On a night threatening rain about 25 people came together to discuss Open Genomics in a lab at the Edge, overlooking the Brisbane river. The debate was led by two experts: Mark Crowe, a BioInformatics Scientist and Naveen Sharma, an Information Risk and Compliance Manager. Mark spoke in favour of opening genomic data and his paper can be read in full here at the QFAB website and Naveen noted the risks of data misuse, which can be read here.
Tools for genetic testing are becoming more advanced and less expensive, therefore are increasingly prevalent, and so more profiles are being created. The benefits of conducting genomic analysis on massive datasets were clearly asserted by Mark Crowe, and Naveen Sharma described several examples of risks with open data, and in conclusion quoted Professor Ohm: “data can either be useful or perfectly anonymous but never both.”
An active discussion ensued and was focussed not on the future, but on what’s available to the public now, such as 23andMe.com kits that provide genetic reports and uninterpreted raw genetic data. It was noted that 23andMe now have the world’s largest autosomal DNA database and they can no longer offer health-related genetic reports after legal action. The National Geographic Genographic project also allows anyone to identify their genome ancestry, and holds over 660,000 profiles – which can optionally be shared with other study participants.
We envisioned a hypothetical future Gattaca-like dystopia of genotype profiling, eugenics (genetic manipulation) and discrimination where DNA determines social class. Will we see diseases eliminated via selective breeding, and as a further step will we see differences treated as abnormalities?
Will genetic data availability increase pressure on our medical services for non-threatening treatments and personalised medicine? And is this beneficial because it is less costly to prevent medical issues than treat them? What will the impact of increased demand be on Genomics experts and their analytical tools?
A theoretical issue was raised of insurers using genomic tests to decline insurance customers for illnesses to which their tests indicate a predisposition. Mark Crowe replied that on the other hand it’s positive because some insurers, once a predisposition is identified, will pay for preventative measures because they cost less than treatments.
Through discussion it became apparent that the question really is a highly personal, sensitive one: ‘am I, as an individual prepared to make my private genomic data public and identifiable to me?’ as per the Personal Genome Project. A voluntary ‘show of hands’ vote was called for and the count was only slightly in favour of yes.
However we all agreed the public shareable release of genomic data is a complex growing issue that the Australian government should address in more detail, and importantly must begin the process now to ensure it is in place before rather than during or after genomic data use becomes more prevalent in Australia. Although genomics analysis is still in its relative infancy, beginning the process of a regulatory response now is vital given the US took ten years. A second step is forming agreed global industry standards for use of genomic data, including open data. It appears this is in train, with the Global Alliance for Genomics and Health meeting in March to begin a coordinating the development of standards, addressing openness, interoperability, regulatory barriers and discovery.
Discussion continued overtime until we needed to exit the venue as it was closing…. so please feel free to add your comments and thoughts here to continue the conversation. Anna, James and I look forward to the next debate!
Image: DNA origami by Alex Bateman CC BY 2.0