Table of definitions

Right to know

The exception on the right to know or not to know should exist

Right to know: in very rare cases there could be information, which may harm the patient/research subject (e.g. information about grave prognosis - inevitable death). So, in the interest of research subject such information (or part of it) could be withheld. However, there should be clear procedures established for such cases; e.g. the risk of damage has to be proved by clinician/researcher and supported by another professional or professionals (psychiatrist, psychologist). However, such exceptions have to be very rare and very well documented.

Right not to know: In certain circumstance the person may ask to provide no information to him/her about the results of intervention. However, if such information is very important for his/her health and life, this information has to be conveyed; e.g. if this information concerns allergy, than it is critical for patient to know about this in order to avoid severe allergic reaction and even anaphylaxis as a result of ingesting/contacting allergenic agent; or if the information concerns the disease which is dangerous for his/her profession (working environment may be dangerous for the worker due to his/her existing disease). So, to conclude, when the information gives a possibility to prevent serious harm for the research subject, this information should be provided to him/her even in cases when he/she previously has expressed wish not to know.

Finally, restrictions on the right not to know could be based not only on the interest of the research subject but also on the interests of the third parties. There could be two types of examples:

  • a) The person may have the disease which is dangerous for third parties; let say, if the person is driver and he/she has disease which may cause loss of consciousness, even for a short period; or if patient has severe infectious disease with high contagiousness;
  • b) The information obtained as a result of intervention may be very important for third parties to prevent harm or treat disease (however, these last examples are comparatively weak in comparison with that given in "a").

Explanations for the above mentioned restrictions are also given in: Council of Europe. Explanatory Report of the Convention on Human Rights and Biomedicine - paragraphs 68, 69, and 70.