Hostname: page-component-cd9895bd7-mkpzs Total loading time: 0 Render date: 2024-12-25T16:50:33.907Z Has data issue: false hasContentIssue false

The role of ethical analysis in conducting a health technology assessment of medical treatments for gender dysphoria

Published online by Cambridge University Press:  14 November 2022

Samuli I. Saarni*
Affiliation:
Department of Psychiatry, University of Helsinki, Helsinki, Finland Department of Medical Ethics, University of Turku, Turku, Finland
Susanne Uusitalo
Affiliation:
Turku Institute for Advanced Studies, University of Turku, Turku, Finland Department of Philosophy, Contemporary History and Political Science, University of Turku, Turku, Finland
Ilona Autti-Rämö
Affiliation:
Council of Choices in Health Care, Ministry of Social Affairs and Health, Helsinki, Finland Children’s Hospital, Department of Child Neurology, University of Helsinki, Helsinki, Finland
*
*Author for correspondence: Samuli I. Saarni, E-mail: samuli.saarni@gmail.com

Abstract

Objectives

Treatment seeking for gender dysphoria (GD) has increased manifold in western countries. This has led to increased interest on evidence-base of treatments, but also discussions related to human rights, identity politics, gender-related structures, and medicalization. Combining these discourses into coherent health policy is difficult. Health technology assessment (HTA) is the golden standard for assessing whether a medical intervention should be included in a health system. A comprehensive HTA should include medical, safety, and cost-utility perspectives, but often also ethical, societal, organizational, and legal concerns. Still, ethics is often omitted in practice. This paper aims to demonstrate how integrated ethical analysis influenced a HTA of complex and controversial topics like GD.

Methods

A HTA of medical treatments of GD was conducted using integrated ethical analysis based on the EUnetHTA-model. This integrates ethical thinking into the whole HTA, explicitly analyses ethical topics, and balances arguments using several ethical theories.

Results

Integrating ethics had a significant impact on the HTA process and recommendations. It influenced how the HTA was planned and executed, emphasized autonomy and justice when creating the recommendations, and helped the workgroup to understand the complexity of combining different stakeholders’ discourses. Tensions between scientific evidence, expectations, and values became explicit.

Conclusions

Comprehensive HTA provides an important, integrative approach to considering complex and controversial topics in health systems. HTA emphasizes multidisciplinary and multi-stakeholder approach but simultaneously forces a pragmatic, results-oriented, and evidence-based approach on all argumentation. Ethical analysis can facilitate interactions between stakeholders, bridge different discourses, and help formulate widely acceptable guidelines and policy decisions.

Type
Method
Copyright
© The Author(s), 2022. Published by Cambridge University Press

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Kaltiala-Heino, R, Työläjärvi, M, Lindberg, N. Gender dysphoria in adolescent population: A 5-year replication study. Clin Child Psychol Psychiatry. 2019;24:379387.CrossRefGoogle ScholarPubMed
Kcomt, L. Profound health-care discrimination experienced by transgender people: Rapid systematic review. Soc Work Health Care. 2019;58:201219.CrossRefGoogle ScholarPubMed
Bradford, J, Reisner, SL, Honnold, JA, Xavier, J. Experiences of transgender-related discrimination and implications for health: Results From the virginia transgender health initiative study. Am J Public Health. 2013;103:18201829.CrossRefGoogle ScholarPubMed
World Health Organization. ICD-10 Version: 2016 [Internet] [cited 14 August 2022]. Available from: https://icd.who.int/browse10/2016/en#/F64.Google Scholar
American Psychiatric Association. Diagnostic and statistical manual of mental disorders. 5th ed. Washington, DC: American Psychiatric Association; 2013.Google Scholar
World Health Organization. ICD-11 for Mortality and Morbidity Statistics [Internet] [cited 14 August 2022]. Available from: https://icd.who.int/browse11/l-m/en.Google Scholar
The Cass Review. Independent Review of Gender Identity Services for Children and Young People: Interim Report 112 [Internet] [cited 14 August 2022]. Available from: https://cass.independent-review.uk/publications/interim-report/.Google Scholar
Saarni, S, Hofmann, B, Lampe, K, et al. Ethical analysis to improve decision-making on health technologies. Bull World Health Organ. 2008;86:617623.CrossRefGoogle ScholarPubMed
European Network for Health Technology Assessment (EUnetHTA). EUnetHTA Joint Action 2 Work Package 8. HTA Core Model® version 3.0 (pdf)EU 2016 [Internet] [cited 14 August 2022]. Available from: www.htacoremodel.info/BrowseModel.aspx.Google Scholar
Lampe, K, Mäkelä, M, Garrido, MV, et al. The HTA core model: A novel method for producing and reporting health technology assessments. Int J Technol Assess Health Care. 2009;25:920.Google ScholarPubMed
Refolo, P, Bond, K, Bloemen, B, et al. Core competencies for ethics experts in health technology assessment. Int J Technol Assess Health Care. 2020;36:534539.CrossRefGoogle ScholarPubMed
Lysdahl, KB, Hofmann, B. Complex health care interventions: Characteristics relevant for ethical analysis in health technology assessment. GMS Health Technol Assess. 2016:12:Doc01.Google ScholarPubMed
Lysdahl, KB, Mozygemba, K, Burns, J, et al. Comprehensive assessment of complex technologies: Integrating various aspects in health technology assessment. Int J Technol Assess Health Care. 2017;33:570576.CrossRefGoogle ScholarPubMed
Saarni, SI, Braunack-Mayer, A, Hofmann, B, van der Wilt, GJ. Different methods for ethical analysis in health technology assessment: An empirical study. Int J Technol Assess Health Care. 2011;27:305312.Google ScholarPubMed
Gerritse, K, Hartman, L, Antonides, MF, et al. Moral challenges in transgender care: A thematic analysis based on a focused ethnography. Arch Sex Behav. 2018;47:23192333.CrossRefGoogle ScholarPubMed
Street, J, Stafinski, T, Lopes, E, Menon, D. Defining the role of the public in health technology assessment (HTA) and HTA-informed decision-making processes. Int J Technol Assess Health Care. 2020;36:8795.CrossRefGoogle ScholarPubMed
Beauchamp, T, Childress, J. Principles of biomedical ethics. New York: Oxford University Press; 2013.Google Scholar
Kaltiala-Heino, R, Bergman, H, Työläjärvi, M, Frisen, L. Gender dysphoria in adolescence: Current perspectives. Adolesc Health Med Ther. 2018;9:3141.Google ScholarPubMed
Gotzsche, PC, Ioannidis, JPA. Content area experts as authors: Helpful or harmful for systematic reviews and meta-analyses? BMJ. 2012;345:e7031.Google ScholarPubMed
Lysdahl, KB, Oortwijn, W, van der Wilt, GJ, et al. Ethical analysis in HTA of complex health interventions. BMC Med Ethics. 2016;17:16.CrossRefGoogle ScholarPubMed
Supplementary material: File

Saarni et al. supplementary material

Saarni et al. supplementary material

Download Saarni et al. supplementary material(File)
File 35.7 KB