On Saturday September 20th, CAfGEN (Collaborative African Genomics Network) returned to Teen Club to continue the lesson in genetics with more depth and to engage teens in a debate of the ethical implications of genomics research.
After a review of the CAfGEN project that will be conducted in Botswana and the “Genomics Part 2” lesson lead by Nurse Masutlha, teens split into small groups. With a better understanding of genomics, from DNA all the way through sequencing and analysis, teens were encouraged to think about something different: the ethical use of genomic data. The groups were lead by volunteer facilitators who guided teens through scenarios focused on the use and interpretation of genomic data. I lead a group of four teens through a hypothetical scenario where a genomics study identified one tribe in Botswana with a genetic predisposition to depression.
In an effort to tie in their prior genetics lesson, I told each teen that they were a different village and “sequenced” their genome. I was A-A-A-T and my village was predisposed to depression. The teens were A-A-A-G,T-A-A-A, A-A-A-A, and A-A-A-C, none of which predisposed their villages to depression.
My first question to them was: “Do you think it’s good or bad for people to know the results of the study?” They looked at me with quizzical expressions for a few minutes as I tried to re-word the question. Finally, one teen said “I think it would be good because your village could be given help.” Everyone agreed—by knowing that there might be a problem, people could be prepared and provide proper counseling services for the villagers.
Next, I asked them, “Would you want other people to know if your village was the only village predisposed to depression?” One teen said yes and explained that he likes to be transparent. He is HIV positive and prefers it if people around him know his status, but he also said that sometimes it’s hard to tell people. When I asked why, he explained that he’s afraid to tell some people because it might change how they treat him. After hearing his response, I asked the question again and the teens were less confident with their answers: “I don’t know,” “I’m not sure,” “I have to think about it.” They could understand how the information could be beneficial by allowing more services to be provided to those with a predisposition to depression, but they also worried that the village could be stigmatized for being different.
Finally, I asked them, “If you were genetically predisposed to depression, would you want to know?” All four teens said they weren’t sure and explained why. Some leaned toward yes because they could watch for the symptoms and ask for help if they needed it. Some leaned toward no because they didn’t want the burden of always being worried that they might have depression. One teen worried that knowing might make someone who is predisposed to depression become depressed!
In the end, the teens couldn’t tell me definitively who they thought should have access to genomic data; they all wanted more time to think about it. Ethics is hard. Even though some of the science was above their level, I was blown away by the teens’ responses. I told them how proud I was of them for being able to think of so many possible outcomes. The teens were reassured when I told them that many people say the exact same thing that they did: “I need more time to think about it.”
This CAfGEN lesson pushed the teens out of their comfort zones by making them think about challenging ethical questions and form their own opinions from the information presented. From my perspective as a facilitator, the teens opened up during this exercise because it made genomics more accessible. The teens were no longer listening to a lecture, they were engaging in the information in an interactive way that made it fun for them. They got to think and talk and share their ideas with their peers.
Though maybe the teens didn't understand all of the science behind DNA and sequencing, they all understood how relevant genomics could be in the context of their lives.
See our photo below for more insight!