Anneke Lucassen
Biographic Data
| ID | 301836 |
|---|---|
| NAME | Anneke Lucassen |
| GIVEN NAMES | Anneke |
| FAMILY NAME | Lucassen |
| SIGNATURE | LUCASSEN A |
| AFFILIATIONS | University of Southampton |
| ORCID | 0000-0003-3324-4338 |
| VERIFIED | Yes |
| TOTAL WORKS | 17 |
| TOTAL CITATIONS | 41 |
| AUTHOR COUNT | 17 |
| EDITOR COUNT | 0 |
| FIRST PUBLICATION YEAR | 2006 |
| LATEST PUBLICATION YEAR | 2026 |
| H-INDEX | 3 |
Conceptual ambiguities, systemic barriers and emotional labour: Healthcare professionals’ perspectives on navigating ethnicity in genomic medicine
The increasing integration of genomics across multiple clinical specialties has necessitated a better understanding of how ethnicity information is understood, prioritised, and recorded. In many areas of medicine, ethnicity data is routinely collected to monitor access to services and to support aspects of clinical decision-making. In genomic medicine, ethnicity information is additionally drawn upon as a proxy for biological ancestry, to support…
From Scale to Situated: Sociotechnical Imaginaries and the Configuration of Algorithmic Health Research
Contemporary healthcare systems generate vast volumes of data, with algorithmic interrogation promising disease prediction, improved diagnoses, and optimised treatment. Despite significant investment, biases in data used for algorithmic interrogation persist, leading to inequities in health outcomes. Scale alone cannot address these biases. Rather, considerations of the contextual dimensions of data need to be reflected upon. Nevertheless, calls …
Non‐Directiveness and Authenticity in the Predictive Genetic Clinic
The predictive genetic clinic is a space where counsellors use non‐directive counselling to facilitate asymptomatic patients at risk of carrying a dominantly inherited disease access a predictive genetic test. The social science literature has a history of examining practices within this clinic, but with little attention from the sociology of identity. In this paper, we highlight the importance of identity within these clinics by examining how cu…
Germline genomic testing to assess the suitability of stem cell donors in the treatment of haematological malignancy: Clinical ethics commentary
The increasing integration of genomic medicine into routine medical care brings to light issues of complexity and uncertainty in the interpretation of genetic variation. We describe a fictional case study based on our experiences in the haematological malignancy setting to illustrate the complexities in using genomic testing to evaluate the suitability of relatives to act as stem cell donors. In particular, we demonstrate the ethical issues arisi…
Ethical preparedness and developments in genomic healthcare
Considerations of the notion of preparedness have come to the fore in the recent pandemic, highlighting a need to be better prepared to deal with sudden, unexpected and unwanted events. However, the concept of preparedness is also important in relation to planned for and desired interventions resulting from healthcare innovations. We describe ethical preparedness as a necessary component for the successful delivery of novel healthcare innovations…
Journeys Through Genomics: Co-Producing Visual Resources to Communicate Patient Experiences
Journeys through Genomics is a series of illustrations co-produced with patients and families to communicate their experiences of seeking genomic explanations for a health condition and the wider impact on their lives. The resources are embedded within qualitative longitudinal research exploring patient's experiences of genomic medicine. This research takes place as genomic medicine becomes an integral part of mainstream care within the UK health…
Ethical preparedness in genomic medicine: How NHS clinical scientists navigate ethical issues
Much has been published about the ethical issues encountered by clinicians in genetics/genomics, but those experienced by clinical laboratory scientists are less well described. Clinical laboratory scientists now frequently face navigating ethical problems in their work, but how they should be best supported to do this is underexplored. This lack of attention is also reflected in the ethics tools available to clinical laboratory scientists such a…
Focusing attention on physicians’ climate-related duties may risk missing the bigger picture: Towards a systems approach to health and climate
This study was funded by Wellcome (222180/Z/20/Z and 208053/B/17/Z), SB is funded by an NIHR Academic Clinical Lectureship (CL-2022-13-001)
Discussion of off-target and tentative genomic findings may sometimes be necessary to allow evaluation of their clinical significance
We discuss a case where clinical genomic investigation of muscle weakness unexpectedly found a genetic variant that might (or might not) predispose to kidney cancer. We argue that despite its off-target and uncertain nature, this variant should be discussed with the man who had the test, not because it is medical information, but because this discussion would allow the further clinical evaluation that might lead it to becoming so. We argue that w…
Beyond regulatory approaches to ethics: Making space for ethical preparedness in healthcare research
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,…
Environmental sustainability and biobanking: A pilot study of the field
Biobanks have expanded dramatically over the past few decades, as have their storage and computational requirements. These requirements have environmental impacts, including mineral extraction and manufacturing processes associated with digital infrastructures, carbon emissions related to sample storage and data storage and analysis, and associated waste. Here we analyse whether biobanks have any specific policies about these environmental impact…
