ELSIcon2024: Exploring Ethical Dialogues in genomics research: A Qualitative Analysis of the Drama of DNA Method in South Africa.

ELSIcon2024 • Paper • June 10, 2024 

Authors:

Speaker: Lebogang Montewa, MPH (she/her/hers) – University of Cape Town (South Africa)

This study investigated the effectiveness of two scripts, "It's not that Simple" and "It's Complicated," from the Drama of DNA method series in engaging participants and stimulating ethical discussions. Grounded in Reception theory, this research analysed personal narratives from parents who participated in Drama of DNA engagements, aiming to assess the resonance of the scripts with their experiences and capacity to raise awareness on ethical issues. To tailor the evaluation tools to the South African context, the original scripts, initially situated in a US clinical setting, were adapted, considering language, cultural nuances, and privacy concerns. Over six months, consultative group engagements were conducted with 138 parents of children with Neurodevelopmental conditions, involving the distribution of printed scripts, role-playing, and discussions on genomics research ethics. Guided by Reception theory, the analysis included transcribing audio data, coding key dialogues, and conducting a comparative analysis between script themes and participant discussions. The study explored themes related to genetic diseases, including knowledge gaps, belief systems, blame, rejection, parenting challenges, and mental health. Additionally, emerging themes related to Afro-pessimism and inadequate healthcare were uncovered. The findings underscored the intricate challenges depicted in the scripts, highlighting participants' resilience, proactive aspirations and voices advocating for institutional support, including counselling services, workshops, and comprehensive research to address the complexities explored in the Drama of DNA method. Overall, the study contributes profound insights into the implications of this method for discussions on genetic testing and ethical decision-making in feedback of findings in research and healthcare context. 

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