Do We Need Data Donations?
Prof. Dr. Christiane Woopen
In the age of Big Data, do we need new "data ethics" in healthcare? What could be the cornerstones of such ethics? The medical ethicists and chairwoman of the European Group on Ethics in Science and New Technologies (EGE), Professor Christiane Woopen, Executive Director of the Cologne Center for Ethics, Rights, Economics, and Social Sciences of Health (CERES), shares her position.
Interview by Philipp Grätzel von Grätz, Chief Editor at E-HEALTH-COM. The interview was originally published in German on http://e-health-com.de/details-news/brauchen-wir-die-datenspende/a9ed2adbeca1ba233b1a9f35a12d5666/ and translated by the Atlantische Initiative e.V.
What demands do you as ethicist have on health care in the age of Big Data?
We should strive for a learning healthcare system in which all collected data is evaluated and returned to the care process. This way, supply deficiencies could be identified and eliminated, while new knowledge could be generated faster and would benefit everyone. For this, we need a data integration that does not only support the much-discussed translational process from basic research into the care system, but also a circular process from the care system back into the care system. Consistent data integration would therefore be an ethically justified demand, which could be posed in the age of Big Data.
What other ethical dimensions does digital medicine have?
The second important factor is self-determination of the patient. The ability to view and control the use of your own data is vital. It is puzzling that even in 2017 patients are still unable to access their health data derived from medical care via smartphone. And if the answer is that the current card has failed to make the move to mobility and that patients can access their data only when a doctor holds his or her own card to the card reader at the same time, then I consider this unacceptable. It is clear, however, that self-determination requires a high level of digital competence. This would be a requirement for schools and vocational trainings for health care professions.
Is there some kind of duty to disclose your own data should this improve healthcare?
I would go so far as to say that there is some sort of solidary claim to provide anonymous data sets for the improvement of health care, especially as one would benefit from the solidary healthcare system as well. Self-determination and data protection must of course be taken into account. It just seems to me that when it comes to data protection, priorities are not yet in order.
What would be the right priorities? Do you deem it problematic that due to Big Date true anonymity is not possible anymore?
A permanent anonymization is hard to guarantee, but it is possible to make an unauthorized de-anonymization very difficult. Instead of data thriftiness, data utilization must be addressed. The abusive use of data must be so severely punished that it becomes unattractive. In addition, you can introduce bans on usage. For example, the Genetic Diagnostics Act prohibits insurers from using even voluntarily disclosed genetic information. Such a law could for example be introduced in order to avoid health insurance rates, which are based on a continuous transmission of lifestyle data.
Prof. Dr. Christiana Woopen heads the Research Ethics Center (Forschungsstelle Ethik) as well as the Cologne Center for Ethics, Rights, Economics, and Social Sciences of Health (CERES) at the University of Cologne. She is chairwoman of the European Group on Ethics in Science and New Technologies (EGE).
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