Re-imagining 'the patient: Linked lives and lessons from genomic medicine
How 'the patient' is imagined has implications for ethical decision-making in clinical practice. Patients are predominantly conceived in an individualised manner as autonomous and independent decision-makers. Fields such as genomic medicine highlight the inadequacies of this conceptualisation as patients are likely to have family members who may be directly affected by the outcome of tests in others. Indeed, professional guidance has increasingly…
Using a biomarker acutely to identify babies at risk of serious adverse effects from antibiotics: Where is the ‘Terrible Moral and Medical Dilemma’
We thank Parker and Wright for engaging in this roundtable debate in such a spirited way. The ‘Pharmacogenetic [test] to Avoid Loss of Hearing’ (PALOH) 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, whi…
Using biomarkers in acute medicine to prevent hearing loss: Should this require specific consent
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 (the UK regulator for human tissue and organs) 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. Whil…
Dimensions of responsibility in medical genetics: Exploring the complexity of the “duty to recontact”
Discussion of a “duty to recontact” emerged as technological advances left professionals considering getting back in touch with patients they had seen in the past. While there has been much discussion of the duty to recontact as a matter of theory and ethics, there has been rather little empirically based analysis of what this “duty” consists of. Drawing on interviews with 34 professionals working in, or closely with, genetics services, this pape…
Distinguishing research from clinical care in cancer genetics: Theoretical justifications and practical strategies
Guilt, blame and responsibility: Men's understanding of their role in the transmission of BRCA1/2 mutations within their family
Men and women who have a family history of breast and/or ovarian cancer may be offered a predictive genetic test to determine whether or not they carry the family specific BRCA1/2 mutation. The sons and daughters of mutation carriers have a 50 per cent chance of inheriting a mutation, which will increase their risk of developing cancer. Little is known about at-risk men's feelings about the part they play in the transmission of BRCA1/2 mutations …
Guilt, blame and responsibility: Men's understanding of their role in the transmission of BRCA1/2 mutations within their family
Men and women who have a family history of breast and/or ovarian cancer may be offered a predictive genetic test to determine whether or not they carry the family specific BRCA1/2 mutation. The sons and daughters of mutation carriers have a 50 per cent chance of inheriting a mutation, which will increase their risk of developing cancer. Little is known about at-risk men's feelings about the part they play in the transmission of BRCA1/2 mutations …
Distinguishing research from clinical care in cancer genetics: Theoretical justifications and practical strategies
Re-imagining 'the patient: Linked lives and lessons from genomic medicine
How 'the patient' is imagined has implications for ethical decision-making in clinical practice. Patients are predominantly conceived in an individualised manner as autonomous and independent decision-makers. Fields such as genomic medicine highlight the inadequacies of this conceptualisation as patients are likely to have family members who may be directly affected by the outcome of tests in others. Indeed, professional guidance has increasingly…
Guilt, blame and responsibility: Men's understanding of their role in the transmission of BRCA1/2 mutations within their family
Men and women who have a family history of breast and/or ovarian cancer may be offered a predictive genetic test to determine whether or not they carry the family specific BRCA1/2 mutation. The sons and daughters of mutation carriers have a 50 per cent chance of inheriting a mutation, which will increase their risk of developing cancer. Little is known about at-risk men's feelings about the part they play in the transmission of BRCA1/2 mutations …
Distinguishing research from clinical care in cancer genetics: Theoretical justifications and practical strategies
Dimensions of responsibility in medical genetics: Exploring the complexity of the “duty to recontact”
Discussion of a “duty to recontact” emerged as technological advances left professionals considering getting back in touch with patients they had seen in the past. While there has been much discussion of the duty to recontact as a matter of theory and ethics, there has been rather little empirically based analysis of what this “duty” consists of. Drawing on interviews with 34 professionals working in, or closely with, genetics services, this pape…
Using biomarkers in acute medicine to prevent hearing loss: Should this require specific consent
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 (the UK regulator for human tissue and organs) 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. Whil…
Using a biomarker acutely to identify babies at risk of serious adverse effects from antibiotics: Where is the ‘Terrible Moral and Medical Dilemma’
We thank Parker and Wright for engaging in this roundtable debate in such a spirited way. The ‘Pharmacogenetic [test] to Avoid Loss of Hearing’ (PALOH) 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, whi…
Environmental sustainability and biobanking: A pilot study of the field
Biobanks have expanded dramatically over the past few decades, as have their storage and computational requirements. These requirements have environmental impacts, including mineral extraction and manufacturing processes associated with digital infrastructures, carbon emissions related to sample storage and data storage and analysis, and associated waste. Here we analyse whether biobanks have any specific policies about these environmental impact…
