Carla van El
Biographic Data
| ID | 6684443 |
|---|---|
| NAME | Carla van El |
| GIVEN NAMES | Carla |
| FAMILY NAME | van El |
| SIGNATURE | VAN EL C |
| AFFILIATIONS | Amsterdam University Medical Centers |
| ORCID | 0000-0003-2201-2320 |
| VERIFIED | Yes |
| TOTAL WORKS | 13 |
| TOTAL CITATIONS | 2 |
| AUTHOR COUNT | 13 |
| EDITOR COUNT | 0 |
| FIRST PUBLICATION YEAR | 2006 |
| LATEST PUBLICATION YEAR | 2026 |
| H-INDEX | 1 |
Dutch Christian Faith Leaders Deliberating Human Germline Gene Editing
While human germline gene editing (HGGE) is not allowed, the World Health Organization and others called for public dialogue to clarify the values at stake. Some values may be rooted in religion, such as Christianity, and relevant to religious communities and wider society. In-depth interviews (N = 16) were conducted with Dutch Christian faith leaders in 2019 and 2024. Participants were asked about their views and underlying values, their possibl…
Towards societal alignment in the governance of human germline genome editing in the Netherlands
Although international consensus exists among scientists that clinical application of human germline genome editing (HGGE) should not occur in the near future, the Dutch parliament is considering significantly expanding HGGE research options. Because HGGE policy determines medical practice and potentially the lives of future generations, it is crucial that public values are safeguarded in pertinent decisions. This study applies the governance eco…
Personalised prevention
Enhancing patient and public engagement in personalised prevention requires more focus on communication, inclusivity, and secure data use. The findings provide actionable insights, promoting systematic engagement across Research, Care, and Governance. Clear information about prevention strategies and treatment options must be accessible, while diverse voices should be represented in decision-making. Collaboration with communities and better use o…
The impact of counselors’ values and religious beliefs on their role identity and perspectives on heritable genome editing
The implementation of the noninvasive prenatal test has shown the importance of involving future care providers in healthcare innovations at an early stage. Therefore, in this explorative study in-depth interviews were performed with Dutch midwife counselors who explicitly identify as religious, to explore how they currently deal with their worldview during counseling for prenatal anomaly screening and regarding their perspectives on heritable ge…
Engagement of patients and the public in personalised prevention in Europe using genomic information
Introduction: Personalised prevention using genomic information requires active involvement from patients and the public, who should be well-informed and empowered to make healthcare decisions that reflect their personal values. We aimed to map engagement practises, and assess the extent and types of engagement methods used in the field of personalised prevention of common chronic conditions using genomic information. Methods: A scoping review on…
Between desire and fear
Human genome editing technologies are advancing at a rapid pace, and their potential disruptive implications lead to ethical and societal questions that cannot be addressed by scientists alone. Further consideration of different stakeholders’ views on human genome editing is crucial to translate society’s needs and values into thoughtful regulations and policies. We therefore explored the views of carriers of autosomal dominant disorders on somat…
How Should Decision Aids Be Used During Counseling to Help Patients Who Are “Genetically at Risk”
People with genetic predispositions to disease are faced with uncertainty about whether, when, and to what extent an illness will actually develop. This prognostic uncertainty, combined with knowledge that preventative interventions (eg, risk-reducing surgeries for familial cancer syndromes) could significantly affect people's lives, renders prevention decisions especially challenging. This article illuminates ethical questions about the use of d…
Risk and the politics of boundary work
Midwives’ position in maternal and newborn care (MNC) in the Netherlands is unique: unlike many other countries, they have retained the authority over risk assessment and referral. We studied why and how midwives formally gained their position as gatekeepers, a role formally granted in 1987 by the Study Group for the Revision of the Kloosterman List (SGKL), a group of representatives from all professions and organisations involved in Dutch MNC. W…
The challenge of implementing genetic tests with clinical utility while avoiding unsound applications
The Politics of Representation in the Governance of Emergent 'Secondary Use' Biobanks
There is an international discussion to transform the collection of dried blood spot (DBS) card collections resulting from neonatal public health screening programs into a kind of biobank through the formalization of their (prolonged) retention and by expanding their use in medical research and development (R&D) practices. Given the scale of neonatal heel prick screening, these blood samples are increasingly being considered as a wealth of biolog…
The promises of genomic screening
New screening possibilities become available at a high rate, both useful and unsound possibilities. All screening programmes do harm, and only few have more advantages than disadvantages at reasonable cost. Horizon scanning is needed to identify those few possibilities with more pros than cons. Attunement is needed between actors involved: scientists developing new high-throughput screening techniques and treatment, health care workers, patients …
A case study of haemoglobinopathy screening in the Netherlands
Carrier screening in general never appeared high on the policy agenda. Registration of ethnicity remains sensitive caused by the current political climate. Complexities related to carrier screening are a challenge in Dutch healthcare. Whether carrier screening will be considered a valuable complementary strategy in the Netherlands, depends partly on participation of representatives of high-risk groups in policy making
Marian van der Klein, Ziek, zwak of zwanger. Vrouwen en arbeidsongeschiktheid in Nederlandse sociale verzekeringen, 1890-1940
TSEG (Tijdschrift voor Sociale en Economische Geschiedenis) - The Low Countries Journal of Social and Economic History, is het Nederlands-Vlaamse vaktijdschrift op het gebied van de sociale en economische geschiedenis
The Politics of Representation in the Governance of Emergent 'Secondary Use' Biobanks
There is an international discussion to transform the collection of dried blood spot (DBS) card collections resulting from neonatal public health screening programs into a kind of biobank through the formalization of their (prolonged) retention and by expanding their use in medical research and development (R&D) practices. Given the scale of neonatal heel prick screening, these blood samples are increasingly being considered as a wealth of biolog…
