Public trust and research on personal health data

To protect patients against overzealous researchers, the Declaration of Helsinki was adopted by the 18th World Medical Assembly in 1964. It is a tool for preventing mistakes such as the Tuskegee Study

Currently, there is an increasing disregard for the Helsinki declaration. In my opinion, it is partly due to the blurred line between marketing and scientific research. Companies such as Facebook and OK Cupid admit to overstepping ethical, but not legal, boundaries. I believe it is safe to assume that other social companies apply similar methods for marketing and research. As Big Data simplifies data gathering, healthcare facilities are also employing some dubious research methods.

These actions erode public trust, patient rights and safety. Eventually, patients will resist supplying data for research purposes. This is unfortunate, as much can be learned from our current and future healthcare databanks. Research on public data and EHRs need to be grounded on informed consent, be anonymized, and securely stored. Underprivileged individuals should not be tempted into donating their data or tissue to research. A public discussion amongst researchers, doctors, computer engineers, government officials, bioethicists, and patient advocacy groups, should preemt any data gathering endeavors in order to prevent tainting the reputation of health data research.

The Nordic countries are well suited for pioneering health data research, because of their longstanding democratic governments, inclination towards open debate, and homogenous, nationalized healthcare systems. The NOKLUS study in Norway shows that an ethical approach is feasible. The challenge is to apply the same principles on a larger scale.