Future Debate: Would you share your DNA?

"The data collected have huge potential for improving the health of everyone, but genomic data is the most personal type of information, requiring special care and attention."

13th November 2018

British Science Association Aberdeen Branch event: "Future Debate: Would you share your DNA?"

The British Science Association Aberdeen Branch hosted a Future Debate about the benefits and risks of sharing data, specifically genome data, to improve the way we diagnose, treat and prevent serious illnesses.

The context for this debate was the unprecedented amount of data now being collected routinely about our lives, and an ongoing research study by Genomics England and the Scottish Genomes Partnership to collect the full DNA (or genome) of thousands of volunteers for research as part of the 100,000 Genomes Project. The data collected have huge potential for improving the health of everyone, but genomic data is the most personal type of information, requiring special care and protection. Discussions are underway in Scotland about how the NHS should use genome tests in medical services, and some people are concerned about the blurring of boundaries between research and clinical use of data.

The speakers at the Debate were:

Dr Lynne Mennie, who is Project Manager for Scottish participation in the 100,000 Genomes Project through the Scottish Genomes Partnership, based at the University of Aberdeen.

Dr Heather Morgan, a social scientist at the University of Aberdeen Institute of Applied Health Sciences with research interests in digital health, and who advocates for sharing data about yourself.

Dr Jonathan Pettitt, a geneticist at the University of Aberdeen working on the structure and expression of collagen genes in nematodes.

Dr Sarah Christie, a lawyer and ethicist from RGU with research interests at the interface between medical law and criminal liability.

Professor Abbe Brown, an expert in intellectual property law at the University of Aberdeen and a member of the Public Benefit and Privacy Panel which scrutinises research access to NHS Scotland data.

The speakers considered questions around how data should be stored, who should have access, whether everyone’s genome should be analysed at birth and if there should be a moral duty to donate your genome in the same way as blood and organs.

An audience of around 30 people discussed a range of topics with the panel, including:

  • What genome sequencing is and what information you can get from it

  • Who "owns" the information in a genome

  • What informed consent means

  • Individual vs societal good

© 2019 Scottish Genomes Partnership

Scottish Genomes Partnership gratefully acknowledges the funding received from the Chief Scientist Office of the Scottish Government Health Directorates and the Medical Research Council Whole Genome Sequencing for Health and Wealth Initiative.