From Your DNA, Your Say

Event Review: Who owns your genome?

Early findings from Your DNA, Your Say were cited in this BioNews article by donating to the 100k Genomes Project

Event Review: Who owns your genome?

3rd October 2016

Excerpt from article:

“Do you know who owns your genome? And who, if anyone, would you choose to give your genetic information to? This debate, organised by the British Science Association and supported by Genomics England, covered the cutting­edge issues in genomic ethics and legality….

The panel generally agreed that such industry involvement is an inevitable aspect of our capitalist society and a vital part of drug development. Not all those who had donated their genome to the 100,000 Genomes Project felt the same, however – one donor challenged Professor Caulfield during question time, saying that he would rather not have the involvement of any private companies with his data.

This attitude is a very common one among the public, revealed genetic counsellor Dr Anna Middleton, who is head of society and ethics research at the Wellcome Genome Campus. She found that the majority of people would share their genetic information with their doctor and non­profit researchers but that far fewer would choose to share altruistically with a for­profit company. Interestingly, she found that people feared being inappropriately targeted for marketing, rather than being discriminated against for life insurance (which, she assured us, is a fallacy anyway).”

Related Link:


Steer, I 2016. Event Review: Who owns your genome? BioNews [Online] Issue 871. Available at: [Accessed: 14 February 2018]