Jordan and Palestine: Digital maternal, newborn and child healthcare initiatives
The reproductive and maternal care sectors have also seen the use of data-intensive systems. Examples of the digitalisation of services in the reproductive and maternal care sectors range from facilitating scheduling through SMS to remote digital access to care and counselling using telemedecine, including the use by health workers of a mobile phone to monitor health data and lifestyle of the individual pregnant person over the cycle of their pregnancy, or a child over his/her cycle of immunisation; and the use of mobile applications, sensors, wearable devices, and more. Initial findings of research being undertaken in Jordan and Palestine indicate that various digital maternal, newborn and child healthcare (MNCHC) initiatives are being deployed, and yet there is little evidence of if and how those data processing activities are regulated. Where there are existing policies and regulations on data protection and privacy it is unclear how these inform the design and implementation of digital MNCHC initiatives as these often fail to integrate data governance, security and human rights standards and principles.
UK: mission creep of health data for law enforcement uses
One of the components of the UK’s migration “hostile environment” policy has included data-sharing between health authorities and law enforcement teams. This has taken the form of using patient data collected for health purposes to trace undocumented migrants, and a broader system of entitlement checks and charging health services called “Status Checking” which was part of formal agreements between NHS Digital and the Home Office, the entity responsible for immigration enforcement. The reason why such a policy and such practices are detrimental is that they create distrust with health providers and may deter people to seek health care when they need it. In the UK, the hostile environment and data-sharing arrangements effectively build a new border in hospitals and healthcare providers, which poses a real threat to the health and wellbeing of people with uncertain immigration status. This has meant that in a situation like a global pandemic, those with current or prior uncertain immigration status have deterred from coming forward to seek primary care or to get vaccinated. This directly undermines public health efforts.
Singapore: breach of HIV data
In January 2019, it was discovered that the HIV-positive status of 14,200 people in Singapore, as well as their identification numbers and contact details, had been leaked online following a breach of the HIV registry managed by the Ministry of Health. But it would appear that the breach occurred well before this date. According to a statement by the Ministry of Health, records leaked include the details of 5,400 Singaporeans diagnosed as HIV-positive before January 2013, and 8,800 foreigners diagnosed before December 2011. Patient names, identification numbers, phone numbers, addresses, HIV test results and medical information were included in the information leaked by a former Singaporean resident. This had an intense impact on the LGBTIQ+ community, given than up until 2015 there was a total ban on HIV-infected people entering Singapore and on the right to work of foreigners with HIV status, with only a few exceptions.
What is the impact on people and communities
Despite abundant evidence of the risks and harms associated with digital solutions – not just from the health sector but others too -, thorough human rights impact assessments are not regularly undertaken to identify those who will be disadvantaged and to understand in what ways they will be negatively impacted, even as the health sector becomes increasingly reliant and is founded on digital solutions.
When such assessments are done, either they are not comprehensive enough to encapsulate human rights impacts beyond data protection, or they are not meaningful as the findings are not used to inform whether to proceed with the deployment of a digital solution in the first instance, and if it can go ahead how the impact assessment should inform and shape the design, implementation and maintenance.
Kenya: biometric health surveillance of key populations
Driven by a need for better data about persons living with HIV and key populations in Kenya, the National AIDS and STI Control Program (NASCOP) committed in 2015-207 to undertake a Integrated HIV Bio-Behavioral Surveillance study (“IBBS”) to be financed by the Global Fund. The IBBS study would gather information about HIV incidence and prevalence, risk behaviors, intervention exposure, and more information useful to planning and evaluating the progress of HIV programs. The study would also include use of biometrics for registration of persons living with HIV and key populations who were part of the study. The plans for this study were approved by national health authorities but were not subject to broader consultation with the communities to be studied and relevant advocates. Failure to do so meant the design of the IBBS failed to carefully consider concerns about the invasive nature of biometric data processing, especially for individuals and groups who may be subjected to criminal prosecution for their real or perceived health status and/or sexual orientation/gender identity. The risks of exposure, (re-)identification, targeting and persecution were real and yet unaddressed in the ethical review when deciding to integrate biometrics within this study. Thanks to the quick response from national groups of key populations and their advocates along with support from the global health community, the Kenyan health authorities committed to undertake further consultations, and NASCOP finally agreed to remove the use of biometrics from the IBBS study protocol. This example illustrates the importance of undertaking a thorough human rights assessment of the impact of deploying a technology and in particular the importance of involving rights-holders, i.e. communities to be affected, in such processes to understand and take into account their perspectives and to integrate them into the design of such initiatives.