Two ethical dilemmas lie at the heart of the data regulations for digital healthcare. Firstly, how do you make health data available for essential research and development into new treatments, while protecting individual patients’ sensitive personal information? Secondly, in what circumstances should a physician proceed to treat a patient who will not give consent to access their medical records, in order to save their life? Both issues – of anonymity and consent – loom large for innovators in immersive healthcare.
Advances in mapping the human genome have made it possible for physicians to obtain the entire genome sequence for an individual patient. While this enables better health outcomes, an individual’s entire genome sequence is unique and cannot be anonymised, adding to confidentiality issues in the use of health data.
Moreover, recent studies have shown that health data such as medical records and DNA sequences, which has been stripped of names and identifying information in an attempt to make it anonymous, can be traced back to identified individuals if it is combined with other publicly available information[i].