Epidemiologists question the ethics of using social media and big data in public health
Great innovations are often adopted with gusto, with all of us clambering away to get the latest smartphone or the biggest, flattest television, or the wearable that promises to monitor our entire metabolic process with no manual input from us.
We adopt first, and question later.
Recent studies published in the journal, Computational Biology, pose questions about the ethical concerns of digital disease detection. Digital disease detection, or using big data or social media data analytics to monitor the health of populations, has become popular of late.
Epidemiologists and marketers alike are harnessing the digital traces we leave behind when we like things on Facebook, search for symptoms on Google, or sync the information collected on our wearable devices. In addition to personalized marketing, open access to our digital traces has given rise to a new era of public health surveillance systems—for better or worse.
Digital disease detection, according to Dr. Effy Vayena from the University of Zurich, allows epidemiologists to “study individuals and groups in the rich contexts in which their lives unfold, and to study the person-to-person spread of disease and behaviors at the level at which it actually occurs.”
Not too long ago, public messages about diseases went through many layers of approval. Digital surveillance is faster: by appropriately harnessing web-based data, public health officials can provide more timely information to warn of communicable disease outbreaks.
Digital surveillance is also used to monitor health behaviors that indicate susceptibility to non-communicable diseases, such as depression, obesity, and alcoholism. As more information is shared online about individual lifestyles, epidemiologists can get rich, contextual, and hyper-local insight into behaviors that are closely tied with health in the 21st century.
Not all digital traces are meant to be public. In their paper on digital epidemiology, Vaneya and colleagues point out the ethical and legal challenges of digital disease detection. Issues of ethics and privacy are nothing new in public health. However, current privacy issues and the ethics involved in traditional disease detection are more pronounced now with social media and big data.
To address these ethical objections the authors focus on the following three categories:
- Privacy and consent - the requirements need to be adapted for a public health context (as opposed to a commercial context).
- Methodological robustness - methodology is evolving and requires constant adaptation to avoid false identification of outbreaks that could cause harm.
- Legitimacy - digital disease detection needs codes of best practice to meet ethical requirements as well as clear communication to the public to prevent hype.
The researchers say: "Big data can play a major role in public health and its potential has been demonstrated. However, we are only at the beginning and there is no way to tap into this resource without an ethical and trustworthy framework. The road to trust requires a lot of effort and ethical diligence."
Just Because We Can Doesn’t Mean We Should
nuviun discussed these issues with Dr. Nancy DiIulio, Senior Associate Dean of Undergraduate Studies and biology instructor at Case Western Reserve University in Cleveland, Ohio. With a Ph.D. in biological chemistry and a nose to the proverbial ground when it comes to both medical research and student use of information and communication technology (ICT), Dr. DiIulio offers a unique perspective when it comes to methodology and hype.
“All big data can only establish correlation, never cause,” Dr. DiIulio told nuviun.
When asked about the use of social media data for disease detection, she warned that the “imprecise use of language by the average person, combined with our tendency toward hyperbole, makes accuracy difficult.”
“We’ve always had this issue of privacy in medical research – and patients always had the expectation that their health information was private,” Dr. DiIulio continues. “Today’s youth, however, have no expectations of privacy.”
It seems then, that digital disease detection should not exist in a vacuum, without other empirical research methods. As we adopt new methods of detecting and communicating health issues, questions of privacy, permission, and context should remain top-of-mind.
The nuviun industry network is intended to contribute to discussion and stimulate debate on important issues in global digital health. The views are solely those of the author.