2024
Jansen, Sammie; Kamphorst, Bart A.; Mulder, Bob; van Kamp, Irene; Boekhold, Sandra; van den hazel, Peter; Verweij, Marcel
Ethics of early detection of disease risk factors: A scoping review Journal Article
In: BMC Medical Ethics, vol. 25, 2024.
Abstract | Links | BibTeX | Tags: Early detection, Environmental health, Ethics, Prevention, Public health, Risk Factors, Scoping review, Screening
@article{nokey,
title = {Ethics of early detection of disease risk factors: A scoping review},
author = {Sammie Jansen and Bart A. Kamphorst and Bob Mulder and Irene van Kamp and Sandra Boekhold and Peter van den hazel and Marcel Verweij},
url = {https://www.esdit.nl/wp-content/uploads/s12910-024-01012-4.pdf},
doi = {10.1186/s12910-024-01012-4},
year = {2024},
date = {2024-03-05},
urldate = {2024-03-05},
journal = {BMC Medical Ethics},
volume = {25},
abstract = {Background: Scientific and technological advancements in mapping and understanding the interrelated pathways through which biological and environmental exposures affect disease development create new possibilities for detecting disease risk factors. Early detection of such risk factors may help prevent disease onset or moderate the disease course, thereby decreasing associated disease burden, morbidity, and mortality. However, the ethical implications of screening for disease risk factors are unclear and the current literature provides a fragmented and case-by-case picture.
Methods: To identify key ethical considerations arising from the early detection of disease risk factors, we performed a systematic scoping review. The Scopus, Embase, and Philosopher’s Index databases were searched for peer-reviewed, academic records, which were included if they were written in English or Dutch and concerned the ethics of (1) early detection of (2) disease risk factors for (3) disease caused by environmental factors or gene-environment interactions. All records were reviewed independently by at least two researchers.
Results: After screening 2034 titles and abstracts, and 112 full papers, 55 articles were included in the thematic synthesis of the results. We identified eight common ethical themes: (1) Reliability and uncertainty in early detection, (2) autonomy, (3) privacy, (4) beneficence and non-maleficence, (5) downstream burdens on others, (6) responsibility, (7) justice, and (8) medicalization and conceptual disruption. We identified several gaps in the literature, including a relative scarcity of research on ethical considerations associated with environmental preventive health interventions, a dearth of practical suggestions on how to address expressed concerns about overestimating health capacities, and a lack of insights into preventing undue attribution of health responsibility to individuals.
Conclusions: The ethical concerns arising with the early detection of risk factors are often interrelated and complex. Comprehensive ethical analyses are needed that are better embedded in normative frameworks and also assess and weigh the expected benefits of early risk factor detection. Such research is necessary for developing and implementing responsible and fair preventive health policies.},
keywords = {Early detection, Environmental health, Ethics, Prevention, Public health, Risk Factors, Scoping review, Screening},
pubstate = {published},
tppubtype = {article}
}
Background: Scientific and technological advancements in mapping and understanding the interrelated pathways through which biological and environmental exposures affect disease development create new possibilities for detecting disease risk factors. Early detection of such risk factors may help prevent disease onset or moderate the disease course, thereby decreasing associated disease burden, morbidity, and mortality. However, the ethical implications of screening for disease risk factors are unclear and the current literature provides a fragmented and case-by-case picture.
Methods: To identify key ethical considerations arising from the early detection of disease risk factors, we performed a systematic scoping review. The Scopus, Embase, and Philosopher’s Index databases were searched for peer-reviewed, academic records, which were included if they were written in English or Dutch and concerned the ethics of (1) early detection of (2) disease risk factors for (3) disease caused by environmental factors or gene-environment interactions. All records were reviewed independently by at least two researchers.
Results: After screening 2034 titles and abstracts, and 112 full papers, 55 articles were included in the thematic synthesis of the results. We identified eight common ethical themes: (1) Reliability and uncertainty in early detection, (2) autonomy, (3) privacy, (4) beneficence and non-maleficence, (5) downstream burdens on others, (6) responsibility, (7) justice, and (8) medicalization and conceptual disruption. We identified several gaps in the literature, including a relative scarcity of research on ethical considerations associated with environmental preventive health interventions, a dearth of practical suggestions on how to address expressed concerns about overestimating health capacities, and a lack of insights into preventing undue attribution of health responsibility to individuals.
