Towards Implementation of Ethical Principles: Privacy and Confidentiality in Medical Data Mining—Indian Scenario

Datasets constitute a fundamental part of any medical research. Medical data sets (ie, medical records) are generally noted to be large, complex, heterogeneous, hierarchical, time related, and of varying quality. Such fragmented and distributed data sets challenge efficient data integration and interpretation. Application of data mining techniques for healthcare related data will be highly rewarding. Lack of domain knowledge within healthcare providers calls for active collaboration between the doctor and data miner. Ethical concerns, especially issues of consent and confidentiality have resulted in the introduction of stringent regulations in doing this form of research in India. However we found that only 16% of the reviewed publications in medical data mining within India reported of having undergone ethical review. This suggests that the ethical considerations while practicing data mining is very much undermined. It is mandatory to obtain ethical and legal clearance from regional as well as Institutional Ethics Review Board (IERB), before using data mining tools in health care research.