Delivering Informed Consent: Lessons from Mae La
Devina Srivastava and Cornelius Saunders (ID2020).
OCHA defines informed consent as “an ethical (and in some cases, legal) mechanism ensuring that individuals voluntarily provide information with full knowledge of relevant risks.” Individuals must have a choice regarding their digital identities and must have control over these identities. This includes knowing how individual data is collected, used and shared, prior to their participation in the program. Once enrolled in the digital ID program, the aim is for individuals to be able to assert their identities across institutional and national borders, and across time. While leveraging technology can catalyze program scale and speed, strategically stepping back to conduct activities on the ground to achieve informed consent works towards ensuring that individuals can access choice and have ownership over their own decisions.
“Technology can present an exciting opportunity to jump right in with a solution — maximizing scale and reach, but the larger issues we hope these impressive technologies will address are not technical ones — they are far more complex social issues. Therefore, a measured approach to design and delivery is critical; keeping the human aspects of this change — and our commitment to “do no harm” — as key drivers of all our decisions. We push ourselves continually to question our assumptions and to understand the change we are trying to make through the eyes and lives of the refugees”, shares Darren Hertz, Country Director, International Rescue Committee, Thailand.
Informed consent is not simply a legal hurdle in implementing a digital identity solution; it is a core component of empowering individuals to improve their own lives through these programs. There needs to be a movement towards recognizing true informed consent as a requirement for program success. ID2020 strives towards ensuring informed consent in all its programs.
This article discusses learnings from one of the ID2020 pilot programs in Thailand. ID2020, the International Rescue Committee (IRC), and iRespond launched a pilot of a program initially focused on facilitating a more rapid and targeted treatment of chronic diseases for patients in the camp. Subsequently, the program will be expanded to include all camp residents and integrated with existing education and livelihood services. In the eighteen-month pilot period, the project teams will enroll beneficiaries, deliver services, and monitor and evaluate program effectiveness. The program ensures that detailed information is provided to all individuals before they enroll in the program and that their consent is received prior to enrollment.
The Mae La program establishes a two-pronged approach to ensure informed consent:
- Due diligence is conducted to ensure that individuals better understand the risks and benefits; and
- Coercive pressures are minimized to ensure enrolment occurs on a voluntary basis.
To ensure that the choice to access services is not constrained by consent, the program is voluntary in nature. For consent to be genuine and disincentivized, it is delinked from the access to existing services and benefits.
Providing information around digital identities can be complex, especially when considering culture, literacy, education levels and other socioeconomic characteristics of the local population.
The process of ensuring informed consent is often a protracted one, which can be costly for both organizations and participants. Furthermore, success cannot be defined on a binary basis — an individual has achieved complete information, or not. There is a spectrum of program literacy and understanding that aggregates over time.
Larry Dohrs, Vice President, Asia-Pacific, iRespond shares, “it is important to spend a large amount of time pre-enrollment explaining the benefits and risks of the program to the individuals. The information needs to be provided through a number of different ways and sources, with an aim to ensure that the value is understood over time. You need to repeat, repeat and repeat.”
The complexities around program literacy and consent can be compounded when considering intersections of other potential vulnerabilities, such as gender, children, youth or other marginalized groups. Their access to resources (which could include communications around informed consent) could be diminished due to these other cultural and social barriers.
Emma Lindley from Women In Identity comments, “the World Bank estimates that in low income countries over 45% of women lack a foundational ID. ID systems being developed in a digital age need to be able to deal with the diversity of gender, race, education level and technical ability, amongst others. How consent is managed is important, and someone’s background will affect how consent needs to be explained, and how it is understood. Education is absolutely critical. We believe that a world where technology is created and led by diversity, can better produce identity products and services the world’s population actually needs, and more importantly that they understand.”
User-centric digital ID programs almost by definition cannot be achieved without informed consent.
How can anyone manage their own digital ID data, without understanding the nuts and bolts of the program? The approach towards ensuring informed consent needs to be inclusive in nature, in the local community.
“Ensuring informed consent is tough — it takes longer, requires dedicated user training, and simply costs more money. Moreover, it is important to note that the value placed on informed consent is context-specific and varies largely depending on where in the world you operate. Finally, informed consent can create a paradox of choice — the more detailed the information provided around data rights; the more likely individuals are to simply skip the process altogether,” shares Sebastian Manhart, Chief Operating Officer, Simprints.
Earlier this year, Simprints, an ID2020 Alliance Member, won the World Bank’s Mission Billion Challenge with an open source toolkit for enabling meaningful informed consent. Sebastian shares three steps to ensure the delivery of informed consent:
- Ensure top-level buy-in: it can help to paint informed consent and tight privacy standards as the gold standard and frame the opportunity to be progressive leaders by advocating for it
- Sensitize communities: leverage the influence of local, political, and religious leaders prior to the roll-out of the programme; and
- Customize strategy: draft succinct privacy notices which are tailored to the local language/dialect, take into account literacy levels, and vary depending on whether a child or adult is targeted
Informed consent forms a critical element towards ensuring “good” digital identity. However. this “better” model will not emerge spontaneously. In order for digital identities to be broadly trusted and recognized, we need sustained and transparent collaboration aligned around these shared principles. We need to place the local population at the center, understand their needs, capacities and incentives, and ensure that trust is built in the community.
We would like to thank Darren Hertz, Larry Dohrs, Emma Lindley and Sebastian Manhart for sharing their insights. We would also like to thank all the ID2020 Alliance members, Advisory Committee members and Program Partners for their support.