Conclusions: The ethical concerns arising with the early detection of risk factors are often interrelated and complex. Comprehensive ethical analyses are needed that are better embedded in normative frameworks and also assess and weigh the expected benefits of early risk factor detection. Such research is necessary for developing and implementing responsible and fair preventive health policies.
Methods: To identify key ethical considerations arising from the early detection of disease risk factors, we performed a systematic scoping review. The Scopus, Embase, and Philosopher’s Index databases were searched for peer-reviewed, academic records, which were included if they were written in English or Dutch and concerned the ethics of (1) early detection of (2) disease risk factors for (3) disease caused by environmental factors or gene-environment interactions. All records were reviewed independently by at least two researchers.
Results: After screening 2034 titles and abstracts, and 112 full papers, 55 articles were included in the thematic synthesis of the results. We identified eight common ethical themes: (1) Reliability and uncertainty in early detection, (2) autonomy, (3) privacy, (4) beneficence and non-maleficence, (5) downstream burdens on others, (6) responsibility, (7) justice, and (8) medicalization and conceptual disruption. We identified several gaps in the literature, including a relative scarcity of research on ethical considerations associated with environmental preventive health interventions, a dearth of practical suggestions on how to address expressed concerns about overestimating health capacities, and a lack of insights into preventing undue attribution of health responsibility to individuals.
Conclusions: The ethical concerns arising with the early detection of risk factors are often interrelated and complex. Comprehensive ethical analyses are needed that are better embedded in normative frameworks and also assess and weigh the expected benefits of early risk factor detection. Such research is necessary for developing and implementing responsible and fair preventive health policies.
2023
Kamphorst, Bart A.; Henschke, Adam
Public health measures and the rise of incidental surveillance: Considerations about private informational power and accountability Journal Article
In: Ethics and Information Technology, vol. 25, iss. 4, 2023.
Abstract | Links | BibTeX | Tags: Accountability, Justification, Pandamic response, Public health, Surveillance
@article{nokey,
title = {Public health measures and the rise of incidental surveillance: Considerations about private informational power and accountability },
author = {Bart A. Kamphorst and Adam Henschke},
doi = {10.1007/s10676-023-09732-8},
year = {2023},
date = {2023-11-16},
urldate = {2023-11-16},
journal = {Ethics and Information Technology},
volume = {25},
issue = {4},
abstract = {The public health measures implemented in response to the COVID-19 pandemic have resulted in a substantially increased shared reliance on private infrastructure and digital services in areas such as healthcare, education, retail, and the workplace. This development has (i) granted a number of private actors significant (informational) power, and (ii) given rise to a range of digital surveillance practices incidental to the pandemic itself. In this paper, we reflect on these secondary consequences of the pandemic and observe that, even though collateral data disclosure and additional activity monitoring appears to have been generally socially accepted as inevitable consequences of the pandemic, part and parcel of a larger conglomeration of emergency compromises, these increased surveillance practices were not directly justified by appeals to solidarity and public health in the same way that the instigating public health measures were. Based on this observation, and given the increased reliance on private actors for maintaining the digital space, we argue that governments have a duty to (i) seek and ensure that there are justifications for collateral data disclosure and activity monitoring by private actors in the context of (future) public health emergencies like the COVID-19 pandemic, and (ii) regulate and provide accountability mechanisms for and oversight over these private surveillance practices on par with governmental essential services that engage in surveillance activities.},
keywords = {Accountability, Justification, Pandamic response, Public health, Surveillance},
pubstate = {published},
tppubtype = {article}
}
The public health measures implemented in response to the COVID-19 pandemic have resulted in a substantially increased shared reliance on private infrastructure and digital services in areas such as healthcare, education, retail, and the workplace. This development has (i) granted a number of private actors significant (informational) power, and (ii) given rise to a range of digital surveillance practices incidental to the pandemic itself. In this paper, we reflect on these secondary consequences of the pandemic and observe that, even though collateral data disclosure and additional activity monitoring appears to have been generally socially accepted as inevitable consequences of the pandemic, part and parcel of a larger conglomeration of emergency compromises, these increased surveillance practices were not directly justified by appeals to solidarity and public health in the same way that the instigating public health measures were. Based on this observation, and given the increased reliance on private actors for maintaining the digital space, we argue that governments have a duty to (i) seek and ensure that there are justifications for collateral data disclosure and activity monitoring by private actors in the context of (future) public health emergencies like the COVID-19 pandemic, and (ii) regulate and provide accountability mechanisms for and oversight over these private surveillance practices on par with governmental essential services that engage in surveillance activities.
