Genetic media – about social media & DNA.LAND 1


Social media is generating information about tons of individuals on this planet. A plethora of data including birth date, place of residence, likes & dislikes and much more is floating through the net. When you think of the wealth of digital information, it raises the question: Can’t we use it for a good cause?
The good cause in this case would be science. However, blindly donating your information, maybe even your genetic make-up, for glorious science to save the world might also be an overly romanticised approach.

In this blog post I would like to introduce you to digital-era geneticist Yaniv Erlich, a man who uses social media data for his research but at the same time challenges the security aspect of this sensitive information.

Crowdsourcing genetic data?

An important source to pinpoint links between genetic variations, differences in the DNA code between people, and traits (body weight, disease, …), are large genomic data sets. Dreamland of a human geneticist is  a person’s DNA and a catalogue of his/her attributes. But one record is not enough. To establish a meaningful correlation between sequence variations and traits, it needs hundreds to thousands of individual genome sequences. In recent years, it is especially trendy to get to know your very own genome. More and more people leave their biological material with companies like 23andme to learn about their disease probabilities and family tree. So why not linking available genome data with information on the web (fitness level, health parameters, sexual orientation…)? Well, scientists have a bit of an ambivalent relation to social media – it is not “real scientific” data, not carefully collected and thus cannot be used. Maverick and scientist at the Columbia Universitya and New York Genome Center Yaniv Erlich challenged this view last month in his talk “Genetic Media” in Vienna. He and his team used data from a social network where people can share family trees. This gave them access to 86 million public profiles not only for free but instantly. Yaniv Erlich showed in his talk that after computationally “cleaning” these genealogy datasets, the information can be used for tackling scientific questions with an error-rate as low as 2%, similar to supervised medical studies – arguing that social media datasets when carefully used can give similar results compared to classical studies. This puts privately acquired genome information in the spotlight as potential source for scientific studies.

So, we should all donate our genome?

But whom would you give it? To a company? To an academic research institution? Considering that you pass on half of your genome to your children, it can affect your present and future relative’s privacy.

Hacking and evil intentions left aside, the pro for a private company is that you do not need to share your data with everyone. Con: you are not contributing to scientific progress…from which you actually benefiting by interpreting your genetic code. You can also donate your spit aka genetic material to a public research project as for example the 1000 genomes project, where samples are anonymised and the data is publicly available to all researchers.

Your genome data is not secure – ever.

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By using only free, publicly accessible Internet resources it is possible to identify the donor.

What I haven’t told you yet is that Yaniv Erlich has a history of hacking. In 2006 he hacked the security system of an Israeli bank. But this is another story. So it is not surprising that he brought the hacker ethos to biology. Using his software with the catchy name lobSTR, he profiled genetic markers (so called STRs) on the Y chromosome in anonymous genome data sets and then matched it with a public genealogy database called Ysearch. As the Y chromosome as well as surnames get inherited paternally, he and his team could uncover the surname behind donated anonymised DNA sequences. This proof-of -principle security breach showed that something as personal as your DNA cannot be de-identified. It literally is YOU!

Hm, I should not give away my DNA then?

Of course one should, life science depends on volunteering. However, be aware that donating your genetic data is a double-edged sword. And exactly this should be communicated. Not “in our hands it is safe” or “the benefits outweight” – no, the honest answer is that nobody can guarantee that the data is safe even when handled with best intentions. Therefore, Yaniv Erlich suggests that trust is the key and should not be mistreated from either side as historical cases like the story of Henrietta Lacks teaches us.

“The current regulatory framework was developed decades ago and is heavily biased on protecting participants from researchers. One of the cornerstones of these protections is to de-identify information to retain the scientific value of the data without the ability to harm the originator. But science and especially genetics has dramatically has changed. It is impossible to de-identify DNA. Your work {Heather Dewey-Hagborg} showed that nicely – we leave traces everywhere! Therefore, we suggest building a framework that is based on trust rather than wasting time and energy to somehow protect genetic privacy.

We have many good examples of building trust. Look at peer-to-peer economy (e.g. AirBnB, ebay, Uber). Just a few years ago, it would have been totally bizarre to enter the house or car of a total stranger that you find online.  But the combination of a trusted mediator (e.g. AirBnB), compensation mechanisms, a reputation system, and a code of conduct, it is now possible to establish trust in total strangers for defined tasks. We posit that similar trust centric frameworks can be built for genetic information in order to facilitate participation without false promises of genetic privacy.“,

Yaniv Erlich in an interview with former TEDxVienna speaker Heather Dewey-Hagborg.

DNA.LAND

DNA.LAND – contribute your genome to science

To this end Yaniv Erlich and colleagues launched a the non-profit website run by scientists called DNA.LAND, which operates according to a clearly stated trust codex. According to the credo “sharing is caring” they ask people to donate their already sequenced genome for large genetic studies. In return they promise to share new findings on your genomes. The participation is for free.

Yaniv Erlich gave his premiere on the TED stage this month at TEDxDanubia. Watch out for the soon available video! For now I leave you with this:

update:

Picture credits: Pixabay

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About Lisa Landskron

Being a scientist in the field of molecular biology & leading the TEDxVienna Blogger team, Lisa loves to do biochemical as well as digital experiments to create and spread ideas.


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