If donating your DNA to medical research would aid in treating rare genetic anomalies, would you? If something in your genetic code could unlock a way to personalize cancer treatment for others, would you allow medical professionals to study it?
Together with Genomics England, we posed this question to university students at UCL in Central London to see what they thought. In a digital age where nothing is truly private, is your DNA any different than the photos you share on social media or putting your credit card information into Apple Pay?
One of the biggest issues students continued to bring up were those of anonymity as they would not want their name to be associated with their DNA sample.
I’d be happy to donate my DNA as long as there was security on the data that I’m giving to the company. I’d want to know that it was anonymous and not attached to any personal details. I wouldn’t mind not getting the details back if it was anonymous I could go to another service if I wanted to get my health checked up. Charles
When asked to elaborate on anonymity, one student said even if something in their genetic code made them susceptible to rare illnesses, they still would not want their information to be attached to their name.
I suppose you can get tests yourself separate from the study if you want, so I think I would definitely want it to be secure and anonymous. Liam
A few students we spoke with came from a public health background and were interested in the greater picture of the research.
I come from a public health discipline, so yeah, I’m always interested anything that can benefit the health of the population, but I’d also want to know where my information is going and if it would be going to anything more than a specific piece of research or if it would be passed on to other commercial uses. Sophie
I’m from a public health background so I would fully agree to use my DNA information but I suppose it also depends on the objectives of the study and what is the use of the information that they would take. I think that would be the major question. Matias
What kind of medical research is the DNA for, who is founding it, and what are the final objectives? I think I will say I am willing to donate my DNA as long as I know the objectives. Carmen
As long as I fully understand how you’re going to use it and how safe the data is, that’s probably my only problem. Kay
One of the worries wasn’t even regarding anonymity, but whether or not the procedure would hurt.
Of course I would be interested in benefiting the medical field but it would be like, what kind of DNA would you be taking and whether it’s invasive or not. If it’s just a swab that’s fine with me. And definitely see what it’s benefiting and if it’s limited or not. Will it continue to go through generations and be misused, or would it just be for this study? Lynn
And other students were completely selfless in their views.
If it would help someone, or help someone’s life, if someone needs something that I have I’d be happy to help. Maureen
Even for a generation who share everything online, there are still reservations when it comes to health information as, for them, it feels like the last thing they have that is private. Sharing photos of a house party is not nearly as invasive as sharing private medical details. Though students are willing to help better the medical field, they do still want to know that what is theirs is theirs and is not being misused or given to companies who can exploit their potential illnesses.
Let us know what you think, tweet us @vergemagonline with the hashtags #DNAgeYes and #DNAgeNo.
To find out more please visit https://www.genomicsengland.co.uk