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Yes, it absolutely is. Informed consent is one of the bedrock principles of (ethical) human subjects research. Part of the process is that subjects have to be
by mattkrause 9y ago
Yes, it absolutely is.
Informed consent is one of the bedrock principles of (ethical) human subjects research. Part of the process is that subjects have to be able to withdraw from the study at any time.
In the US, this is literally the law (45 CFR 46.116), which says that "the subject may discontinue participation at any time without penalty or loss of benefits to which the subject is otherwise entitled." This would likely include the release of protected health information after it is collected, especially when it comes from a small probably-easy-to-deanonymize group.
- Dylan16807 9y agoInformed consent is important. But being able to withdraw from record release is not integral to the very concept of informed consent. It's fine as a requirement for everyday studies. But when you have an absolute expert subject, I think upfront informed consent is workable.