Dr. Jon Cornwall, a senior lecturer at the Otago Medical School Center for Early Learning Medicine, has been researching the possible uses of posthumous electronic health data (PHCD) for nearly five years, and his latest research shows that Kiwis are supportive of the use of their data after they die – as long as it helps others.
Dr Cornwall said there are many ways to use this data, including using genomic data to treat and develop personalized medicine.
“This will directly benefit the family in certain circumstances, as well as the wider community.”
He said society had entered an era where recording digital information about us was considered normal.
Yet despite its growing volume, no decision had been made about what would happen to that data after someone died, and there was no guideline as to what society considered acceptable.
Dr. Cornwall’s study aimed to fill this gap by exploring the attitudes and perceptions of New Zealanders towards the use of deceased health data.
The results showed that there was conditional support for a centralized, government-run PHCD repository, allowing controlled and free access for healthcare and research purposes.
He said the public benefit of the data was important and participants prioritized all benefits to the family, then to New Zealanders, then to others.
Commercialization from the use of the data was considered ‘likely’ and ‘acceptable’, and the Maori PHCD was considered preferably Maori-run.
However, participants struggled to define appropriate levels of family access, anonymity, and consent models.
Dr Cornwall was not surprised by the results.
“The Kiwi attitude of helping others has taken hold – we are a good group.”
He said this information will help shape how the PHCD should be used in a socially responsible way.
“Death is an important social construct and deciding how to respectfully treat information from those who have died had not previously been discussed.
“This is particularly important when medical information, which has personal and societal value, is used.”