Have you ever wondered what it would be like to be a parent of a child with Down's syndrome?
In a very raw and informative way, the first episode from the Guardian's The Gene Gap Common Threads series, gives us some insights into the attitudes and experiences of those mostly affected by chromosomal abnormalities. Science communicator Steve Scott from the Cambridge Research Institute, that works with DNA, in this first episode narrates and explains the relationship between DNA and identity.
The podcast examines genome editing and how this may in the future impact the lives of people affected by chromosomal abnormalities and those who care for them. The project involved discussions about DNA, genome editing, CRISPR techniques and the meaning of life with five different groups: science students in London, members of farming community in Cumbria, people from Black African Caribbean backgrounds in Birmingham, parents of children with additional needs in Hertfordshire and young people in Manchester.
For anyone unfamiliar with genome editing, this episode provides a basic and easy to understand explanation of DNA and genome editing. Scott manages to highlight and explain the often confusing terminology used in this challenging area of science. He takes listeners through the meaning of DNA, chromosomes, genes, genome editing and he talks about the 'new kid on the block', CRISPR. His informal choice of language makes it easy for people to follow through the difficult and complex meaning of the scientific jargon.
This first episode further allows listeners to gain some insight into the lives of parents of Down's syndrome children, parents of children with learning disabilities and other genetic conditions, such as sickle cell anaemia and epilepsy, and see how, despite the difficulties in their day-to-day challenges, the parents love their children and see enormous beauty and meaning in their presence in this world.
Listeners can hear about real life stories, dilemmas, difficulties and the daily lives of those that would benefit from genome editing the most. These accounts are moving and really show how science must take into consideration the people that may benefit from the techniques.
This episode mostly highlights two things: parents of genetically affected young people are not entirely familiar with scientific jargon, and that given the opportunity, most parents would not actually use novel techniques to change their children. Only one mother, Jane, from all groups said:
'My daughter has an extra chromosome and I would absolutely delete that and it is not to change her, it is to change that extra chromosome that holds her back.'
It would be interesting and of great value to explore in more detail the full range of views towards genome editing expressed by parents.
Other issues that were not fully considered included the opinions of those mostly affected: the Down's syndrome children and the people who struggle with learning disabilities. These people are presented as the driving forces behind the creation of technologies and scientific advances but their views aren't fully explored. What do they think of genome editing? What do they want for their future and how do they understand their lives? It would be of immense value to this podcast to include interviews with other Down's syndrome people and other genetically affected people.
Nonetheless, this episode raises awareness about how mothers feel and how much they value and appreciate their children. Sarah, mother of a 27-year-old daughter and a 20-year-old son with Down's syndrome highlights the beauty in the way her son sees the world. She states that as a society we should learn to appreciate the spiritual things, judge less, love more, share more kindness and, most importantly, we should focus less on time, money and materialistic objects. These characteristics which she says in this regard, she says, we have a lot to learn from her son Leon. She adds:
'By screening people out we are saying they are not worthy of being alive.' This statement encapsulates the ultimate question at the heart of this episode.
This episode made me think about some difficult questions about the value we attach to an individual's 'life', its meaning and how much this is based on the idea of 'healthy' DNA for a 'healthy' life. While these are questions that are very difficult questions to answer definitively, the podcast certainly provides food for thought as well and a very good introduction to DNA, genome editing and CRISPR. Moreover, this episode opens a conversation around the lack of knowledge people have on learning disabilities, chromosomal abnormalities, genome editing and DNA.
Overall, the podcast has provided first-hand narratives of real-life experiences from the lives of parents, young people and carers. We all need to remain conscious of the direct link between scientific research and how, in the future, it may impact the lives of those affected by genetic conditions.