Els Maeckelberghe
Biographic Data
| ID | 4688596 |
|---|---|
| NAME | Els Maeckelberghe |
| GIVEN NAMES | Els |
| FAMILY NAME | Maeckelberghe |
| SIGNATURE | MAECKELBERGHE E |
| AFFILIATIONS | University Medical Center Groningen |
| ORCID | 0000-0002-3983-6089 |
| VERIFIED | Yes |
| TOTAL WORKS | 10 |
| TOTAL CITATIONS | 2 |
| WORKS AS AUTHOR | 10 |
| WORKS AS EDITOR | 0 |
| FIRST PUBLICATION YEAR | 2000 |
| LATEST PUBLICATION YEAR | 2025 |
| H-INDEX | 1 |
AI-Inclusivity in Healthcare
This paper motivates institutional epistemic trust as an important ethical consideration informing the responsible development and implementation of artificial intelligence (AI) technologies (or AI-inclusivity) in healthcare. Drawing on recent literature on epistemic trust and public trust in science, we start by examining the conditions under which we can have institutional epistemic trust in AI-inclusive healthcare systems and their members as …
Challenges and opportunities during the Covid-19 pandemic
The COVID-19 pandemic has had wide-ranging implications on the academic community and there have been numerous commentaries on the effects of the pandemic on qualitative health research. However, the vulnerabilities faced by participants and researchers during the pandemic have remained underexplored. Addressing this gap, this reflective article discusses the intersecting challenges and opportunities arising for participants and researchers in qu…
‘It's Powerful’ The impact of involving children and young people in developing paediatric research agendas
INTRODUCTION: There is a growing consensus that children and young people (CYP) should be involved in matters that concern them. Progress is made in involving CYP in developing pediatric research agendas (PRAs), although the impact of their involvement remains unknown. We aimed to evaluate the impact of involving CYP in developing PRAs and assess the extent to which postpatient and public involvement (post-PPI) activities were planned. METHODS: W…
How to Ensure Inclusivity in Large-Scale General Population Cohort Studies? Lessons Learned with Regard to Including and Assessing Sex, Gender, and Sexual Orientation
Despite recent advances in the measurement of sex, gender, and sexual orientation in large-scale cohort studies, the three concepts are still gaining relatively little attention, may be mistakenly equated, or non-informatively operationalized. The resulting imprecise or lacking information hereon in studies is problematic, as sex, gender, and sexual orientation are important health-related factors. Omission of these concepts from general populati…
Knowledge, health beliefs and attitudes towards dementia and dementia risk reduction among descendants of people with dementia
Although the research aim was to evaluate the knowledge, beliefs and attitudes towards dementia and DRR, sharing experiences of having a parent with dementia seemed a prerequisite for considering participants' own risk of developing dementia and participating in a DRR programme. Knowledge of dementia and DRR was limited. Due to unawareness of the possibility of reducing dementia risk, participants were hesitant about assessing their dementia risk…
Pediatric Brain Tumors
When talking about decisionmaking for children with a life-threatening condition, the death of children with brain tumors deserves special attention. The last days of the lives of these children can be particularly harsh for bystanders, and raise questions about the suffering of these children themselves. In the Netherlands, these children are part of the group for whom a wide range of end-of-life decisions are discussed, and questions raised. Wh…
Trust in Centralized Large-Scale Data Repository
Exponential increases in digital data and calls for participation in human research raise questions about when and why individuals voluntarily provide personal data. We conducted 36 in-depth interviews with ex-participants, participants, and nonparticipants in a biobank to identify key factors influencing trust in centralized large-scale data repository for human research. Our findings indicated that trust depends strongly on whether such data re…
Enhancing Reflection
There are no moral cookbooks--no algorithms for whipping up moral confections to suit every occasion. But more modest and flexible tools might still be useful for practical ethics. One team describes how professionals can be taught to use a framework for understanding moral problems
(Mis)Understanding Singer
Across the Generations in Feminist Theology
How to Ensure Inclusivity in Large-Scale General Population Cohort Studies? Lessons Learned with Regard to Including and Assessing Sex, Gender, and Sexual Orientation
