Our previous article on “Dr. Google” showed a promising future where search engines and chatbots could be our first contact point for primary medical care. Many concerns are left to be solved before that day, nonetheless. That is why we had a chat with Dr. Judit Sandor (Lawyer and Professor of Law and Political Sciences at Central European University) about bioethical and privacy issues related to Google’s medical research projects and the bigger-than-ever collection of human saliva samples during the Covid-19 pandemic. As the current Director of the CEU Center for Ethics and Law in Biomedicine, Dr. Judit Sandor has brought a novel perspective and many interesting insights to our discussions.
Today, people can enter symptoms on Google and see related medical information, sometimes even diagnosis and medical advice. The case of “Dr. Google” shows us that that artificial intelligence can fill the gaps where access to healthcare is not guaranteed for everyone, such as in the climax of a pandemic. What do you think this possibility and what concerns you about it?
While it is very useful to check certain symptoms by searching on Google, data protection and privacy is a complicated issue here. When the Covid-19pandemic was in its worst phase, many people could not visit doctors, a selective procedures were not available. Various forms of e-health services are available on the internet. There, users are required to fill in questionnaires include collection of many data, including age, sex, and medical history, and that process leaves traces behind. Paid services request even more health data and almost always ask for the email address.
True, digitalization saved many jobs during the pandemic, but it also contributed to increasing inequalities. State surveillance has also been accelerated. The real danger in my view is when surveillance replaces adequate healthcare. The temptation is significant. It is always easier to monitor something than to solve it. Healthcare requires significant sources and infrastructure while the developed digital industry can be easily contracted for monitoring, and furthermore, the pandemic could serve as an excuse for some governments to extend biopolitical control surveillance beyond the needs of the pandemic for gaining more political power over the population. Recently, the 2021 UNESCO’s Recommendation on the Ethics of Artificial Intelligence highlighted that artificial intelligence cannot be a law-free zone, “especially because it is already in our lives, directing our choices. There are some legislative vacuums around this industry that needs to be filled fast.”
Google Health Studies is a major Google project calling internet users all over the world to participate in health research. With the current number of participants being in the hundreds of thousands and increasing every minute, this pool of personal health information will be huge in a short time ,if not already. What concerns you the most about these community-based search projects?
Self-monitoring of health parameters is very common now. When I asked my students some years ago about who is using any application to monitor their diet, physical activity, blood pressure, or hormonal cycles, almost everyone raised their hand.
Google Health Studies promises that only aggregated data is used and not individual data. The data collected from different devices is encrypted and summary data shall be used for research purposes. During the time of Covid pandemic, monitoring the spread of the disease has been essential, so contact tracing has become necessary and more and more people are willing to contribute their data to public benefit purposes. Therefore, I think service providers and data processors must not abuse this unique moment of trust.
Artificial intelligence is capable of analyzing and cross-linking data in ways that we have not seen before. Individual persons are not yet aware that if artificial intelligence has access to different sets of data, then their combination may point to an individual. A similar problem was found when massive quantities of genetic data were collected for biobanks. There, even if the samples and data had been anonymized, it is not impossible to identify the individual by matching or cross-linking different kinds of data.
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We have never seen as many “gurgle” tests delivered to laboratories as during the time of this Covid pandemic. Do you think the collection of these saliva samples can be considered an actual biobank? Whether the government or private laboratories are getting hold of these samples, what are the risks proposed by this huge collection of human saliva?
During the pandemic the fear that our privacy might be infringed is indeed justified. In cases when saliva or other samples are taken for the purposes of detecting an infection by the SARS-CoV-2 coronavirus, the specimen and the data thus collected cannot be used for other purposes, including the creation of a biobank. Biobanks cannot be established without a detailed authorization process, as the main purpose of a biobank is to create a specific infrastructure to collect and use samples for multiple research projects and only based on prior consent. In biobanks samples are coded and not used for individual research or therapy. Nevertheless, in the rush to fight the Covid-19 pandemic a huge amount of health data has been generated and used in ways that are different than before. For instance, the Hungarian Government launched an official information site where the general public can see the number of people who have been infected, tested, cured, and died as a result of Covid. In the mortality statistics one can see the age, the sex, and the underlying disease of the Covid-19 victim, which, in some cases, make it possible to guess or even identify the victim and their medical condition before contracting the coronavirus.
In a public health crisis, measures of immunization, vaccination, quarantine, testing, social distancing require collecting and processing lots of information and data. International traffic is even more complicated as other private and public agents, such as air companies, hotels, immigration officers, are also involved and these actors may also see and process the individual data of persons, including their name, passport number, and vaccination certificate. As a general rule, processors of personal data should access such data only when a data processing agreement is in place. In accordance with Article 28 of the GDPR, member states in the EU should, when applicable, clearly define in an agreement the responsibilities between the public authority, which acts as data controller, and the data processor acting on behalf of the controller. After all, while the law has provided a lot of protection measures for personal data, the outcome depends on the observance of data controllers and data processors.
Your research pointed out the differences between the protection of persons (in the legal sense) and protection of humans (in the biological sense) as they have ‘human origin’. Could you explain to us more about these concepts and their implications with regards to privacy rights and human rights?
I am convinced that the framework of human rights provides an excellent starting point for discussing new and challenging biotechnological interventions. But what I wanted to add to this is that we cannot apply human rights principles to persons and to human tissues in the same way without analyzing the differences between persons and human tissues first. Some principles and norms apply to both, but others do not. Human dignity is interpreted in the context of persons but, for example, contamination or mixing of samples pose threats to the use of human specimens.
Human rights look a bit different when we observe them on a molecular level. Biological specimens of human origins were regarded as either biological waste or research material almost until the end of the 20th century. The turning point was the Human Genome Project when the relevance of human genetics and the multiple uses of human tissues became evident even for the general public. As a consequence, what has been regarded as a routine medical practice in 1951, at the time when Henrietta Lacks was operated and her cancerous tissues were removed and later used for research purposes and developing the world famous HeLA cell lines, now would be illegal without the patient’s consent.
We adopted several human rights norms to the use of human tissues because the examination of these may reveal not only the causes of a disease, but also many other important genetic information on the individual, thus also his or her identity. Still, in each case, we should analyze to what extent we may use human rights norms in the contexts of human cells, gametes, tissues, and DNA. Without this legal work of interpretation, we may unintentionally upgrade the protection of gametes/cells/tissues to the level of protection of persons, and I suppose I do not need to tell what the consequences are when human beings compete with human tissues for the recognition of their human rights.