My Genomic Life: Who, what, when, why and how, “Imagine having your whole genome sequenced…”

Pepita Stringer pepita.stringer@nottingham.ac.uk
Lorena MacNaughten lorena@iceehealth.com

Abstract

“Imagine having your whole genome sequenced…” Increased availability of genomics services magnifies the importance of managing multiple genetic findings. It opens up space for hope ​in better health, medical breakthroughs and personalised medicine. Perhaps, more importantly, it raises questions of deepest significance. What happens when you contemplate your own genomic data, how to make sense of it.​... ​Or who owns it, how should it be delivered, by who and when, what about sharin​g?​ Last year, we ran an exploratory study to unveil attitudes and perceptions towards such matters, by laying down this simple proposition: “Imagine having your whole genome sequenced…”, followed by a set of semi-structured activities. This exploration took place through a workshop at Stanford Medicine X and by interviewing participants in England. We also inquired attitudes towards children genomic data. Accepting several limitations, our qualitative study revealed interesting and, at times, unexpected perceptions and attitudes towards complex health data. We trust these findings will be of great interest, as managing complex genomic information becomes more relevant to self-care, healthcare services, medical research and the wider society.
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