Presented at
33C3 (2016),
Dec. 30, 2016, 1 p.m.
(30 minutes).
The genome – the final frontier – or just a complex mess of letters? Somewhere in there, our eye or skin color is hidden. But also, diseases can be diagnosed or predicted by analyzing the genome. More and more research is committed to finding clues for diseases in our genes. The opportunity is clear: If I know about a disease I might get ahead of time, I could possibly intervene before it starts. Yet: How accurate are these predictions and how meaningful are they? And more importantly: What happens to my genetic data once it has been decoded?
Genetic data is quite valuable, but not just for researchers, but also for health insurances, other insurers, law enforcement and employers. However, that genomic data can always be re-identified, since it is a unique pattern. Therefore, genomic data needs to be secured.
In my talk, I would like to point out the possibilities which have arisen by whole genome sequencing, that is the complete decoding and analysis of one person’s genome. This milestone of biological research is important for medical advances such as personalized medicine. But it is also subject to commercialization. For ever more decreasing prices, one person can easily sequence their own genome and get access to information on heritage and possible risks of genetic diseases. This means that private companies are accumulating massive amounts of whole genome data. Additionally, third parties could send in probes of other people, which they can get quite easily. But how do we interpret the data? Even though people tend to believe that the genome holds many answers to diseases and risks, this has been a misconception. For most diseases, the environment, lifestyle and maybe even just bad luck play a much more important role.
Still, many researchers are trying to analyze more and more genomes, especially in cancer research. Genetic predispositions for cancer are usually quite small probabilities, so a large sample size is needed to get reliable results. The limitless demand for more data is problematic on its own; however, getting informed consent from donors is also a problem. Once sequenced, one whole genome sequence can be about 150GB in size, which causes problems for transmitting and analyzing it. Today, genomes are shared via cloud or, interestingly, on hard drives via post. But international exchange of data also means that different legal and data security standards are mixed.
Whole Genome Sequencing provides us with opportunities for medical and biological science, but with challenges in ethics and privacy.
Presenters:
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_Adora_Belle_
My name is Anna Müllner, I am a German medical Biotechnologist. After finishing my PhD in cancer research, I am now working for a life science communication company. I am also a science blogger, podcaster and science slammer. I have long since been interested in data security, for medical data in particular, ethical issues in science and evidence-based medicine. I would be happy to present at the 33c3, at what will be my third time at the c3.
If the need should arise, I can give German translations of slides and uncommon biological terms to the translators.
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