2.1 Privacy
– Jonah Bossewitch and Aram Sinnreich192
The right to privacy is longstanding in international human rights law and aims to protect a citizen from unlawful interference with their private life and correspondence.193 Yet, the contemporary communication ecosystem allows vast amounts of data to feed into technologies for use in surveillance, advertising, healthcare decision-making, and many other sensitive contexts.194 Complex forms of government and private sector monitoring exist that draw on sophisticated technologies to trace individuals and detect their behaviour, networks, consumption and so on. The role of data concerning mental health in these processes is poorly understood.
Clearly, privacy over individuals’ and communities’ data concerning distress and mental health is vital. Failure to attend to privacy issues could have multiple negative consequences: it may shape individuals’ willingness to disclose their distress (for example, privacy concerns may undermine a person’s confidence in seeking support); data may be used to discriminate against individuals, families or groups, which could be used in the context of insurance, employment, housing, credit ratings and so on; data may be sold or monetised without an individual’s consent, including being used to inform manipulative advertising practices; and may enable identity theft and health system fraud. People may avoid disclosing or accessing a service for fear that their medical biography or data on their mental and personal life may be used to their disadvantage in the future—which crucially undermines trust, which is so essential to therapeutic engagement and the seeking of support.
Alternatively, many people will simply be unaware of the risks. Indeed, most consumers have low awareness about the implications of data sharing practices within the larger communication eco-system.195
CASE STUDY: Privacy and ‘Mental Health Apps’
In 2015, the National Health Service of England closed its App Library after a study found that 20 percent of the apps lacked a privacy policy and one even transmitted personally identifiable data that its policy claimed would be anonymous.196 The authors concluded that:
- 89% (n =70/79) of apps transmitted information to online services
- No app encrypted personal information stored locally
- 66% (23/35) of apps sending identifying information over the Internet did not use
encryption and 20% (7/35) did not have a privacy policy
Two studies undertaken in 2019 found that only just under half of the popular mental health apps surveyed had a privacy policy that informed users about how and when personal information would be collected or shared with third parties.197
The proliferation of direct-to-consumer apps and therapy platforms highlights the expansion of digital mental health initiatives in marketised form. Nicole Martinez-Martin has written that ‘the consumer domain presents particularly vexing issues for trust, because the frameworks for accountability and oversight, as well as the mechanisms for data protection and assuring safety and effectiveness, are still evolving’.198
- 192 Jonah Bossewitch and Aram Sinnreich, ‘The End of Forgetting: Strategic Agency beyond the Panopticon’ (2013) 15(2) New Media & Society 224.
- 193 International Covenant on Civil and Political Rights, Article 17.
- 194 Fjeld et al (n 77) p.21.
- 195 A Razaghpanah et al. ‘Apps, trackers, privacy and regulators. A global study of the mobile tracking ecosystem’. Paper presented at the Network and distributed systems security (NDSS) symposium. 18–21 February 2018.
- 196 Kit Huckvale et al, ‘Unaddressed Privacy Risks in Accredited Health and Wellness Apps: A Cross-Sectional Systematic Assessment’ (2015) 13(1) BMC Medicine 214.
- 197 Kristen O’Loughlin et al, ‘Reviewing the Data Security and Privacy Policies of Mobile Apps for Depression’ (2019) 15 Internet Interventions 110; Lisa Parker et al, ‘How Private Is Your Mental Health App Data? An Empirical Study of Mental Health App Privacy Policies and Practices’ (2019) 64 International Journal of Law and Psychiatry 198