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ETHICS EVALUATION REVEALING DECISION-MAKER MOTIVES: A CASE OF NEONATAL SCREENING

Published online by Cambridge University Press:  10 April 2018

Véronique Raimond Open the ORCID record for Véronique Raimond [Opens in a new window] ,
Cléa Sambuc  and
Leslie Pibouleau
Véronique Raimond
Affiliation:
Haute Autorité de santé, Department of Economic and Public Health Evaluationv.raimond@has-sante.fr
Cléa Sambuc
Affiliation:
Haute Autorité de santé, Department of Economic and Public Health Evaluation
Leslie Pibouleau
Affiliation:
Haute Autorité de santé, Department of Economic and Public Health Evaluation
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Abstract

Objectives: This paper aims to describe the added value of combining cost-effectiveness and ethical evaluations when the preferences of the decision maker toward cost-effectiveness evaluation outcomes are not known, with the French national neonatal screening of cystic fibrosis (CF) as a case-study.

Methods: A cost-effectiveness analysis comparing four CF neonatal screening strategies, with or without DNA testing, was performed. Ethical positions toward their outcomes were described. In addition, a post-hoc analysis of the ethical issues being considered relevant from the decision-makers’ perspective was conducted.

Results: Two strategies were found equally cost-effective. Among them, choosing the non-DNA or a DNA-based strategy constrains the decision maker to render a judgement between different ethical issues or disagreements associated with the screening program.

Conclusions: The analysis supports the relevance of combining cost-effectiveness and ethics evaluation in developing health policy, as a way to reveal or clarify the motives associated with health. The choice of the decision maker to favor the DNA-based strategy, which was not originally recommended, creates the opportunity to make explicit the role played by ethical issues in the decision.

Keywords

Cost-effectivenessEthicsScreening
Type
Assessment
Information
International Journal of Technology Assessment in Health Care , Volume 34 , Issue 2 , 2018 , pp. 189 - 195
Copyright
Copyright © Cambridge University Press 2018 

