What about Ethics in Design Bioethics?

INTRODUCTION

Design bioethics, as defined by Pavarini et al. (2021) is “purpose-built, technology-driven research tools” (1) that provide “the chance to leverage technological advances at the interface of engineering, design and computing to build theoretically relevant and reliable tools for empirical bioethics research” (2). While innovative and rigorous empirical research in bioethics is a laudable aim, using purpose-built tools raises important ethical considerations pertaining to equity in both design and implementation. These considerations are absent from Pavarini et al.’s introduction to Design Bioethics. In order to narrow the widening digital divide (Ramsetty and Adams 2020) and protect against digital discrimination (Weidmann et al. 2016), researchers and designers of Design Bioethics must center equity within the design process itself.

HEGEMONIC DESIGN BIAS

Researchers must consider how the “digital divide” may impact Design Bioethics. The digital divide refers to issues such as who has access to digital technologies, who has reliable internet or smartphones with the relevant specs, as well as concerns about whether a given technology is designed in a way that makes it more or less practical for certain users. A digital divide in Design Bioethics could reinforce rather than ameliorate existing inequities in who participates in and thus benefits most from bioethics research.

As an example of widespread inequities in research, consider the skew in genomics studies toward participants living in higher-income Western societies (Popejoy and Fullerton 2016). Technological design and implementation, without acknowledgement of the digital divide, might similarly push Design Bioethics toward conducting empirical research on the most privileged in society (e.g., Torous, Rodriguez, and Powell 2017); it could exclude diverse racial, ethnic, linguistic, and socioeconomic communities from consideration in the design process, in addition to the elderly and people with disabilities.

In order to ensure that diverse communities are included in research that informs ethics policy, acknowledging the social context of a design or technology is paramount. Pavarini et al. emphasize the importance of lived experience in context. They explain that context is important for moral decision-making (2) and stipulate that digital tools might provide “a more proximate ‘real world’ solution,” as they enable “judgements and choices to be embedded in (designed) context and social interactions” (40). As true as this may be, the authors fail to consider the ways in which judgements and choices come to be embedded in technology itself. Design decisions embed assumptions, some of which can be discriminatory, about who can access and meaningfully engage with a technology. Design Bioethics raises the potential to widen participation and access, develop new pedagogy, and co-create knowledge with diverse communities, but it must be done in ways that acknowledge and fight against both the digital divide and digital discrimination.

When researchers and designers do not engage differing viewpoints, or question the social and cultural assumptions informing the design of a research study or a technology, it can generate forms of “hegemonic design bias” (Meaney, 2019). Hegemonic design bias occurs when the design process is carried out by a homogenous, often privileged, group. The homogenous composition of the design team in turn produces data and tools that most benefit those from the same demographics. The result of this bias is a negative feedback loop, in which data and tools used to optimize future design become exclusionary, threatening equitable access, engagement, and distribution of benefits from the research.

LESSONS LEARNED FROM MASSIVE OPEN ONLINE COURSES (MOOCS)

Free Massive Open Online Courses (MOOCs) present a relevant example of how access and equity can be undermined when researchers and designers do not examine the assumptions and values underlying a technology (Lambert 2020). MOOCs provide cheap, open, and distance learning opportunities. They are frequently framed as a way to democratize education and address socioeconomic disparities in education. Yet, MOOCs have been variable in realizing this aim (Hansen and Reich 2015), in part because of hegemonic design bias. In the drive to promote innovation, many MOOC designers and implementers did not recognize the resources and scaffolding that would be necessary for many users to identify, access and effectively utilize these tools. The challenge the education community is grappling with when it comes to MOOCs—leveraging technology to realize equitable access and benefit—can be utilized to recognize the need for equitable design of Design Bioethics.

To successfully navigate these challenges, researchers and designers in Design Bioethics will have to recognize the potential for hegemonic design bias and proactively combat it by explicitly considering: (1) Who is included or excluded in the creation of Design Bioethics; (2) Whether the design of tools sufficiently attends to diverse users and employs techniques that engage these users in grappling with ethical questions; and (3) How design processes gather data and tools and work to optimize and learn from the user experience. To do so calls for intentionality in design choices and implementation procedures and introducing diverse perspectives into the creative design process.

RECOMMENDATIONS

As researchers explore Design Bioethics and what it can bring to empirical bioethical research, the field should prioritize three equity-focused actions: First, the field ought to include diverse perspectives in the design team and design process. Pavarini and team assert that purpose-built digital tools can “access groups traditionally underrepresented in bioethics research and theory” (37). This is critical for disrupting hegemonic bias and centering equity and justice in bioethics. Although Pavarini et al. focus on young people as an area where Design Bioethics can broaden research participation, there are many more communities whose perspectives and contributions are underrepresented in our field. Diversifying design teams and generating robust and equitable data means increasing access for and engaging underrepresented communities that include youth, but also those who have historically had diminished access to technology based on societal factors, Persons Excluded due to Ethnicity or Race (PEER), the disabled, and the elderly, among others.

Second, we should meaningfully recognize the contributions of diverse communities in any gamification or end products (Kreitmair and Magnus 2019). And third, we need to justly compensate research participants. These latter two points mean considering the tradeoff between selecting the most cost-effective approach and creating a model of compensation for co-creators and research participants that is equitable and yields high quality data. These actions will steer researchers in Design Bioethics away from exploitative practices (e.g., Semuels 2018) and encourage them to consider the ethical challenges of integrating participant perspectives into design.

Importantly, diversity among the design team in terms of their lived experiences and perspectives will surface and challenge underlying assumptions, ask new questions, and ultimately enhance the end product. When technological initiatives fail to include diverse designers and opinions, digital tools and games draw upon a narrower set of judgements and choices that may be “stale and retrograde” (Meaney 2019, 1). Empirical research of any kind is only as good as its input. Avoiding a negative feedback loop means diverse stakeholders and collaborative design.

If an aim of Design Bioethics is to create purpose-built tools that enable unique insight into normative and empirical issues in bioethics, then the co-creators of Design Bioethics and any subsequent research studies ought to be more expansive than Pavarini’s call for inter-disciplinarity among AI, design engineering, computer programming or human-computer interaction (45). Including a wider array of communities will shed light on equity issues within the design and implementation processes that are currently invisible; it will also enable more rigorous and robust empirical research in bioethics by raising new questions and challenges for consideration and exploration. To ensure Design Bioethics and the lessons we learn from it benefit all and not just some, more explicit integrations of reflection on equity in the design process is needed.