“If you know it, I’d like to know it too” – involving participants in genomics research

This blog post from the Nuffield Council on Bioethics was guest authored by Anna on findings from her work on the Deciphering Developmental Disorders (DDD) study
2nd March 2015

Excerpt from article:

Guest post by Dr Anna Middleton, from the Wellcome Trust Sanger Institute, who spoke at the launch of the Council’s report on biological and health care data.

My career has explored, from multiple differentperspectives, the impact of genomics on people.Genomics refers to the study of a person’s 20,000 or so genes. Given the almost infinite ways that people can be genetically different to each other, genomic research often needs to be done on a very large scale in order to be able to interpret the significance of findings, particularly a rare genetic change. So, Big Data and Genomics go hand in hand.

Citation:

Middleton A. (2015) “If you know it, I’d like to know it too” – involving participants in genomics research. [Blog] Nuffield Council on Bioethics. [Online] Available at: https://www.nuffieldbioethics.org/blog/if-you-know-it-id-like-to-know.  [Accessed: 19 November 2020]