Ethics and early detection of disease risk factors

Title	Ethics of early detection of disease risk factors: A scoping review
Source	Sammie N.G. Jansen*, Bart A. Kamphorst, Bob C. Mulder, Irene van Kamp, Sandra Boekhold, Peter Van den Hazel, Marcel F. Verweij (2024)  Journal BMC Medical Ethics, Volume25 https://doi.org/10.1186/s12910-024-01012-4
Level of evidence	Review
What	Scoping review to identify ethical considerations around early detection of disease risk factors, covering articles published in Europe, USA, Canada and Australia in the Scopus, Embase, Philosopher’s Index databases.
Findings	We found eight ethical themes: (1) Reliability and uncertainty in early detection of disease risk factors (2) Autonomy (3) Privacy (4) Beneficence and non-maleficence (5) Downstream burdens on others (6) Responsibility (7) Justice (8) Medicalization and conceptual disruption. Gaps in the literature include: ·      Ethical considerations arising from environmental preventive health interventions. These include potential stigmatization of living environments or neighborhoods, and how to select and justify which environmental aspects receive research or policy attention.  Also, how to balance the promotion of human health with other values such as species preservation, ecological systems and landscape aesthetics. ·      Practical ways to avoid over-estimating health system capacities. ·      Ways to prevent over-attribution of health responsibility to individuals.
Recommendations	For researchers: Conduct further research into ethical considerations of preventive interventions in the physical (shared) environment, focusing on: Autonomy gaps: Investigate the sources of autonomy gaps in relation to early health screening and develop a wider set of mitigation strategies. Understanding how such gaps arise and can be resolved is key to decreasing inequalities in health literacy competencies. Early detection of disease risk factors could lead to assigning too much individual responsibility for health and disease, and shift attention and responsibility away from governments, industries, and employers. A first step should be to acknowledge that responsibility for health is not a zero-sum game: more responsibility for one actor does not imply less for another. Moreover, a key element for the development of health policies will be to reflect on (and ensure) a fair allocation of institutional responsibility for health. Inclusive research strategies: Include more non-Western perspectives on the ethics of detection of early risk factors to inform context-specific policy decisions. Normative frameworks: Explicitly and systematically embed bioethical analyses of detection of early disease risk factors into normative frameworks – to highlight new potential evaluation methods. Cost analysis: Run prospective studies into the costs of preventive screening – specifically, preventive medicine linked to screening programmes, downstream costs of medicalization, and the connection between adopting preventive health strategies and (potentially unrealistic) reallocations of funds and healthcare resources, to inform future decision making.
Target audience:	Clinical and policy professionals in the field of early detection of disease risk factors. Academic bioethicists.

Ethics and presymptomatic screening: Focus group study:

Title	Presymptomatic Screening for Risks to Children’s Mental Health: Ethical Considerations from a European Focus Group Study with Mental Health Professionals
Source	Sammie N. G. Jansen; Bob C. Mulder; Sandra Boekhold (2025). Bioethical Inquiry https://doi.org/10.1007/s11673-025-10473-0
Level of evidence	Direct/qualitative research evidence
What	Six focus group discussions on potential risks and benefits of presymptomatic screening, involving 34 and adolescent mental health professionals (clinical, educational, or policy settings) based in North Macedonia, Slovenia, Italy, Germany, the Netherlands, Sweden.
Findings	We identified three main themes: 1) Promises and concerns about early screening. These include potential stigmatization and discrimination, ability to act on screening results, and the reliability and potential individual side-effects of screening tools. 2) Additional considerations. For example, biomarker screenings should include social and environmental factors to provide a holistic understanding of the child’s risk profile. Communication with children and parents should highlight screening results as predictive rather than diagnostic. 3) Implications for healthcare systems and society, including healthcare systems’ capacity to implement screening activities and follow-up procedures, and the need to balance individual side-effects of screening tools against expected population benefits. Our findings show the importance of considering risks associated with the development and implementation of presymptomatic screening to children’s mental health, and of balancing benefits and harms for individuals and society.
Recommendations	For researchers: Conduct further ethical and societal studies into presymptomatic screening, focusing on assessing and balancing risks and benefits for children’s well-being and societal development. For policymakers: When considering policy options for promoting children’s mental health: ·      Weigh the potential benefits of early screening against alternative interventions such as improving living environments and expanding social welfare policies. ·      Aim to balance long-term public health benefits of prevention programs against short-term demands and pressures on healthcare systems.
Target audience	Child and adolescent mental health professionals in clinical, educational, or policy settings, excluding prenatal phases.