ETENE has discussed the ethical issues concerning experimental care and treatments. This position statement and its background report handle these issues based on ETENE´s discussion.
Experimental care is care that is not a part of current care practice and scientific evidence is faint. It is used in situations where other methods have been shown to be ineffective or otherwise impractical. Many treatment practices have started as experimental care, for example when experimental medicine has been tested in another disease or to a patient that has not fulfilled the inclusion criteria of the study. There is a risk that experimental care has no effect or it has unexpected side effects. In that sense experimental care and treatments resemble research.
ETENE proposes that patients are requested to give an informed, either written or documented consent, to evaluate how patients have understood the nature of experimentation of the care. In addition ETENE proposes a notification procedure to be used in Finland in experimental care. The authority receiving notifications have thus a better possibility to monitor the effects of experimental treatments, ask the care provider additional information or even suggest research to be done to measure the effects and safety of treatments.
ETENE´s position statement
Background report (in Finnish)
