The Ethics of Personal Data Collection: A Spectrum of Experiences from Kenya, India, and The Gambia

Introduction The increasing use of mobile communications technology, the greater reliance on big data, and the ubiquitous influence of social media networks are transforming the ways human rights advocates and technology entrepreneurs conduct data collection in fragile environments. At New York University, the Bosch Workshops bring together colleagues, human rights advocates, NGO leaders, and university professors who otherwise would not meet, to discuss local initiatives that rely on societal engagement. These initiatives depend on mobile apps, crowdsourced data, and forensic science to address violations of human rights ranging from sexual violence in conflict in Kenya to physical assaults on women in India to genocidal rape in Kosova and Kosovo. In each context, there are ethical concerns. In the wake of the Cambridge Analytica scandal, it is imperative to ask how inappropriate and illegal use of personal data by companies is likely to intersect with civil society movements and digital humanitarianism, particularly in "areas of limited statehood" (Livingston and Walter-Drop Oxford, 2014). Case Studies The ethical challenges of personal data collection are specific in localities where the state is partisan (Esman Polity, 2004) rather than failing, absent or impartial. Several of the case studies in the Bosch Workshops make inquiries about the effects of information and communication technology (ICT) in areas where the state is contested with a focus on the nexus between personal data, ethics, and human rights. The initial studies feature scale-ups involving Kenya: the first, MediCapt, is a mobile phone app developed by the Program on Sexual Violence in Conflict Zones at Physicians for Human Rights (PHR, based in the U.S.) to help clinicians more effectively collect, document, and preserve forensic medical evidence of sexual violence to support the prosecution of these crimes. The MediCapt pilot in the Democratic Republic of Congo is analyzed in a previous Bosch Workshop publication (Naimer, Brown, and Mishori University of South Florida, 2017). Its introduction in Kenya is at one end of a spectrum of cases in which technology from the Global North is developed in consultation with local stakeholders in-country. The second case, Safecity, provides a platform that crowdsources personal stories of sexual harassment and abuse in public spaces in India. As the flagship program of the Red Dot Foundation Group, Safecity works at the intersection of gender, technology, communications, data, and urban planning, primarily, although not exclusively, in Mumbai. Safecity's data, which may be anonymous, gets aggregated as hot spots on a map indicating trends at a local level. Its use of a mobile app and the platform Ushahidi to crowdsource stories of abuse applies technology to collect thousands of stories in cities across India and beyond (Goodney Lea, D'Silva, and Asok Palgrave Macmillan, 2017).

Ushahidi, which means "testimony" in Swahili, is a technology exported from Kenya after the post-election violence in 2008. It is a tool developed locally in Nairobi by a social enterprise that provides software and services to numerous sectors and civil society to help improve the bottom-up flow of information. Safecity's use of the Ushahidi platform represents a specific application of Ushahidi to crowdsource the stories of citizens harassed in public spaces. The designs of MediCapt and Safecity respect the ethical concerns about the vulnerabilities of the women and girls involved in these case studies, which determines the selection of the technologies in question. Consultations with members in local communities, including physicians, police, and prosecutors in the case of MediCapt and a community of volunteers to implement the Safecity initiative in Mumbai, figure prominently in the research. These scale-ups can support an assessment of whether improved communication and access throughout the country allow for products and services to reach the most vulnerable in civil society (Kovačič and Lundine in Livingston and Walter-Drop, eds. Oxford, 2014). In any consideration of scope in technology's reach, ethical concerns pertaining to the influence of telephony firms as well as state leaders prompt a specific research inquiry: Are these pilots designed to evaluate the ways personal data may be inappropriately accessed, thereby increasing the vulnerability of the masses? The Bosch Workshops team is aware that the development of technology in tandem with the future transformation of the way cities are built in Africa offer Kenyans—as well as Nigerians and Gambians—opportunities to nurture a next generation of architects. These designers may cooperate with movements in each of these countries, which could emerge like The Human City Project in Nigeria (Lier, Nolan, Gemert, and Hesselink.What Africa Can Do for Europe: 31 Brilliant Ideas That Can Inspire the World, 2016). The Human City Project is a community-driven media, architecture, planning, and human rights movement in Nigeria that works with marginalized communities to develop their voice and create a more "human city." The next round of case studies in the Bosch workshops explores pilots that contend with issues of ethics in personal data collection in contexts that complement those of the subjects in the first round of cases. In addition to grappling with the contested role of the state, these