forms of testing, if genomic results or data are stored over time, then it remains possible to interrogate that information indefinitely, without having to retest the patient. Another peculiar property of genomic results is that their interpretations are subject to change within relatively short time frames. For instance, a genomic variant that is of uncertain significance (VUS) at the (...)
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  28.  24
    How should severity be understood in the context of reproductive genetic carrier screening?Lisa Dive, Alison D. Archibald, Lucinda Freeman & Ainsley J. Newson - 2023 - Bioethics 37 (4):359-366.
    Reproductive genetic carrier screening provides information about people's chance of having children with certain genetic conditions. Severity of genetic conditions is an important criterion for their inclusion in carrier screening programmes. However, the concept of severity is conceptually complex and underspecified. We analyse why severity is an important concept in carrier screening and for reproductive decision-making and show that assessments of severity can also have normative societal implications. While some genetic conditions are unambiguously associated with a high degree of suffering, (...)
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  29.  35
    Clinical genetics and the problem with unqualified confidentiality.Rony E. Duncan & Ainsley J. Newson - 2006 - American Journal of Bioethics 6 (2):41 – 43.
  30.  8
    Hope and Exploitation in Commercial Provision of Assisted Reproductive Technologies.Anthony Wrigley, Gabriel Watts, Wendy Lipworth & Ainsley J. Newson - 2023 - Hastings Center Report 53 (5):30-41.
    Innovation is a key driver of care provision in assisted reproductive technologies (ART). ART providers offer a range of add‐on interventions, aiming to augment standard in vitro fertilization protocols and improve the chances of a live birth. Particularly in the context of commercial provision, an ever‐increasing array of add‐ons are marketed to ART patients, even when evidence to support them is equivocal. A defining feature of ART is hope—hope that a cycle will lead to a baby or that another test (...)
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  31.  12
    Consistency of What? Appropriately Contextualizing Ethical Analysis of Non-Invasive Prenatal Testing.Ainsley J. Newson, Zuzana Deans, Lisa Dive & Isabella Catherine Holmes - 2023 - American Journal of Bioethics 23 (3):56-58.
    It is unarguable that the implementation and use of noninvasive prenatal testing (NIPT) should be critical and appropriate. After all, decisions that influence when and how to have children have ut...
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  32.  20
    Disclosure to genetic relatives without consent – Australian genetic professionals’ awareness of the health privacy law.Jane Fleming, Ainsley J. Newson, Kate Dunlop, Kristine Barlow-Stewart & Natalia Meggiolaro - 2020 - BMC Medical Ethics 21 (1):1-10.
    Background: When a genetic mutation is identified in a family member, internationally, it is usually the proband’s or another responsible family member’s role to disclose the information to at-risk relatives. However, both active and passive non-disclosure in families occurs: choosing not to communicate the information or failing to communicate the information despite intention to do so, respectively. The ethical obligations to prevent harm to at-risk relatives and promote the duty of care by genetic health professionals is in conflict with Privacy (...)
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  33.  15
    Clinical ethics committee case 7: our young patient is in heart failure but has multiple co-morbidities. How can we best care for him and his family?Ainsley J. Newson - 2009 - Clinical Ethics 4 (3):111-115.
  34.  14
    Clinical Ethics Committee Case 8: Should we carry out a predictive genetic test in our young patient?Ainsley J. Newson - 2009 - Clinical Ethics 4 (4):169-172.
  35.  96
    Clinical Ethics Committee case 5: Should we discharge our vulnerable patient to a family who seem unable to look after her?Ainsley J. Newson - 2009 - Clinical Ethics 4 (1):6-11.
  36.  37
    Clinical Ethics Committee Case 16: A request from an accident and emergency department - should we give our patient a blood transfusion?Ainsley J. Newson - 2011 - Clinical Ethics 6 (4):154-158.
  37.  22
    Clinical Ethics Committee Case 17: a paramedic sustains a bite while attending a callout and the assailant refuses testing for HIV or hepatitis C: what should we do?Ainsley J. Newson - 2012 - Clinical Ethics 7 (1):1-6.
  38.  15
    Clinical Ethics Committee Case 10: For the record: Should our patient's relatives be able to record her treatment?Ainsley J. Newson - 2010 - Clinical Ethics 5 (2):57-62.
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  39.  18
    Do We Need Ethical Theory to Achieve Quality Critical Engagement in Clinical Ethics?Ainsley J. Newson & Rosalind McDougall - 2016 - American Journal of Bioethics 16 (9):43-45.
  40.  20
    Personal Genomics as an Interactive Web Broadcast.Ainsley J. Newson - 2009 - American Journal of Bioethics 9 (6-7):27-29.
  41.  29
    Regulating Risk and the Boundaries of State Conduct: A Relational Perspective on Home Birth in Australia.Jindalae K. Skerman & Ainsley J. Newson - 2016 - American Journal of Bioethics 16 (2):19-21.
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  42.  21
    ‘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.Amelia K. Smit, Gillian Reyes-Marcelino, Louise Keogh, Anne E. Cust & Ainsley J. Newson - 2021 - Journal of Medical Ethics 47 (12):e28-e28.
    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 who had received information on their personal genomic risk of melanoma as part of a research project. The focus of the analysis presented here (...)
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  43.  42
    Scanning the body, sequencing the genome: Dealing with unsolicited findings.Roel H. P. Wouters, Candice Cornelis, Ainsley J. Newson, Eline M. Bunnik & Annelien L. Bredenoord - 2017 - Bioethics 31 (9):648-656.
    The introduction of novel diagnostic techniques in clinical domains such as genomics and radiology has led to a rich ethical debate on how to handle unsolicited findings that result from these innovations. Yet while unsolicited findings arise in both genomics and radiology, most of the relevant literature to date has tended to focus on only one of these domains. In this article, we synthesize and critically assess similarities and differences between “scanning the body” and “sequencing the genome” from an ethical (...)
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