Result card

  • LEG1: Is the voluntary participation of patients guaranteed properly?
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Is the voluntary participation of patients guaranteed properly?

Authors: Ingrid Wilbacher

Internal reviewers: Gottfried Endel

Acknowledgments: Hans Seyfried for voluntarily reviewing

Literature research

Usually it seems to be standard to assume that people want to participate in screening programmes, although the participation rate does not proof this assumption. In the literature search for the legal domain a critical discussion about the legal mandate for implementing a prevention register for hereditary coloncancer was found. A legally mandated cancer prevention and treatment tool for hereditary cancers, however, would mean that patients who have chosen not to participate in the programme would be called for check-ups, as well.{2} Although it addresses only the hereditary crc, the aspects are also interesting for general crc screening and invitation systems, especially in terms of refused screening participation. A repeated call to participate could be interpreted as an unwanted pressure.

Recent European studies report an average of 45% screening participation for FOBT (iFOBT, gFOBT): 19% in Croatia {3}; 30% in France {5}; 42,1% {6}, 52% {4} and between 61% and 64,7% {7} in the Netherlands; 60,6% in the UK {8}; 64,3% in Spain (Basque) {9}; 34,2% in Spain (Canaries) {10}, 49,7% in Italy {11}.

Legislation

Several legislations secure the right of access to (best) health care {12,13,14}, but less about refusal or forced participation. Usually the law takes the view that a patient wants' to have health services available.

Bodily harm is legally forbidden, except for physicians and related occupations in case of treatment and with the implicit understanding and consent of the patient. {15} Therefore it is more or less the non-refusal or the explicit consensus of the patient joining a (nationwide) screening program.

According to article 8 of the Convention for the Protection of Human Rights and Fundamental Freedoms {16}, Article 8, Everyone has the right to respect for his private and family life, his home and his correspondence. and There shall be no interference by a public authority with the exercise of this right except such […] for the protection of health or morals, […].

Court decisions

No international EUGH case law was found for diagnostic matters and voluntary participation. (search done in http://curia.europa.eu/juris/recherche.jsf?language=de – limitation to health sector, last 5 years – no results (3.5.2013)

The patient's right for non-treatment is discussed controversially (Several legal rules against euthanasia {17}, legislation about genetic testing {18}) and more or less just in the view of death.

Conclusion

-          Several legislations secure the right of access to (best) health care {12,1314}, but less about refusal or forced participation. Usually the law takes the view that a patient wants' to have health services available.

-          The invitation to participate in a screening program can be interpreted as "freedom in participation", if it is free of pressure or consequences, and if an objective and understandable information is provided. According to article 8 of the Convention for the Protection of Human Rights and Fundamental Freedoms {16}, Article 8, Everyone has the right to respect for his private and family life, his home and his correspondence. and There shall be no interference by a public authority with the exercise of this right except such […] for the protection of health or morals, […].

-          Usually it seems to be standard to assume that people want to participate in screening programmes, but this should be discussed critically if it comes to a legally mandated cancer prevention and treatment tool for (hereditary) cancers. Bodily harm is legally forbidden, except for physicians and related occupations in case of treatment and with the implicit understanding and consent of the patient. {15} Therefore it is more or less the non-refusal or the explicit consensus of the patient joining a (nationwide) screening program.

-          Different screening participation rates could be a sign for different information levels about the screening test and possible consequences

-          No international EUGH case law was found for diagnostic matters. (search done in http://curia.europa.eu/juris/recherche.jsf?language=de – limitation to health sector, last 5 years – no results (3.5.2013)

-          The patient's right for non-treatment is discussed controversially (Several legal rules against euthanasia {17}, legislation about genetic testing {18}) and more or less just in the view of death.

As long as there is no legal mandate for cancer prevention and treatment (register) and no other forced screening participation which limits or exceeds the objective information the voluntary participation should be guaranteed.

Important
Completely
Wilbacher I Result Card LEG1 In: Wilbacher I Legal aspects In: Jefferson T, Cerbo M, Vicari N [eds.]. Fecal Immunochemical Test (FIT ) versus guaiac-based fecal occult blood test (FOBT) for colorectal cancer screening [Core HTA], Agenas - Agenzia nazionale per i servizi sanitari regionali; 2014. [cited 7 February 2023]. Available from: http://corehta.info/ViewCover.aspx?id=206

References