subjects also contend with the role of powerful firms in rapidly changing contexts, as in The Gambia. The first case involves Pathways, a skills formation and training program anyone can use to develop individual capabilities. The platform is developed by the Making Our Visions and Aspirations Reality (MOVAAR) Group (a grassroots Gambian organization) which supports underserved individuals as well as small and micro enterprises to develop capabilities and competencies. In its pilot state, the Pathways platform was initially introduced as a Skills Formation Program in The Gambia, while MOVAAR developed the needed technological capabilities to digitize its new skills acquisition purpose. It made use of real environments to coordinate user experience, which also required the integration of existing infrastructure in the local area of operation i.e., The Gambia. The coordination processes involved depended primarily on paper-based data collection methods. In the context in which MOVAAR was introduced and the Skills Formation Program launched, ordinary Gambians uncharacteristically expressed the power of their voices through political change and unleashed themselves from many years of censorship, civil and human rights abuses, and propaganda. Gambians, and in fair part, the West Africa region, imploded in December 2016. While many refused to participate, a brave few—some of whom lost their lives—spoke up. Not surprisingly, technology played a major role in their success; yet, another contribution was the networks of voices that formed the diaspora (Bessant, Kaplinsky, and Morris 2003). MOVAAR was successful in capturing the opportunity this synergy provided to expose a model that gave users a relatable identity and allowed them to push its limits. More importantly, MOVAAR connected cross-generationally and dispersed individuals into small groups that could explore possibilities in their communities. MOVAAR's digitization strategy was implemented in three stages and simultaneously enabled the group to build up organizational capabilities to manage that process as well as future growth. Initially, open source platforms like Facebook and WhatsApp were used to engage participants in the program and more importantly, promote interaction with each other. MOVAAR managed the issue of consent by requiring participants in the program to authorize consent in the collection of their personal data equally across cases where provided directly to MOVAAR or indirectly via third party platforms. In the second phase, an in-house digital platform was developed to supplement the use of third party platforms by program participants. The output of this activity was the creation of a web portal, which gave users access to a secure private account managed by MOVAAR onto which personal and other user data could be uploaded. In the third and final phase, MOVAAR completes the digitization of the Skills Formation Program by creating a mobile app i.e., Pathways, seeking to provide "access to skills acquisition programs at the fingertips of everyone everywhere." In using Pathways to scale up the Skills Formation Program, MOVAAR recognizes the potential of the program becoming increasing susceptible to large firms that have the resources to access and request for user data, legally or otherwise. In conflict or post-conflict societies, the relationship between state and non-state actors, like large private sector players, can blur rather quickly. Given their domain in communications, telephony firms in particular have a wide net of influence over the citizens of the states in which they operate. This interest goes beyond the nature of marketing purposes; it is also driven by a push to recruit "vetted" talent. As a result, entrepreneurs are faced with increasing pressure to manage user data ethically given the monetization potential of this data, which could, and does, occur without the knowledge or consent of the scale-up or the individual (s) concerned. States and large firms possess sophisticated capabilities to mine and access this data in diverse formats as well as to also limit and even halt the transmission of data. In post-conflict contexts like The Gambia, where its citizens are only beginning to re-experience human rights and civil liberties like freedom of speech, the slow process of democratic change provides a unique opportunity for societies to rebuild (Freedom House 2018). The process might also take the form of redrawing relationships between public and private entities as well as relationships within those entities, and, secondly, creating roles for new actors, such as entrepreneurs. Subsequently, there is the need to rediscover the potential for entrepreneur-led development in our societies and to nurture that process in an increasingly changing world. MOVAAR is succeeding in recreating the relationship within and between sovereign actors by creating strong independent, yet interlinked, global networks both online and offline. Like the "human city" project, MOVAAR is building multi-stakeholder cause-driven spaces or clusters with the capabilities to respond to human needs at a communal level where the state may not have the priorities or resources to intervene. Unlike the scale-ups in the first Bosch case study, MOVAAR seeks to develop in-house technology sourcing talent from the Global South. This technology seeks to manage the safeguarding of personal data of its users; yet, given the susceptibility of all technological platforms to hacking, MOVAAR