Re-imagining 'the patient: Linked lives and lessons from genomic medicine
How 'the patient' is imagined has implications for ethical decision-making in clinical practice. Patients are predominantly conceived in an individualised manner as autonomous and independent decision-makers. Fields such as genomic medicine highlight the inadequacies of this conceptualisation as patients are likely to have family members who may be directly affected by the outcome of tests in others. Indeed, professional guidance has increasingly…
Beyond regulatory approaches to ethics: Making space for ethical preparedness in healthcare research
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,…
Ethical preparedness in genomic medicine: How NHS clinical scientists navigate ethical issues
Much has been published about the ethical issues encountered by clinicians in genetics/genomics, but those experienced by clinical laboratory scientists are less well described. Clinical laboratory scientists now frequently face navigating ethical problems in their work, but how they should be best supported to do this is underexplored. This lack of attention is also reflected in the ethics tools available to clinical laboratory scientists such a…
Focusing attention on physicians’ climate-related duties may risk missing the bigger picture: Towards a systems approach to health and climate
This study was funded by Wellcome (222180/Z/20/Z and 208053/B/17/Z), SB is funded by an NIHR Academic Clinical Lectureship (CL-2022-13-001)
Discussion of off-target and tentative genomic findings may sometimes be necessary to allow evaluation of their clinical significance
We discuss a case where clinical genomic investigation of muscle weakness unexpectedly found a genetic variant that might (or might not) predispose to kidney cancer. We argue that despite its off-target and uncertain nature, this variant should be discussed with the man who had the test, not because it is medical information, but because this discussion would allow the further clinical evaluation that might lead it to becoming so. We argue that w…
Germline genomic testing to assess the suitability of stem cell donors in the treatment of haematological malignancy: Clinical ethics commentary
The increasing integration of genomic medicine into routine medical care brings to light issues of complexity and uncertainty in the interpretation of genetic variation. We describe a fictional case study based on our experiences in the haematological malignancy setting to illustrate the complexities in using genomic testing to evaluate the suitability of relatives to act as stem cell donors. In particular, we demonstrate the ethical issues arisi…
Ethical preparedness and developments in genomic healthcare
Considerations of the notion of preparedness have come to the fore in the recent pandemic, highlighting a need to be better prepared to deal with sudden, unexpected and unwanted events. However, the concept of preparedness is also important in relation to planned for and desired interventions resulting from healthcare innovations. We describe ethical preparedness as a necessary component for the successful delivery of novel healthcare innovations…
Journeys Through Genomics: Co-Producing Visual Resources to Communicate Patient Experiences
Journeys through Genomics is a series of illustrations co-produced with patients and families to communicate their experiences of seeking genomic explanations for a health condition and the wider impact on their lives. The resources are embedded within qualitative longitudinal research exploring patient's experiences of genomic medicine. This research takes place as genomic medicine becomes an integral part of mainstream care within the UK health…
Conceptual ambiguities, systemic barriers and emotional labour: Healthcare professionals’ perspectives on navigating ethnicity in genomic medicine
The increasing integration of genomics across multiple clinical specialties has necessitated a better understanding of how ethnicity information is understood, prioritised, and recorded. In many areas of medicine, ethnicity data is routinely collected to monitor access to services and to support aspects of clinical decision-making. In genomic medicine, ethnicity information is additionally drawn upon as a proxy for biological ancestry, to support…
From Scale to Situated: Sociotechnical Imaginaries and the Configuration of Algorithmic Health Research
Contemporary healthcare systems generate vast volumes of data, with algorithmic interrogation promising disease prediction, improved diagnoses, and optimised treatment. Despite significant investment, biases in data used for algorithmic interrogation persist, leading to inequities in health outcomes. Scale alone cannot address these biases. Rather, considerations of the contextual dimensions of data need to be reflected upon. Nevertheless, calls …
Non‐Directiveness and Authenticity in the Predictive Genetic Clinic
The predictive genetic clinic is a space where counsellors use non‐directive counselling to facilitate asymptomatic patients at risk of carrying a dominantly inherited disease access a predictive genetic test. The social science literature has a history of examining practices within this clinic, but with little attention from the sociology of identity. In this paper, we highlight the importance of identity within these clinics by examining how cu…
Medicine (10 works) · Political science (8 works) · BRCA gene mutations in cancer (7 works) · Computer Science (6 works) · Engineering ethics (6 works) · Ethics in Clinical Research (6 works) · Biology (5 works) · Business (5 works) · Health care (5 works) · Law (5 works)