Macnisch, Kevin; Henschke, Adam (Ed.)
The Ethics of Surveillance in Times of Emergency Book
Oxford University Press, 2023.
Abstract | Links | BibTeX | Tags: Applied ethics, Emergency ethics, Pandamics, Public health, Surveillance
@book{nokey,
title = {The Ethics of Surveillance in Times of Emergency},
editor = {Kevin Macnisch and Adam Henschke},
url = {https://www.esdit.nl/9780192688309_web/},
doi = {10.1093/oso/9780192864918.001.0001},
year = {2023},
date = {2023-11-02},
urldate = {2023-11-02},
publisher = {Oxford University Press},
abstract = {The Covid-19 pandemic is arguably the first international emergency of the twenty-first century. In order to respond to this emergency, countries and governments around the world were forced to engage in a range of actions and policies that would not otherwise have been permitted. Looking in particular at the use of surveillance technologies, this book examines the challenge of ethics in emergencies. What can states do to keep their populations safe, what can citizens expect of their governments, and when are those government actions unjustified? By looking at the use of surveillance in times of emergency, this book explores ethical, philosophical, political, and social concepts, challenges them, and offers a set of views on where those concepts may evolve into the future. As a global population, we will be faced with emergencies, and it is possible that these will also be global in their impact. The ethics of surveillance in times of emergency is both of its time, and ongoing; we must learn our lessons from the last emergency, to be prepared for the next ones.},
keywords = {Applied ethics, Emergency ethics, Pandamics, Public health, Surveillance},
pubstate = {published},
tppubtype = {book}
}
The Covid-19 pandemic is arguably the first international emergency of the twenty-first century. In order to respond to this emergency, countries and governments around the world were forced to engage in a range of actions and policies that would not otherwise have been permitted. Looking in particular at the use of surveillance technologies, this book examines the challenge of ethics in emergencies. What can states do to keep their populations safe, what can citizens expect of their governments, and when are those government actions unjustified? By looking at the use of surveillance in times of emergency, this book explores ethical, philosophical, political, and social concepts, challenges them, and offers a set of views on where those concepts may evolve into the future. As a global population, we will be faced with emergencies, and it is possible that these will also be global in their impact. The ethics of surveillance in times of emergency is both of its time, and ongoing; we must learn our lessons from the last emergency, to be prepared for the next ones.
2020
Tempels, Tjidde; Blok, Vincent; Verweij, Marcel
Food Vendor Beware! On Ordinary Morality and Unhealthy Marketing Journal Article
In: Food Ethics, 5(1-2), [3], 2020.
Links | BibTeX | Tags: Food Ethics, Public health
@article{Tempels2020,
title = {Food Vendor Beware! On Ordinary Morality and Unhealthy Marketing},
author = {Tjidde Tempels and Vincent Blok and Marcel Verweij},
doi = { https://doi.org/10.1007/s41055-019-00064-2 },
year = {2020},
date = {2020-01-01},
urldate = {2020-01-01},
journal = {Food Ethics, 5(1-2), [3]},
keywords = {Food Ethics, Public health},
pubstate = {published},
tppubtype = {article}
}
Tempels, Tjidde; Blok, Vincent; Verweij, Marcel
Injustice in Food-Related Public Health Problems: A Matter of Corporate Responsibility Journal Article
In: Business Ethics Quarterly, 30(3), 388-413, 2020.
Links | BibTeX | Tags: Corporate Responsibility, Food Ethics, Public health
@article{Tempels2020b,
title = {Injustice in Food-Related Public Health Problems: A Matter of Corporate Responsibility},
author = {Tjidde Tempels and Vincent Blok and Marcel Verweij},
doi = {10.1017/beq.2019.41},
year = {2020},
date = {2020-01-01},
urldate = {2020-01-01},
journal = {Business Ethics Quarterly, 30(3), 388-413},
keywords = {Corporate Responsibility, Food Ethics, Public health},
pubstate = {published},
tppubtype = {article}
}