can only ensure that in opting to use this technology, users are not more vulnerable to losing their personal data. Sociocultural factors, including poor education systems, lack of post K-12 prospects, and frustrations, stripped many, including youths most severely, of their confidence in the job market, in further education in The Gambia, and even in their own skills (Jagne 2016). MOVAAR's Skills Formation Program responded to this bleak reality by seeking to reveal possibilities in a human-centered approach. It warmed people to the idea of liberating themselves from the burden of their data by rebuilding their confidence to share data responsibly while reflecting trust-building and ethical responsibility. Specifically, this objective was achieved in the creation of personal development pathways to make that data yield dividends for its owners. MOVAAR and other scale-ups in this study must safeguard this data to find creative ways to use Information Communication Technologies (ICTs) to build trust in fractured societies. This process is indispensable to achieve peace and prosperity in these rapidly changing times given the advent of artificial intelligence, big data, and virtual worlds. States must seek out similar human-centric, entrepreneur-led development efforts to increase their ability to address the challenges facing both developing and developed countries. Conclusion Inherent in the choice of technology for any case study design is a research objective to build in resilience as a structural feature for the local area. Given the challenges developing countries face in the 21st century, the choice of technology in the local design of an initiative must respond to local citizens' needs. Since the state does not consistently respond to these needs, local design that is attentive to the interplay of personal data, ethics, and human rights must complement a characteristic of resilience: a special kind of clustering, one whose hallmark is density and diversity—of talent, resources, tools, models, and ideas. (Zolli and Healy Simon & Schuster, 2012). In facing ethical challenges of data collection, the local context provides the learning curve through which the impact of ICT on society, whether civil or predatory (Goldstein and Rotich Harvard, 2008), may be considered. User uptake of the technologies in the case studies above forms another dimension which the designers of these technologies must consider as they operate in such fragile environments. Creating a user-friendly interface for platforms that uphold the promotion of human rights, ethics, and personal data, is as crucial to the change process as ensuring that those areas are safeguarded. In limited statehood contexts and fragile environments in general, low technological capabilities have limited the prospects for innovation and naturally, locked entrepreneurs into solutions that are only as complex as the problems they seek to solve. Essentially, they are only as functional as providing the user with access. In fact, the solutions need to be able to go further (Abramovitz 1986). For instance, the users of these technologies and platforms must first have a sense of social value and value for personal data or privacy, to fully experience user rights and not just benefit from gaining access. Consequently, we see that firms are the first and sometimes only beneficiary of user data because too often, users fail to place any value on their personal data. This can also be due to lack of awareness about user rights and the application of personal data in general, which some firms exploit. As citizens realize and express the power of their voices or preferences via Information and Communication Technologies (ICTs), their environment or their local contexts also change as a result. A large part of that change is and has been led by entrepreneurs through entrepreneur-led development efforts. However, the state and the policy or regulatory environment also plays a major role in the roll-out of new technologies or initiatives which can either be accompanied by positive or negative implications, or both. Essentially, the onus to ensure the resiliency of these platforms lies on both the state and the private sector. A sound regulatory environment already paves the way for medium to large firms to fill the infrastructural market gaps that small and micro enterprise entrepreneurs can then exploit to develop and provide solutions (Perez 2012). The existence of these medium to large firms in a specific context is indicative of the level of openness of that market and the existing technological and other infrastructural needs for entrepreneurial success. Technological innovations, including software innovations, may be perceived as the most radical forms of innovation (Bell 1995). Yet, social innovations must play an increasing role in these contexts, no matter how nascent the industry. Programs that equip citizens with the readiness to realize, engage, and adapt their personal data must be promoted as compatible with efforts that portray the wide-reaching, largely positive effects of information and communication technologies (ICT) in conflict, transitionary, and post-conflict situations.

The authors thank Amélie Godfrey, MA IR Program, New York University, for her assistance and congratulate Karen Naimer, Director, Program on Sexual Violence in Conflict, Physicians for Human Rights, as MediCapt wins the 2018 MIT Solve Challenge Finals.

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