35 found
Order:
Disambiguations
Anneke Lucassen [21]A. Lucassen [7]Anneke M. Lucassen [7]A. M. Lucassen [2]
  1.  21
    Familial Genetic Risks: How Can We Better Navigate Patient Confidentiality and Appropriate Risk Disclosure to Relatives?Edward S. Dove, Vicky Chico, Michael Fay, Graeme Laurie, Anneke M. Lucassen & Emily Postan - 2019 - Journal of Medical Ethics 45 (8):504-507.
    This article investigates a high-profile and ongoing dilemma for healthcare professionals, namely whether the existence of a duty of care to genetic relatives of a patient is a help or a hindrance in deciding what to do in cases where a patient’s genetic information may have relevance to the health of the patient’s family members. The English case ABC v St George’s Healthcare NHS Trust and others considered if a duty of confidentiality owed to the patient and a putative duty (...)
    Direct download (5 more)  
     
    Export citation  
     
    Bookmark   5 citations  
  2.  5
    Using Biomarkers in Acute Medicine to Prevent Hearing Loss: Should This Require Specific Consent?Peta Coulson-Smith & Anneke Lucassen - 2020 - Journal of Medical Ethics 46 (8):536-537.
    In this round table response, we discuss some of the problems inherent in insisting on specific consent for an activity that needs to happen rapidly as part of a package of care. The Human Tissue Authority consider that specific consent is mandatory to assess which antibiotics are appropriate on the neonatal unit, but this insistence may actually limit the autonomy which consent aims to promote. While genetic testing to determine which child will react adversely to particular antibiotics has been available (...)
    Direct download (5 more)  
     
    Export citation  
     
    Bookmark   4 citations  
  3.  29
    ‘Is This Knowledge Mine and Nobody Else's? I Don't Feel That.’ Patient Views About Consent, Confidentiality and Information-Sharing in Genetic Medicine: Table 1.Sandi Dheensa, Angela Fenwick & Anneke Lucassen - 2016 - Journal of Medical Ethics 42 (3):174-179.
    Direct download (9 more)  
     
    Export citation  
     
    Bookmark   9 citations  
  4.  11
    Is It Acceptable to Contact an Anonymous Egg Donor to Facilitate Diagnostic Genetic Testing for the Donor-Conceived Child?Rachel Horton, Benjamin Bell, Angela Fenwick & Anneke M. Lucassen - 2019 - Journal of Medical Ethics 45 (6):357-360.
    We discuss a case where medically optimal investigations of health problems in a donor-conceived child would require their egg donor to participate in genetic testing. We argue that it would be justified to contact the egg donor to ask whether she would consider this, despite her indicating on a historical consent form that she did not wish to take part in future research and that she did not wish to be informed if she was found to be a carrier of (...)
    Direct download (5 more)  
     
    Export citation  
     
    Bookmark   4 citations  
  5.  17
    The Moral Argument for Heritable Genome Editing Requires an Inappropriately Deterministic View of Genetics.Rachel Horton & Anneke M. Lucassen - 2019 - Journal of Medical Ethics 45 (8):526-527.
    Gyngell and colleagues consider that the recent Nuffield Council report does not go far enough: heritable genome editing is not just justifiable in a few rare cases; instead, there is a moral imperative to undertake it. We agree that there is a moral argument for this, but in the real world it is mitigated by the fact that it is not usually possible to ensure a better life. We suggest that a moral imperative for HGE can currently only be concluded (...)
    Direct download (5 more)  
     
    Export citation  
     
    Bookmark   3 citations  
  6.  9
    Towards a National Genomics Medicine Service: The Challenges Facing Clinical-Research Hybrid Practices and the Case of the 100 000 Genomes Project. [REVIEW]Sandi Dheensa, Gabrielle Samuel, Anneke M. Lucassen & Bobbie Farsides - 2018 - Journal of Medical Ethics 44 (6):397-403.
    Clinical practice and research are governed by distinct rules and regulations and have different approaches to, for example, consent and providing results. However, genomics is an example of where research and clinical practice have become codependent. The 100 000 genomes project is a hybrid venture where a person can obtain a clinical investigation only if he or she agrees to also participate in ongoing research—including research by industry and commercial companies. In this paper, which draws on 20 interviews with professional (...)
    Direct download (8 more)  
     
    Export citation  
     
    Bookmark   4 citations  
  7.  11
    The Road to Clinical Fantasy: A UK Perspective.Angela Fenwick, Peta Coulson-Smith & Anneke Lucassen - 2018 - American Journal of Bioethics 18 (1):26-27.
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark   3 citations  
  8.  13
    Testing Children for Adult Onset Conditions: The Importance of Contextual Clinical Judgement.Anneke Lucassen & Angela Fenwick - 2012 - Journal of Medical Ethics 38 (9):531-532.
  9.  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 (...)
    Direct download (7 more)  
     
