18 October 2010
ByAppeared in BioNews 580
Twelve members of the Genomes Unzipped project have made their personal genetic data publicly available online. By sharing their genetic data, the project aims to guide discussion about the risks, benefits, and limitations of genetic information, and the issue of genetic privacy.
The participants - including active researchers in genetics, and specialists in legal and public health issues related to genomics - had their DNA tested by the personal genomics company 23andMe.
Dr Daniel MacArthur, the geneticist leading the project, said: 'We hope that by sharing our experiences and publishing our data, people will see the genome in a clearer light. We want to show that genetic information need not be frightening and that the risks of publishing data can be managed'.
With the ability to test your own DNA becoming widely available from 'direct-to-consumer' companies like 23andMe, the Genomes Unzipped project aims to dispel misconceptions about the uses and misuses of genetic information; to equip the public with the tools to explore this genetic information; and to teach the necessary concepts in genetics to understand the implication of any findings.
The experiences of two members of the project highlight the uses of personal genomics, as well as its limitations and potential ethical pitfalls. Dr MacArthur learned little of relevance about his own health, whereas postgraduate geneticist Luke Jostins found he was at increased risk for age-related macular degeneration - a leading cause of blindness.
The finding came as a surprise as Luke has no family history of the disorder, but as he pointed out: 'It is information I can act on. There are treatments, but they work best at an early stage. I'm 25, so I'm not at risk for a while, but it is something I will have monitored later in life'.
This highlights both the potential advantages and disadvantages of such data, because some individuals will see this information as empowering, whereas others may react differently, and end up constantly worrying about their health. However, this project is not the first to share genetic data linked to personal information - The Personal Genome Project has done the same, with a similar goal of making personal genomics more accessible and helping educate the wider public.
These projects acknowledge the risks associated with personal genomics, such as potential discrimination from insurers and employers, but believe that the risks involved are exaggerated, and that the benefit of having large open-access databases of genetic information outweighs the risks.
However, other groups see this as a slippery slope to genetic surveillance, and are likely to raise concerns about data privacy, and the use of such information in the future. The Genomes Unzipped genetic data and tools can be accessed via their website, and are available for anyone to use.