Curriculum · Professionalism and Medical Ethics
Patient confidentiality
What it is
Patient data have to be maintained strictly confidential, and genetic data call for even more vigilance than the rest. The duty has a limit, and the limit is said to the patient at the start of the psychiatry station: everything you say is confidential unless there is a risk of harm. In clinical genetics, privacy and confidentiality head the list of ethical issues of specific importance, and beside them stand discrimination, screening and presymptomatic testing, testing of minors, and prenatal diagnosis. The information in a patient's record belongs to that patient, and it may not be accessed without permission from the patient. Members of the patient's circle of care have implicit consent; colleagues working in the same institution, unless they are part of the circle of care, do not.
Causes and risk
What makes genetic data need that extra vigilance is named: the effects of a genetic diagnosis on the patient's documents for insurance and on other legal issues, the sharing of genetic information among couples, and information with direct implication for family. Discrimination is listed with them. So consent carries the weight. Patients should be informed in general terms of what happens to their sample and to the information from it, including quality control of other tests and that results may be incorporated into national data sets. Timing, the purpose of the test, whether the patient came on their own initiative or under coercion, and their understanding of the condition and its inheritance all belong in that conversation, together with additional or secondary findings and the patient's own understanding, language, cultural beliefs, religion and morals.