Informed consent and accountability in the Indian healthcare sector- Towards a data portability based informed consent model

Abstract

Consensus among scholars have been to regulate informed consent and accountability in data-based sectors by focusing within the organisation, albeit through different techniques like dynamic consents, data trusts, adaptable consents, data auditors, improved anonymisations. However, I argue that in certain sectors like healthcare, these setups will be a mere display given the inherent unaccountability, dependency and increasingly narrow-cum-niche specialised markets forming in this sector. This I show by taking the particular example of the effect of ‘withdrawal right’ in health privacy policies that forms an essential part of informed consent, but has been much ignored. I argue that rather than focusing on accountability through regulation and blame, we should start focusing on accountability through market and choice, since the former can be countered through several justifications particular to HS, like commercialisation through health research, even where PPs are made truly DPDP compliant. In doing so, I further the right of data portability not as merely increasing ownership over data or the promotion of interoperable models, but as a significant ‘market negotiator’ for purposeful processing of health data that fails to be withdrawn. Keywords: Healthcare, Accountability, Informed consent, Withdrawal, Privacy policy, Data portability