What rules should be in place to guide the donation of patient medical data after that person passes away? One group of ethicists and lawyers may have at least a partial answer to this question. The group, which met late last year at the Oxford Internet Institute, has created a proposed ethical code to tackle this issue which, as it turns out, hasn’t been addressed systematically before.
In theory, leveraging medical information after someone dies could have great benefits, particularly in conducting research that requires data on people’s health over a long time. However, the reality is that there are lots of tricky questions associated with sharing such data.
According to a story in The Verge, the problem hasn’t got much attention before. “Almost no one has thought about what is going to happen to all of the medical records that sit around after people die,” said Jon Cornwall, senior lecturer in the Centre for Early Learning in Medicine at the University of Otago in New Zealand, who spoke to the publication.
The group’s proposal, which was published in January, states that any collection of posthumous health data to be used for the common good rather than commercial purposes, that the data should be stored carefully and that research conducted using the data should be shared with the public. The group also suggests giving patients detailed information on how the data might be used and argues that people should have the opportunity to restrict the use of such data as they see fit.
It’s worth noting that in some countries existing laws and regulations let researchers use electronic health information they already possess from people who have died. For example, the UK’s National Health Service lets scientists request permission to access and use anonymized health records in its possession, but has a policy allowing people to opt out of giving researchers such access.
Of course, in the US we have HIPAA laws, which state that personal health data remains private for 50 years after someone dies unless authorized persons leased the data. On the other hand, HIPAA includes a truck-sized loophole allowing scientists to request and hold such data for research purposes as long as it’s anonymized, the story says.
In addition to implementing an ethics-driven process for such transactions, the Oxford group members say it will be important to standardize the process of post-mortem health data donation. For example, one member would like to see providers develop a consent form for such data sharing similar to the one used for organ donation.
In addition, providers should consider the feelings of those who remain alive, the group points out. After all, medical records may hold data on the medical histories of family members who didn’t consent to give away that information.