This study evaluated the efficacy of two scripts, "It's not that Simple" and "It's Complicated," from the Drama of DNA method series. The Drama of DNA method is pedagogical approach developed US scholars Karen Rothenberg and Lyn Bush aimed to involve individuals in grappling with ethical challenges in genomics research through scripted plays. Audience members actively participate in these plays, including the ones chosen for this study. The first play titled "It's not that simple" focuses on the ethical implications of informed consent process in genomics research and its sequel titled “It’s complicated” addresses the implications of genomic sequencing and the return of results.
To tailor these methods to the South African context, the original scripts, initially situated in a US clinical setting, were adapted. These adaptations involved observations of genetic counselling sessions, participant recruitment, and discussions with clinicians and researchers in the field. The adjustments were made to account for language, cultural, and disease-related nuances, as well as issues related to privacy and confidentiality. Thus, the version of scripts used in this study represents an adapted version based on South African context.
Over six months, six consultative group engagements were conducted with 138 parents of children living with Neurodevelopmental conditions, involving the distribution of printed scripts, role-playing. Quantitative data was collected using pre engagement surveys to collect perceived beliefs about genetics and participation in genomics research. Qualitative data was collected through open discussion and focus groups to post each roleplay. Further reflections were collected through telephonic in-depth interviews at least a week after the community events.
The analysis included transcribing audio data, coding key dialogues, and assessing the key themes that were embedded in the scripts and participant reflections aiming to assess their resonance of the scripts with their experiences and capacity to raise awareness on ethical issues.
The first script “It’s not that easy” explored themes around participant recruitment into genomics research and highlights the intricacies of (i) Informed consent process, (ii) autonomy and decision making, (iii) confidentiality and privacy as well as (iv) community and social implications of participating in genomics research. The second script “It’s Complicated” explored participant resonance around themes of feedback of findings pertaining to (i) inconclusive results and (ii) the disclosure of incidental findings. The findings of the first script brought to life the challenges associated with informed consent among African participants. Through analysis of participant perspectives, the study uncovered participants observations around the significant gaps in the informed consent process, particularly regarding information dissemination and communication of research-related risks. Participants expressed concerns about the nature of the consent process, lack of clarity, the use of technical language, emphasizing the importance of comprehensive explanations in layman's terms. Around the theme of autonomy and decision-making, participants highlighted ethical issues around (i) coercion and pressure as well as (ii) Inclusion of minors in research endeavours. The theme of confidentiality and privacy drew from personal experiences fundamental importance of patient confidentiality in healthcare, particularly the right to privacy regarding their health information. The last theme explored in the first script, focused on community and social implications of participating in genomics research. This theme illuminated the family and social dynamics of participating in genomics research and the associated cultural belief systems and the pervasive fear of societal judgments. The second script tittled "Its Complicated" brought to light the implications of disclosure of information and feedback of incidental findings and their value to the participants including the associated belief systems and the pervasive stigma surrounding genetic conditions within communities and the clash between traditional beliefs and scientific understanding.
Authors: Lebogang Montewa, University of Cape Town; Jantina De Vries, University of Cape Town
