Leaps and strides in digital data acquisition and storage has lead to the phenomenon of electronic mortality, where digital data — from medical records to genomic information — can exist, and be accessed, for a potentially infinite period.
Consequently, there are major ramifications in a variety of different areas. In particular, health research relies of large data sets. All over the world, countries are facilitating the acquisition and researcher-led access to large-scale, population-based digitised healthcare data sets. Their utilisation has led to numerous positive advances in healthcare. For example, over the last twenty years, Iceland has used a large database to advance population genetics and uncover genes involved in various diseases.
Genomic data is that which is derived from the examination of one’s DNA. The information is stored via digital file, and genome-wide studies can uncover associations between genetic variation and medical conditions that cannot be diagnosed from the bedside. “Globally, many studies are being conducted that allow scrutiny of health data from large populations to further an understanding in such areas as disease processes, drug interactions and epidemiology.”
New Zealand’s healthcare data
New Zealand is one such country that could benefit from a large healthcare database. Our medical record system is becoming increasingly digitised, and thus there is an ever-expanding resource of posthumous healthcare data stored digitally, including genomic information. This data may be utilised for research purposes. Developing a consolidated resource could improve healthcare outcomes in our own nation and allow us to parallel global progress in healthcare research trends.
There are many issues surrounding the utilisation of a national resource of posthumous digital healthcare data however. According to a report, published today in the New Zealand Medical Journal, there currently exist no legal barriers to the large-scale acquisition and utilisation of posthumous healthcare data in New Zealand. However, previous legislation may not have been developed with developments in technology or e-mortality in mind. “Current research policies address the use of genetic material of living participants, but few consider what happens to this data following the death of the individual and subsequent information disclosure for further research.”
There are many ethical, cultural and social issues to address in considering the creation of such a database, “including issues surrounding obtaining consent, respecting privacy, management of incidental findings, maintaining anonymity and ensuring community support for such a resource.”
Although the utilisation of posthumous healthcare data would no doubt facilitate widespread health benefits in New Zealand, wide and ongoing consultation is required to examine how such a precious resource can be enabled for the downstream benefit of all New Zealanders.
The study, entitled Posthumous healthcare data, digital e(lectronic)- mortality and New Zealand’s healthcare future, by Katie Hoeksema, Richman Wee, Alastair Macdonald, Parry Guilford, Jesse Wall, Jon Cornwall may be found in today’s issue of the New Zealand Medical Journal.