Are patient rights to information and self-determination in diagnostic genetic testing upheld? A comparison of patients' and providers' perceptions

Abstract

This study assessed how the patient's right to receive information and the right to self-determination were followed during diagnostic testing, according to the perceptions of patients and parents of tested children (group 1, n=106) and healthcare personnel (group 2, n=162). Data were collected in three Finnish university hospitals using a questionnaire. Results revealed one between group difference: patients/parents agreed more strongly than did personnel that self-determination was followed before testing. Within groups included: patients/parents had stronger agreement that self-determination was followed before testing than after testing; personnel had stronger agreement about information received after testing than before testing, and they had weaker agreement about how well self-determination was followed before testing than after testing. Received information was experienced as similar both before and after testing and by patients/parents and by personnel. Providing adequate time to consider whether or not to be tested and giving more support to patients after testing would promote the rights of patients. Furthermore, assessment of personnel characteristics is needed to determine, for example, the kinds of value conflicts that exist between personnel's own values and patients' values. © 2008 National Society of Genetic Counselors, Inc.