Author: Sahil Tandon (Research Associate, David and Lucile Packard Foundation – India)
A brief introduction to Ethics
Ethics in research can be understood as the ‘rules or norms for distinguishing between right or wrong, acceptable or unacceptable, professional or unprofessional’. The current day understanding of research ethics comes from a dark history of botched, violent and unethical clinical trials and research that led to the definition of core ethical principles like Respect, Beneficence, and Justice (as mentioned in the Belmont report).
The intent of ethical standards and practices is dual in nature:
- To protect the well-being of the participant and to safeguard against harm.
- To ensure integrity and quality of the research practices and findings, that can subsequently inform practice, policy, and the work across a particular field.
Thus, the guiding principles of ethics should be built into the entire process of research – identifying the research questions and methodological approaches, engaging the community and diverse stakeholders in shaping the research and its outcomes, validating insights and analyses with communities and contextualisation, developing evidence-based solutions and programs, and implementation of such solutions within the communities and contexts. It is also important to uphold these principles in research planning and processes around how we manage data, how we position that data to create impact, how the research gets communicated and to whom, and what the bearings of research findings might be on the community that has been engaged with to bring these out.
The importance of Ethics is particularly crucial when considering engagement with vulnerable populations and sensitive topics. Adolescent Sexual and Reproductive Health sits at the confluence of these.
By definition, adolescents are pre-adults, and fall into the legal categorization of minors – thus requiring higher standards of care and safeguarding. However, because of the social infantilism and legal dependency – adolescents are a vulnerable population group, with great internal heterogeneity and diversity, further marginalizing some sections even beyond the apparent age vulnerability. Being a precarious phase in the growth of an individual, with much exploration and confusion, it is important to ensure that as research subjects, adolescents are engaged responsibly, in a supportive and safe manner, that empowers them and builds on their sense of self. It is essential that these engagements are ethical, and focus primarily on the wellbeing of the adolescent respondents. At the same time, sexual and reproductive health (SRH) continue to be stigmatised, taboo and sensitive issues in most parts of the world, which pose various challenges and complexities to address and engage on. Hence, working with adolescents on SRH places the onus on us as practitioners to maintain and hold ourselves to the highest standards of ethics.
While the HCD processes are aligned with some of the key values of ethics, more nuanced thinking is required as it develops, to address the impact of the process and outcomes on the community.
The Human Centered Design (HCD) process explores innovative ways to engage with and bring participants into the creation and development of research and solutions. Many principles that contribute to ethical considerations, like participation and inclusion, empowerment, seeking feedback, adapting and iterating, are inherently woven into HCD approaches. However, efforts can still be made to adopt and adapt practices and standards from conventional research into HCD approaches that can enhance ethics. In doing so HCD approaches can uphold aspects that seek informed consent, manage and capture data ethically, ensure privacy and confidentiality, conduct risk analyses to develop mitigation strategies, and make sure to safeguard participants against all harm.
Data collection in HCD often involves capturing pictures, audio/video recordings, in-depth qualitative testimonies and experiences, etc., which might be sensitive in nature, needing particular care in safeguarding, analysing, and communicating. For example data in the forms of video/photo footage, which are seemingly innocuous and support creative elements of the design process, might pose significant risks to respondents and communities in case of a breach of privacy. Particularly with topics of sensitive nature and communities which are vulnerable, it is imperative that we minimise any potential risks. This urges HCD practitioners to think more critically about the kinds of data collected, and how it is managed and communicated. Another potential concern might be around the practice of prototyping. A high level of consideration and care needs to be placed on the design of prototypes and their roll-out and testing with the community. Experimental design and innovations cannot be at the cost of human wellbeing. It is also important that these be communicated transparently to the users, to set expectations realistically and early on, especially when participants may not fully understand what being part of a test is. A gap in this communication can have detrimental impacts on the research subjects, especially if it pertains to essential needs around SRHR.
Ethical considerations as a community of practice
As a community of practice engaged in SRHR, it is essential for all of us to centre Ethics in our work and functions. The fundamental pillars of ethics – Respect, Beneficence, Justice, Autonomy, Truth-Telling – should be at the core of our strategies and approaches, as program implementers, researchers, designers, or funders. This entails systematic, conscientious, and collaborative efforts to uphold ethical standards and principles – equity and empowerment, diverse representation and equal participation, agency and autonomy, accountability and transparency.