Oral Presentation Australasian Association of Bioethics & Health Law and New Zealand Bioethics Conference

What should happen to our medical records when we die? (843)

Jon Cornwall 1 , Kathryn McAuley 1
  1. University of Otago, Dunedin, OTAGO, New Zealand

Digital innovation is transforming healthcare, and the digital medical data currently being generated by our population will have increasing utility over time. Despite the seemingly logical and inevitable application of medical data from deceased persons in research and healthcare applications both now and in the future, the issue of how best to manage the growing repository of posthumous medical records is currently unclear. This includes elements of resource governance, issues of law, and infrastructural challenges. Our project explored the views of the local Dunedin (New Zealand) population to the use of posthumous medical records. Using focus groups (10 x 6-person, 1-hour, age-groups from 18-65+ years-old) we explored issues relating to posthumous medical record use, including questions surrounding governance, anonymity, law, and commercialisation. Transcriptions of focus groups were analysed thematically. Findings indicated strong support for the use of posthumous medical records in New Zealand, with beneficence of participants a strong theme. As a resource, 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 utilised. Family rights to data of the deceased were not universal, with limited case-by-case access supported despite almost unanimous support for descendants to benefit from personal, historical medical data. Current challenges including development of an ethically and culturally appropriate governance system, alterations to current law to protect posthumous medical records from destruction or misuse, and implementation of a fit-for-purpose technology infrastructure.