I am fascinated by the questions surrounding the ethics of data mining a patient’s electronic health record (EHR) after they die.
Consider this: From a healthcare corporation’s point of view, the EHR of a patient, after they die, becomes extremely valuable. Why? Because death is a hard endpoint—a patient’s dataset leading up to their death might contain information to help predict mortality in other people.
If you have enough data from enough dead patients, you may be able to prevent deaths in others. It’s a Utilitarian’s dream.
However, there is no chance that a dead patient will benefit from the data mining of their EHR. It’s also unlikely they gave explicit informed consent their data prior to their death would be mineable indefinitely into the future (or as long as corporations feel it’s needed). I believe data mining a patient’s EHR without their consent and treating them as a means to an end is deontologically unethical. (Whether it is legal is a separate question. I suspect most corporations would contend people don’t own the data in their EHR).
Do corporations have the moral right to data mine and use a dead patient’s electronic health data after they die without explicit consent?
This is one of the most important ethical questions in healthcare today.