A case study of haemoglobinopathy screening in the Netherlands
Carrier screening in general never appeared high on the policy agenda. Registration of ethnicity remains sensitive caused by the current political climate. Complexities related to carrier screening are a challenge in Dutch healthcare. Whether carrier screening will be considered a valuable complementary strategy in the Netherlands, depends partly on participation of representatives of high-risk groups in policy making
Marian van der Klein, Ziek, zwak of zwanger. Vrouwen en arbeidsongeschiktheid in Nederlandse sociale verzekeringen, 1890-1940
TSEG (Tijdschrift voor Sociale en Economische Geschiedenis) - The Low Countries Journal of Social and Economic History, is het Nederlands-Vlaamse vaktijdschrift op het gebied van de sociale en economische geschiedenis
The promises of genomic screening
New screening possibilities become available at a high rate, both useful and unsound possibilities. All screening programmes do harm, and only few have more advantages than disadvantages at reasonable cost. Horizon scanning is needed to identify those few possibilities with more pros than cons. Attunement is needed between actors involved: scientists developing new high-throughput screening techniques and treatment, health care workers, patients …
A case study of haemoglobinopathy screening in the Netherlands
Carrier screening in general never appeared high on the policy agenda. Registration of ethnicity remains sensitive caused by the current political climate. Complexities related to carrier screening are a challenge in Dutch healthcare. Whether carrier screening will be considered a valuable complementary strategy in the Netherlands, depends partly on participation of representatives of high-risk groups in policy making
The challenge of implementing genetic tests with clinical utility while avoiding unsound applications
The Politics of Representation in the Governance of Emergent 'Secondary Use' Biobanks
There is an international discussion to transform the collection of dried blood spot (DBS) card collections resulting from neonatal public health screening programs into a kind of biobank through the formalization of their (prolonged) retention and by expanding their use in medical research and development (R&D) practices. Given the scale of neonatal heel prick screening, these blood samples are increasingly being considered as a wealth of biolog…
Risk and the politics of boundary work
Midwives’ position in maternal and newborn care (MNC) in the Netherlands is unique: unlike many other countries, they have retained the authority over risk assessment and referral. We studied why and how midwives formally gained their position as gatekeepers, a role formally granted in 1987 by the Study Group for the Revision of the Kloosterman List (SGKL), a group of representatives from all professions and organisations involved in Dutch MNC. W…
How Should Decision Aids Be Used During Counseling to Help Patients Who Are “Genetically at Risk”
People with genetic predispositions to disease are faced with uncertainty about whether, when, and to what extent an illness will actually develop. This prognostic uncertainty, combined with knowledge that preventative interventions (eg, risk-reducing surgeries for familial cancer syndromes) could significantly affect people's lives, renders prevention decisions especially challenging. This article illuminates ethical questions about the use of d…
Between desire and fear
Human genome editing technologies are advancing at a rapid pace, and their potential disruptive implications lead to ethical and societal questions that cannot be addressed by scientists alone. Further consideration of different stakeholders’ views on human genome editing is crucial to translate society’s needs and values into thoughtful regulations and policies. We therefore explored the views of carriers of autosomal dominant disorders on somat…
The impact of counselors’ values and religious beliefs on their role identity and perspectives on heritable genome editing
The implementation of the noninvasive prenatal test has shown the importance of involving future care providers in healthcare innovations at an early stage. Therefore, in this explorative study in-depth interviews were performed with Dutch midwife counselors who explicitly identify as religious, to explore how they currently deal with their worldview during counseling for prenatal anomaly screening and regarding their perspectives on heritable ge…
Engagement of patients and the public in personalised prevention in Europe using genomic information
Introduction: Personalised prevention using genomic information requires active involvement from patients and the public, who should be well-informed and empowered to make healthcare decisions that reflect their personal values. We aimed to map engagement practises, and assess the extent and types of engagement methods used in the field of personalised prevention of common chronic conditions using genomic information. Methods: A scoping review on…
Towards societal alignment in the governance of human germline genome editing in the Netherlands
Although international consensus exists among scientists that clinical application of human germline genome editing (HGGE) should not occur in the near future, the Dutch parliament is considering significantly expanding HGGE research options. Because HGGE policy determines medical practice and potentially the lives of future generations, it is crucial that public values are safeguarded in pertinent decisions. This study applies the governance eco…
Personalised prevention
Enhancing patient and public engagement in personalised prevention requires more focus on communication, inclusivity, and secure data use. The findings provide actionable insights, promoting systematic engagement across Research, Care, and Governance. Clear information about prevention strategies and treatment options must be accessible, while diverse voices should be represented in decision-making. Collaboration with communities and better use o…
Dutch Christian Faith Leaders Deliberating Human Germline Gene Editing
While human germline gene editing (HGGE) is not allowed, the World Health Organization and others called for public dialogue to clarify the values at stake. Some values may be rooted in religion, such as Christianity, and relevant to religious communities and wider society. In-depth interviews (N = 16) were conducted with Dutch Christian faith leaders in 2019 and 2024. Participants were asked about their views and underlying values, their possibl…
Medicine (8 works) · Political science (7 works) · BRCA gene mutations in cancer (4 works) · Computer Science (4 works) · Law (4 works) · Nursing (4 works) · Psychology (4 works) · Public health (4 works) · Public relations (4 works) · Qualitative research (4 works)