Despite recent advances in the measurement of sex, gender, and sexual orientation in large-scale cohort studies, the three concepts are still gaining relatively little attention, may be mistakenly equated, or non-informatively operationalized. The resulting imprecise or lacking information hereon in studies is problematic, as sex, gender, and sexual orientation are important health-related factors. Omission of these concepts from general populati…
Across the Generations in Feminist Theology
(Mis)Understanding Singer
Enhancing Reflection
There are no moral cookbooks--no algorithms for whipping up moral confections to suit every occasion. But more modest and flexible tools might still be useful for practical ethics. One team describes how professionals can be taught to use a framework for understanding moral problems
Trust in Centralized Large-Scale Data Repository
Exponential increases in digital data and calls for participation in human research raise questions about when and why individuals voluntarily provide personal data. We conducted 36 in-depth interviews with ex-participants, participants, and nonparticipants in a biobank to identify key factors influencing trust in centralized large-scale data repository for human research. Our findings indicated that trust depends strongly on whether such data re…
Pediatric Brain Tumors
When talking about decisionmaking for children with a life-threatening condition, the death of children with brain tumors deserves special attention. The last days of the lives of these children can be particularly harsh for bystanders, and raise questions about the suffering of these children themselves. In the Netherlands, these children are part of the group for whom a wide range of end-of-life decisions are discussed, and questions raised. Wh…
Knowledge, health beliefs and attitudes towards dementia and dementia risk reduction among descendants of people with dementia
Although the research aim was to evaluate the knowledge, beliefs and attitudes towards dementia and DRR, sharing experiences of having a parent with dementia seemed a prerequisite for considering participants' own risk of developing dementia and participating in a DRR programme. Knowledge of dementia and DRR was limited. Due to unawareness of the possibility of reducing dementia risk, participants were hesitant about assessing their dementia risk…
How to Ensure Inclusivity in Large-Scale General Population Cohort Studies? Lessons Learned with Regard to Including and Assessing Sex, Gender, and Sexual Orientation
Despite recent advances in the measurement of sex, gender, and sexual orientation in large-scale cohort studies, the three concepts are still gaining relatively little attention, may be mistakenly equated, or non-informatively operationalized. The resulting imprecise or lacking information hereon in studies is problematic, as sex, gender, and sexual orientation are important health-related factors. Omission of these concepts from general populati…
Challenges and opportunities during the Covid-19 pandemic
The COVID-19 pandemic has had wide-ranging implications on the academic community and there have been numerous commentaries on the effects of the pandemic on qualitative health research. However, the vulnerabilities faced by participants and researchers during the pandemic have remained underexplored. Addressing this gap, this reflective article discusses the intersecting challenges and opportunities arising for participants and researchers in qu…
‘It's Powerful’ The impact of involving children and young people in developing paediatric research agendas
INTRODUCTION: There is a growing consensus that children and young people (CYP) should be involved in matters that concern them. Progress is made in involving CYP in developing pediatric research agendas (PRAs), although the impact of their involvement remains unknown. We aimed to evaluate the impact of involving CYP in developing PRAs and assess the extent to which postpatient and public involvement (post-PPI) activities were planned. METHODS: W…
AI-Inclusivity in Healthcare
This paper motivates institutional epistemic trust as an important ethical consideration informing the responsible development and implementation of artificial intelligence (AI) technologies (or AI-inclusivity) in healthcare. Drawing on recent literature on epistemic trust and public trust in science, we start by examining the conditions under which we can have institutional epistemic trust in AI-inclusive healthcare systems and their members as …
Medicine (8 works) · Psychology (7 works) · Sociology (6 works) · Computer Science (4 works) · Political science (4 works) · Ethics in Clinical Research (3 works) · Public relations (3 works) · Social Psychology (3 works) · Artificial Intelligence (2 works) · Developmental psychology (2 works)