In the next 200 years, at least 20 billion people will die. A good proportion of these people are going to have electronic medical records, and that begs the question: what are we going to do with all this posthumous medical data? Despite the seemingly logical and inevitable application of medical data from deceased persons for research and healthcare both now and in the future, the issue of how best to manage posthumous medical records is currently unclear.
Presently, large medical data sets do exist and have their own uses, though largely these are data sets containing ‘anonymous’ data. In the future, if medicine is to deliver on the promise of truly ‘personalized’ medicine, then electronic medical records will potentially have increasing value and relevance for our generations of descendants. This will, however, entail the public having to consider how much privacy and anonymity they are willing to part with in regard to information arising from their medical records. After all, enabling our medical records with the power to influence personalized medicine for our descendants cannot happen without knowing who we, or our descendants, actually are.
Imagine this scenario: In the future, massive posthumous medical health record databases could be available for researchers to use for exploring disease models, family disease patterns (both intra and intergenerational), and guiding development in pharmacogenomics. Any results or discoveries would not only help advances in medicine, but information could be fed back into healthcare systems to guide healthcare decision-making for individuals on a case by case basis. As an example, discoveries linked to a particular gene or condition you may have would be linked to the healthcare records of a descendant, whose healthcare practitioner would become aware of the information once it was fed back into the healthcare system. In that way, your descendants would directly benefit from your data being available for research purposes.
My recent work, funded by the New Zealand Law Foundation, was a year-long study on posthumous healthcare data utility that explored the views of the general population to the use of posthumous medical records. We wanted to explore what people thought about posthumous medical records, their utility, their governance, and what such a system might look like. It involved a large number of focus groups that were broadly representative of a cross-section of the population, with results showing a centrally collated and Government-governed resource of posthumous healthcare data was almost universally supported, with varying caveats around how such a resource should be utilized.
What was fascinating is that, by and large, most people were happy to leave a medical record resource that could be of direct benefit to their descendants, the general New Zealand population, and to humanity. People were comfortable with the fact that users of the information, like pharmaceutical companies, would profit out of data use, with an example of this being the development of a new drug from use of such a data resource. What they did not want was ‘blatant exploitation’, or to feel like they were being taken advantage of, and from this position they also suggested that ‘selling’ the data to companies was not right – it should be a free resource. There were also opinions acquired from Maori participants, the indigenous people of New Zealand, and comments from this groups suggest that their data should be treated somewhat differently from that from European New Zealanders. This highlights how indigenous interests and potential data sovereignty will need consideration as medical data management of this kind is developed.
So what kind of medical management do the public want to see in the future? Is it a future where their descendants are recipients of the most efficient and effective personalized medicine we can provide? An old proverb suggests ‘The best time to plant a tree is now’, and with that in mind, perhaps it is timely for us to consider how we wish to best serve the health of our descendants. We need to examine how our medical record systems will address the utility of posthumous digitized medical records, before these data are lost or sequestered in locations where their use for common good cannot be easily delivered.
Dr Jon Cornwall is a Senior Lecturer at Otago Medical School, the University of Otago, Dunedin, New Zealand. He has research interests in posthumous human assets, including the posthumous utility of bodies, organs, and health information in healthcare and education. He is a member of the Federative International Committee of Ethics in the Medical Humanities, the group that oversees ethical processes surrounding body donation for the International Federation of Association of Anatomists, and serves on the editorial board of several anatomy journals.
Dr. Cornwall’s talk at Harvard Law School on this topic was part of the Digital Health @ Harvard Series, co-sponsored by the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics, and the Berkman Klein Center for Internet and Society at Harvard University