Similar to all kinds of digital tools and technology, big data management is a means not an end itself. The availability of big data, coupled with artificial intelligence tools can save the life of a person experiencing depression who is about to commit suicide; on the other hand, if data rests with users who fail to appreciate the importance of ethnical principles and standards required when using and sharing personal information, data subjects will then be kept in the dark once they realize their personal information has been disclosed to third parties, leading to anxiety, depression, and even post-traumatic stress disorder.
The World Economic Forum (WEF) reminds us in their white paper on “Empowering 8 Billion Minds Enabling Better Mental Health for All via the Ethnical Adoption of Technologies” published in July 2019 that ethnical use of new technology in particular in mental healthcare is essential. Trust takes time to build, but it can be lost quickly, and the effect of losing trust may be worse than never having had it in the first place. Given that mental health practitioners and psychiatrists are arguably some of the most trusted members of society, WEF emphasizes this sector of service providers should pay special attention to privacy issues when handling individuals’ medical information.
A recent study conducted by a privacy rights advocacy group, Privacy International (PI), has revealed that popular mental health websites in EU are sharing users’ sensitive personal data with advertisers. It is truly disturbing as businesses blatantly ignore strict rules governing processing health data in force, i.e. the General Data Protection Regulation (GDPR). Under GDPR, health data is classified as special category personal data which means that if consent is being use as the legal basis to gather health data, ‘explicit’ consent from data subjects are required, i.e. consent must be expressly confirmed in words, rather than by any other positive action. PI noted that even for many depression test websites which had attempted to ask for consent of visitors, they had made the process look confusing: they do not offer straightforward option to reject consent where in one case the consent box disappears the moment the user takes any action on the website, for example scrolling, and where this is interpreted as consenting to targeted advertising and data sharing. Some websites do not even show a cookie banner even they are placing third party cookies.
Government involvement in data management can also trigger psychiatric abnormality, in particular when the collection, use and disclosure policy lacks transparency. Thus, it is not surprising that the launch of the Multi-functional Smart Lampposts pilot scheme by HKSAR government earlier this year has aroused serious public concern. The Administration claims that cameras installed on the lampposts are not equipped with facial recognition function, and images produced (resolution of 4K pixels) will be delivered to the Transport Department and Environmental Protection Department for processing so as that facial recognition becomes impossible. It remains in question which authority will monitor and ensure the said processing is duly completed. Imagine that from now on, wherever you go, your every move will be captured and images of which may be transmitted to any party for any use which is unbeknown to you. Agoraphobia is something foreseeable.
Technology and data lake have potential to support individuals to get through crisis. WEF is aware of the power of big data in unlocking effective prediction, diagnoses and treatment throughout the provision of mental health services. There are now mental healthcare apps which can keep track of patients’ brain activities and other changes in mental health. Unlike the traditional way which one has to wait for months for expert appointments, with the apps, if the patient does not respond to initial, self-care treatment prescribed, he or she can be quickly referred to a medical professional who can offer diagnosis, medicine and counseling right away via texts, videos or phone calls.
There is a fine line between good and evil. The existence of legislations and regulations is not an ultimate cure for privacy threat. Embrace responsible practice and ethnical data use, and trust and loyalty will follow.
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This article is for information purposes only. Its contents do not constitute legal advice and readers should not regard this article as a substitute for detailed advice in individual instances.