    Export citation  
     
    Bookmark   5 citations  
  10.  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 (...)
    Direct download (7 more)  
     
    Export citation  
     
    Bookmark   6 citations  
  11.  17
    Genetic Testing of Children: The Need for a Family Perspective.Anneke Lucassen, Guy Widdershoven, Suzanne Metselaar, Angela Fenwick & Michael Parker - 2014 - American Journal of Bioethics 14 (3):26-28.
  12.  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 (...)
    Direct download  
     
    Export citation  
     
    Bookmark   5 citations  
  13.  55
    Ethics and Research Governance: The Views of Researchers, Health-Care Professionals and Other Stakeholders.N. Hallowell, S. Cooke, G. Crawford, M. Parker & A. 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, (...)
    Direct download  
     
    Export citation  
     
    Bookmark   3 citations  
  14.  9
    In Defense of Best Interests: When Parents and Clinicians Disagree.Peta Coulson-Smith, Angela Fenwick & Anneke Lucassen - 2018 - American Journal of Bioethics 18 (8):67-69.
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  15.  27
    Genetic Testing Without Consent: The Implications of the New Human Tissue Act 2004.A. Lucassen & J. Kaye - 2006 - Journal of Medical Ethics 32 (12):690-692.
    Despite its focus on consent the new Human Tissue Act 2004 allows for testing without consent where a relative could benefitIn recognition of the fact that genetic test results in people can have implications for close relatives, the new Human Tissue Act 2004 allows for a direction to access a person’s tissue so that testing can be carried out for the benefit of a relative, without the consent of that person. Clinical practice governed by common law and statute, before this (...)
    Direct download (8 more)  
     
    Export citation  
     
    Bookmark   3 citations  
  16.  41
    Rescue Obligations and Collective Approaches: Complexities in Genomics.Angela Fenwick, Sandi Dheensa, Gillian Crawford, Shiri Shkedi-Rafid & Anneke Lucassen - 2015 - American Journal of Bioethics 15 (2):23-25.
  17.  15
    Relative Risk and Relatives' Risks in Genomic Medicine.Angela Fenwick, Shiri Shkedi-Rafid & Anneke Lucassen - 2016 - American Journal of Bioethics 16 (2):25-27.
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  18.  56
    The UK Genethics Club: Clinical Ethics Support for Genetic Services.Anneke Lucassen & Michael Parker - 2006 - Clinical Ethics 1 (4):219-223.
    The UK Genethics Club was established in November 2001 in order to provide a national forum of ethics support for the profession of clinical genetics in the UK. The forum brings together health professionals, medical ethicists and lawyers and support is provided through detailed discussion of cases and sharing of good practice. Clinical genetics professionals had previously voiced concerns about making extremely difficult ethical decisions, with profound implications, in something of a vacuum. Professionals saw a lack of guidance in the (...)
    Direct download  
     
    Export citation  
     
    Bookmark   2 citations  
  19.  2
    Beyond Regulatory Approaches to Ethics: Making Space for Ethical Preparedness in Healthcare Research.Kate Lyle, Susie Weller, Gabby Samuel & Anneke M. Lucassen - forthcoming - Journal of Medical Ethics:medethics-2021-108102.
    Centralised, compliance-focused approaches to research ethics have been normalised in practice. In this paper, we argue that the dominance of such systems has been driven by neoliberal approaches to governance, where the focus on controlling and individualising risk has led to an overemphasis of decontextualised ethical principles and the conflation of ethical requirements with the documentation of ‘informed consent’. Using a UK-based case study, involving a point-of-care-genetic test as an illustration, we argue that rather than ensuring ethical practice such compliance-focused (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark  
  20.  89
    The Troubled Helix: Social and Psychological Implications of the New Human Genetics: Edited by Theresa Marteau and Martin Richards, Cambridge, UK, Cambridge University Press, 1999, 359 Pages, Pound18.95/US$29.95 (Pb). [REVIEW]Anneke Lucassen - 2000 - Journal of Medical Ethics 26 (6):479-479.
  21.  21
    The Shifting Sands of Patient Autonomy and Public Interest Considerations in Health Care.Robert Wheeler, Paul Spargo & Anneke Lucassen - 2011 - Clinical Ethics 6 (4):203-206.
    The past few decades have seen patient autonomy ascend to a prime position in health care. Patient consent is seen as a key component to expression of autonomy. Yet, interventions may also be justified without consent because they are deemed to be in the public interest. We observe some subtle shifts in balance in these justifications in health care and illustrate these with a range of examples. We hope thereby to stimulate a more explicit debate so that health-care professionals can (...)
    Direct download  
     