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References

REFERENCES

1. Association française pour le dépistage et la prévention des handicaps de l'enfant. Bilan d'activité 2015 [Internet]. Paris: AFDPHE; 2015. http://www.afdphe.org/sites/default/files/bilan_afdphe_2015.pdf (accessed March 14, 2018).Google Scholar
2. Haute Autorité de santé. Place de la stratégie couplant les dosages de la trypsine immunoréactive (TIR) et de la protéine associée à la pancréatite (PAP) dans le dépistage systématique de la mucoviscidose en France. [Internet]. Saint-Denis la Plaine: HAS; 2015. http://www.has-sante.fr/portail/upload/docs/application/pdf/2015-06/place_de_la_strategie_couplant_les_dosages_de_la_tir_et_de_la_pap_dans_le_depistage_systematique_de_la_mucoviscidose_en_france.pdf (accessed March 14, 2018).Google Scholar
3. Norheim, OF, Baltussen, R, Johri, M, et al. Guidance on priority setting in health care (GPS-Health): The inclusion of equity criteria not captured by cost-effectiveness analysis. Cost Eff Resour Alloc CE. 2014;12:18.Google Scholar
4. Hofmann, BM. Why ethics should be part of health technology assessment. Int J Technol Assess Health Care. 2008;24:423-429.Google Scholar
5. Saarni, SI, Hofmann, B, Lampe, K, et al. Ethical analysis to improve decision-making on health technologies. Bull World Health Organ. 2008;86:617-623.CrossRefGoogle ScholarPubMed
6. Hofmann, B, Lysdahl, KB, Droste, S. Evaluation of ethical aspects in health technology assessment: More methods than applications? Expert Rev Pharmacoecon Outcomes Res. 2015;15:5-7.CrossRefGoogle ScholarPubMed
7. Assasi, N, Schwartz, L, Tarride, J-E, O'Reilly, D, Goeree, R. Barriers and facilitators influencing ethical evaluation in health technology assessment. Int J Technol Assess Health Care. 2015;31:113-123.Google Scholar
8. Scott, AM, Bond, K, Gutiérrez-Ibarluzea, I, Hofmann, B, Sandman, L. Quality assessment of ethics analyses for health technology assessment. Int J Technol Assess Health Care. 2016;32:362-369.CrossRefGoogle Scholar
9. Vaincre la Mucoviscidose, Institut national d’études démographiques. Registre français de la mucoviscidose – Bilan des données 2014 [Internet]. Paris: Vaincre la mucoviscidose; 2016. http://www.vaincrelamuco.org/sites/default/files/rapport_registre_2014.pdf (accessed March 14, 2018).Google Scholar
10. Grosse, SD. Showing value in newborn screening: Challenges in quantifying the effectiveness and cost-effectiveness of early detection of phenylketonuria and cystic fibrosis. Healthcare. 2015;3:1133-1157.CrossRefGoogle ScholarPubMed
11. Haute Autorité de santé. Le dépistage néonatal systématique de la mucoviscidose en France: État des lieux et perspectives après 5 ans de fonctionnement [Internet]. Saint-Denis la Plaine: HAS; 2009 Jun [cited 2015 Jun 22]. http://www.has-sante.fr/portail/jcms/c_765713/fr/le-depistage-neonatal-systematique-de-la-mucovsicidose-en-france-etat-des-lieux-et-perspectives-apres-5-ans-de-fonctionnement (accessed March 14, 2018).Google Scholar
12. Sarles, J, Berthézène, P, Le Louarn, C, et al. Combining immunoreactive trypsinogen and pancreatitis-associated protein assays, a method of newborn screening for cystic fibrosis that avoids DNA analysis. J Pediatr. 2005;147:302-305.Google Scholar
13. Sarles, J, Giorgi, R, Berthézène, P, et al. Neonatal screening for cystic fibrosis: Comparing the performances of IRT/DNA and IRT/PAP. J Cyst Fibros Off J Eur Cyst Fibros Soc. 2014;13:384-390.Google Scholar
14. Association française pour le dépistage et la prévention des handicaps de l'enfant. Bilan d'activité 2014 [Internet]. Paris: AFDPHE; 2014 [cited 2016 Jan 14]. http://www.afdphe.org/sites/default/files/bilan_afdphe_2014.pdf (accessed March 14, 2018).Google Scholar
15. Drummond, MF, Sculpher, MJ, Torrance, GW, O'Brien, BJ, Stoddart, GL. Methods for the economic evaluation of health care programmes. 3rd ed. Oxford; New York: OUP Oxford; 2005. 400 p.Google Scholar
16. Haute Autorité de santé. Choices in methods for economic evaluation. [Internet]. Saint-Denis la Plaine: HAS; 2012. (Methodological guide). http://www.has-sante.fr/portail/upload/docs/application/pdf/2012-10/choices_in_methods_for_economic_evaluation.pdf (accessed March 14, 2018).Google Scholar
17. Husereau, D, Drummond, M, Petrou, S, et al. Consolidated Health Economic Evaluation Reporting Standards (CHEERS) statement. Int J Technol Assess Health Care. 2013;29:117-122.CrossRefGoogle ScholarPubMed
18. Gold, MR. Cost-effectiveness in health and medicine. New York: Oxford University Press; 1996. 462 p.Google Scholar
19. Haute Autorité de santé. Assessment of ethical aspects [Internet]. Saint-Denis la Plaine: HAS; 2013 [cited 2015 Jun 22]. (Methodological guide). http://www.has-sante.fr/portail/upload/docs/application/pdf/2014-11/assessment_of_ethical_aspects.pdf (accessed March 14, 2018).Google Scholar
20. Beauchamp, TL, Childress, JF. Principles of biomedical ethics. 4th revised edition. New York: Oxford University Press Inc; 1994. 556 p.Google Scholar
21. Nshimyumukiza, L, Bois, A, Daigneault, P, et al. Cost effectiveness of newborn screening for cystic fibrosis: A simulation study. J Cyst Fibros. 2014;13:267-274.Google Scholar
22. van der Ploeg, CPB, van den Akker-van Marle, ME, Vernooij-van Langen, AMM, et al. Cost-effectiveness of newborn screening for cystic fibrosis determined with real-life data. J Cyst Fibros. 2015;14:194-202.CrossRefGoogle ScholarPubMed
23. Seror, V, Cao, C, Roussey, M, Giorgi, R. PAP assays in newborn screening for cystic fibrosis: A population-based cost-effectiveness study. J Med Screen. 2016;23:62-69.CrossRefGoogle ScholarPubMed
24. Richardson, HS. Specifying norms as a way to resolve concrete ethical problems. Philos Public Aff. 1990;19:279-310.Google Scholar
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