2.1.6 Informed Consent

Rights of autonomy and decision-making have been a crucial concern in traditions of service user and survivor advocacy, activism, research, and so on. Informed consent, which is a key component of upholding the right to privacy but also has far broader importance, is key to rights to autonomy and decision-making, as reflected in human rights instruments, such as the Convention on the Rights of Persons with Disabilities (see articles 3 (general principles) and 12 (equal recognition before the law)). Like other human rights instruments, as UN

Special Rapporteur for the rights of persons with disabilities Gerard Quinn points out, the ‘Convention requires that consent should be informed, real, transparent, effective and never assumed’—and this is certainly the case in algorithmic and data driven developments.²⁴⁶ According to Quinn, autonomy is implicated, ‘where machine learning uses profiling and other decisions affecting persons with disabilities without their knowledge.²⁴⁷

Informed consent is particularly important with digital forms of diagnosis or proxy-diagnosis. The consequences of being diagnosed and pathologised in the mental health context, whether accurately or not, are often profound. Indeed, algorithmic and data-driven technological interventions in mental health services or in commercialised products that have a significant impact on individuals should never occur without their free and informed consent. All informed consent processes in the digital context should provide sufficient details of safety and security measures, including information about the person or entity that monitors compliance. (See also, Recommendation 5)

Overall, privacy is probably the most prominent theme in public discussion about the ethical and legal issues on data concerning people’s mental health,²⁴⁸ though this does not mean it is the most important. It could be reasonably asked whether privacy should dominate such discussion in comparison to other concerns, as it has a tendency to reduce the conversation to the level of the individual (rather than, say, social and economic underpinnings of distress, or collective claims to using data as a democratic resource rather than an individually owned artefact). Nevertheless, much work remains in applying principles of privacy to the mental health context in the digital era. This includes consideration of:²⁴⁹

Any major effort to unpack these issues requires the active involvement of those most affected. It is also now unavoidable that new government regulation and robust enforcement is needed to protect privacy in the face of algorithmic and data-driven technologies. As advocacy organisation Access Now note, ‘data protection legislation can anticipate and mitigate many of the human rights risks posed by AI [and other algorithmic technologies]’.²⁵⁰ The Access Now position echoes a growing demand by some advocates for new data laws, enforceable penalties and the resources for affected communities to be proactive in contributing to enforcement.²⁵¹ The need for law reform remains a subject of expanding scholarship that should continue to inform and be informed by developments that particularly impact people with lived experience and psychosocial disability.