Bio-libraries and DNA storage: assessment of patient perception of information
de Montgolfier, Sandrine
Medicine and Law: World Association for Medical Law 2001; 20(2): 193-204
BACKGROUND: Since the creation of places where DNA is stored, a number of questions appear about protecting the individual, confidentiality and the validity of the proposed consent to storage. This study, originating in France, analyzes and assesses the impact of the information given by the clinician to the patient regarding having his DNA stored. How does the patient receive the information? What is left of it? Is he informed enough to sign a "well-informed" consent? METHODS: A questionnaire issued to 170 patients in the same department was used to assess: (1) their knowledge of genetics, (2) their knowledge of DNA storage, (3) their perception of the consent. FINDINGS: A third of the patients answered, 20% of whom understood the objectives of a genetic test. None of the patients contacted was aware that he had samples stored in a DNA bank, that genetic analyses had been undertaken or remembered that he had signed a consent (which indeed exists). INTERPRETATION: The idea of a "well-informed" consent belongs to the criteria defining the validity of a cure and research agreement. Yet, its validity is doubted as soon as the information it implies is not understandable by the patients. Indeed, can the individual be considered autonomous, in the philosophical sense, in a well-informed decision making if the information given to the patient has not been well understood?
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