Share or Perish

I first heard the phrase «publish or perish» from my Dad, when I started my PhD. Its projection onto the problem of high-dimensional data analysis in the context of human genomics using the word «share» came very intuitively ... agreed, after some previous thinking about the problem not related to writing this post.
The fact that in order to gain understanding of relationships within genomic data a large quantity of data is required, is getting increasingly popular. Nevertheless, most people (or institutions) draw the wrong consequence from this; they produce more and more data, since the technological advance enables them to, and store it in isolated silos. Often they do so while wasting precious time on collecting enough data instead of analyzing the proper amount.
The correct consequence would be to realize that public interest is served best if researchers around the globe would coordinate their efforts to make genomic data available to one and another. Moreover, these data need to be interoperable and thus adhering to certain standards such that the overhead of using the data can be held as small as possible.
Coalitions like the Global Alliance for Genomics and Health or national-funded resources like ClinGen are already sparking this idea and even going several steps further by suggesting standards also for bioinformatics and biostatistics methods.
The ongoing reality of centralized and isolated databases shooting out of the ground like mushrooms never reaching a critical amount on their own is a waste of money! Everyone needs to open up their mind towards the solution of sharing data to reach insight and discover patterns obscured by the traditional way of data hoarding.

Expectation Management - a great danger in PM

Who hasn't had it? You go to the movies to see that great film you saw that blasting trailer earlier. When the curtain closes you sit there, disappointed. You had such great expectation for the film...

That is the core of the problem. With great power comes ... erm, sorry, with great expectation comes (potentially) great disappointment. This is why we need to be very careful with promises about PM and always manage the expectations of our clients/patients.

Recently, Ben Goldacre wrote about a similar problem of academics exaggerating their findings especially in press releases (http://www.bmj.com/content/349/bmj.g7465.full?ijkey=pdGfXk42ClHVR4e&keytype=ref). He also offers a straightforward solution to the problem: accountability and transparency.

Not so new kid on the block - Digital Disease Detection

Interesting paper by Vayena et al. (http://journals.plos.org/ploscompbiol/article?id=10.1371/journal.pcbi.1003904) about the ethical/political challenges engulfed in collecting big data about potential disease risks within (partially) contributing​ populations.

However, they took on a simpler subject than we are facing in Personalized Medicine, where not only the potential loss of your flock as a reporting farmer is a risk - though certainly tragic enough - but your genetic predisposition as a whole might be at stake. Anyhow, the approaches to get to a useful situation both economically and legally will be similar. Transparent, governed and secure steps, developing iteratively on-the-fly will lead to the situation we want to be.

Das Pferd frisst keinen Gurkensalat

The first sentence ever sent over a phone line by Johann Philipp Reis in 1860, which translated to english means: «The horse does not eat cucumber salad». I thought this was more interesting than a mere «Hello World!».

​Welcome to my blog about statistics, bioinformatics and personalized medicine (PM). I will share insights and ideas from my work as head of the PM-ICT Unit within the ETH Technology Platform NEXUS Personalized Health Technologies​. 

We have just started and it's an interesting time - hope to keep you tuned soon