    Export citation  
     
    Bookmark   1 citation  
  22. Ethical Considerations in Research with Genomic Data.Rachel Horton & Anneke Lucassen - forthcoming - The New Bioethics:1-15.
    Our ability to generate genomic data is currently well ahead of our ability to understand what they mean, raising challenges about how best to engage with them. This article considers ethical aspec...
    No categories
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark  
  23.  7
    Clinical Ethics Committee Case 14: How Should We Transfer a Euthanasia Request Between General Practice and a Hospital Setting?Bert Molewijk & Anneke Lucassen - 2011 - Clinical Ethics 6 (2):58-63.
  24.  8
    Old Consent and New Developments: Health Professionals Should Ask and Not Presume.Rachel Horton, Angela Fenwick & Anneke M. Lucassen - 2020 - Journal of Medical Ethics 46 (6):412-413.
    We thank Lucy Frith for her thought-provoking response1 to our paper, where we argued that it would be ethically acceptable to contact an anonymous egg donor to help facilitate diagnostic genetic testing for a donor-conceived child.2 While we read Frith’s commentary with interest, we still think that the egg donor should be contacted in the case that we describe. Frith raises concerns as to whether contact would constitute ‘ overriding consent ’, thus ’ potentially set a dangerous precedent ’ for (...)
    Direct download (5 more)  
     
    Export citation  
     
    Bookmark  
  25. Predictive Genetic Testing in Children: Where Are We Now? An Overview and a UK Perspective.A. Lucassen & J. Montgomery - unknown
     
    Export citation  
     
    Bookmark   1 citation  
  26.  20
    Mainstreaming Genetics: The Potential for Miscommunication.Donna McBride & Anneke Lucassen - 2011 - Clinical Ethics 6 (4):159-161.
  27.  12
    I Had Genetic Testing for Alzheimer’s Disease Without My Consent.Anneke Lucassen - 2015 - Narrative Inquiry in Bioethics 5 (3):214-216.
  28.  21
    Disclosure of Genetic Information Within Families: A Case Report.G. C. Crawford & A. M. Lucassen - 2008 - Clinical Ethics 3 (1):7-10.
    There has been much discussion about what, if any, legal and moral duties professionals have to disclose relevant genetic information to the family members of someone with an identified disease predisposing mutation. Here, we present a case report where dissemination of such a genetic test result did not take place within a family. In contrast to previous literature, there appeared to be no deliberate withholding of information, instead distant relatives were unable to communicate relevant information appropriately. When communication was facilitated (...)
    Direct download  
     
    Export citation  
     
    Bookmark  
  29.  6
    Unpacking the Concept of a Genomic Result.Angela Fenwick, Anneke Lucassen & Rachel Horton - 2019 - American Journal of Bioethics 19 (1):70-71.
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark  
  30.  9
    Response to Ethical Dissections of the Case.Anneke Lucassen - 2005 - In Richard E. Ashcroft (ed.), Case Analysis in Clinical Ethics. Cambridge University Press. pp. 213.
    Direct download  
     
    Export citation  
     
    Bookmark  
  31.  4
    Using a Biomarker Acutely to Identify Babies at Risk of Serious Adverse Effects From Antibiotics: Where is the ‘Terrible Moral and Medical Dilemma’?Anneke M. Lucassen, John Henry McDermott & William Newman - 2021 - Journal of Medical Ethics 47 (2):117-118.
    We thank Parker and Wright for engaging in this roundtable debate in such a spirited way. The ‘Pharmacogenetic [test] to Avoid Loss of Hearing’ Trial is the first time a genetic point of care test has been applied in the acute neonatal setting; therefore, it is not surprising that questions have been raised which require debate, discussion and clarification. Parker and Wright misattribute several assumptions to the roundtable authors, which we would like to clarify here. Since they raise wider questions (...)
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark  
  32.  8
    Families and Genetic Testing: The Case of Jane and Phyllis.Anneke Lucassen - 2005 - In Richard E. Ashcroft (ed.), Case Analysis in Clinical Ethics. Cambridge University Press. pp. 7--26.
    Direct download  
     
    Export citation  
     
    Bookmark  
  33.  4
    Narrative Symposium: Patient and Research Participant Experiences with Genetic Testing.Dena Davis, Sarah Foye, Sarah M. Hartz, Carla C. Keirns, Christopher M. Lietz, Anneke Lucassen, Jacqueline Savard, K. A. Strong, Kiri Sunde, Michael J. Young, Anonymous One & Anonymous Two - 2015 - Narrative Inquiry in Bioethics 5 (3):203-228.
    No categories
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark  
  34.  7
    Genes and Human Self-Knowledge.A. Lucassen - 1995 - Journal of Medical Ethics 21 (4):250-250.
  35.  5
    Inherited Susceptibility to Cancer: Clinical, Predictive and Ethical Perspectives.A. Lucassen - 1999 - Journal of Medical Ethics 25 (6):551-551.