Ethics of early detection of disease risk factors: A scoping review

SNG Jansen*, BA Kamphorst, BC Mulder, I van Kamp, S Boekhold, P van den Hazel, MF Verweij

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

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.
Original languageEnglish
Article number25
Pages (from-to)1-16
Number of pages16
JournalBMC Medical Ethics
Volume25
Issue number1
DOIs
Publication statusPublished - 5 Mar 2024

Bibliographical note

Publisher Copyright:
© The Author(s) 2024.

Funding

This research was funded by the European Union’s Horizon 2020 research and innovation program under grant agreement No 874724 (Equal-Life). Equal-Life is part of the European Human Exposome Network.

FundersFunder number
Horizon 2020 Framework Programme874724

    Keywords

    • Early detection
    • Environmental health
    • Ethics
    • Prevention
    • Public health
    • Risk factors
    • Scoping review
    • Screening

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