Should People have a Right to know their own Genome?

Presented by Dr Barbara Prainsack.

Our society produces unprecedented amounts of data today. Some of these data will be used in the health domain. Also the creation of genetic data has become much faster, and much less expensive; the result is that people can get their genome (all their DNA) analysed by private companies, and sometimes even in the clinic.

Although experts disagree about whether or not this is a positive development, virtually everybody agrees that we are far away from understanding what our genome data mean. Contrary to the expectation of some people, knowing our genome does not tell us what we will die of, or how long we will live.

Given these uncertainties, and given that we share large parts of our genomes with other people (about 50 per cent with siblings, parents, or children, and 100 per cent if you have an identical twin!), the question of whether people should have a right to know their own genome is not straightforward to answer.

In this talk, Dr Barbara Prainsack will present the most important arguments for and against – and will be very interested in hearing what you think. Should we have the right to know our own genome? If so, what would you do with this information? Would you discuss it with your family and friends beforehand? Or do you think that wanting to know our genome is a narcissistic desire that is best suppressed?

In the last ten years Barbara has been a visiting Fellow at the ESRC Centre for Economic and Social Aspects of Genomics at Cardiff University and visiting professor at the Department of Social Sciences at the Goethe University in Frankfurt am Main, Germany. She is currently the UK's representative in the EU Committee for Individuals, Societies, Culture and Health. She co-chaired the European Science Foundation’s (ESF) Forward Look on Personalised Medicine for the European Citizen. She is also an Honorary Senior Research Fellow at the Department of Twin Research and Genetic Epidemiology at St Thomas’ Hospital.

Tea, coffee & biscuits will be available.

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