Health, Data, Ethics: A European Journey (W5)

The Big Ethics of Big Data.

For the last couple of years big data and the use of it has been on the international public health agenda. Ever since it has challenged policy makers, IT experts, health care providers, the industry, patients – so practically everyone – to make “bold political choices”. These challenges are multifold. What remains when all technological, regulatory and organizational issues are solved, however, are fundamental ethical questions. The big ethics of big data.

Having lots of fun while discussing “Health, Data, and Ethics”: Cornelia Kutterer, Magda Rosenmöller, Tamsin Rose, Franz Leisch

One of the concerns data and health raises is the issue of privacy. An example was mentioned during the workshop “Health, Data, Ethics: A European Journey – More Trust, More Data, Better Health”. Personal DNA services like 23andME provide great opportunities for individuals to explore their DNA, revealing the most private data. Taking a look at the company’s website, however, what we find is this: “Find out what your DNA says about you and your family”. So what happens if data of one person is being used to reveal details about another? A person, who did not give informed consent on doing so? There is of course a benefit. DNA data may help to solve serious crimes. In case of tracing down a murderer for example, the general population would probably agree to disrespect the principle of consent for a moment and take a closer look at the benefits in solving a crime instead. But the underlying questions need to be addressed: do we value the principle of consent differently in different contexts? And is this just?

When talking about big data in health care we also need to talk about trust. Trust in responsible governance. If, for example, policy makers make citizens believe that their electronic health records are in save hands and the included health data may only be used for treatment, then of course patients are willing to cooperate and provide their data. But what happens if all of a sudden politicians announce to make exactly these data sets available for research? (No, I’m not referring to Austria. Or maybe I am?) Anyway, reliable and careful communication is key to allow trust in the system.

In reality, the discussion about data and ethics is often far away from the patients while claiming to be patient-centered. What’s in for the patients if they “donate” their data? Data, after all, has become kind of a currency and is framed by many experts as the “new oil” of the century. But if patients pay, they may also expect something in return, preferably of course a personal health benefit. This benefit, however, is not immediately visible to them. There is hence a need for more transparency, awareness, and understanding, and probably something like “big data literacy”.

However, let’s change sides for a moment and conclude with this: “It’s unethical if we don’t use the potential of big data.” This statement raised during the workshop perfectly highlights that despite the general concerns, we also must not forget about the benefits the use of data may bring about. Improved patient pathways, better diagnosis and treatment outcomes may – in the end – lead to better health for all.

Ethics and Big Data. Still – so many unanswered questions. However, these questions need to be addressed in order to provide a sustainable framework enabling a culture of trust and finally setting the ground for innovation in health care.


This Blog was written by the Young Gasteiner Johanna Kostenzer 


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