Almost a week ago I opened this blog for discussion of personal genomics and I promised to share my personal genome profile. I am in beta testing phase, trying to improve the format of my startup blog site. I am also grooming my philosophy about this new social genomics forum by talking to very beginners in genomics through leading professionals in the science and business of genomics all over the spectrum. So what is the ethical issue about personal genomics? So what is the privacy issue of personal genomics? I have my own opinion that will come through my blog. I am a DNA sequencing professional, a scientist who believes genomics should be personal. All the other zillion questions are open for discussion. Regarding my own sequence: I was planning to bring my personal SNP sequence database online, it would look like this:
# rsid chromosome position genotype
rs4477212 1 82154 AA
rs3094315 1 752566 AA
rs3131972 1 752721 GG
…and so on 1 million lines like these.
Well, it would be a symbolic gesture, because this information is boring this way, even I don’t read this as it is. This level of data is for bioinformatics professional, who I am not. The analysis of my genetic profile was done by the testing company in a very professional and in the same time totally user friendly way. We live in a free open global society, some people publish their own genomic sequence in full details, every 3 billion letters written down in the public domain. Some people are afraid to publish any personal data, even like a photo of themselves. I actually know people who are so shy they don’t even have a FaceBook profile, can you believe this??!! This is absolutely OK, we respect either end of the spectrum and as a matter of fact, everything in between. When I signed up for genetic testing, I gave fully informed consent to use my data for research. My purpose to obtain my genomic SNP sequence profile from two independent companies several months ago was first I wanted to know my own genetic destiny and second I wanted to generate the foundation of my personal genomics blog to open a social discussion about our own personal genome. Including every risky aspect of it. My plan was to put my 1 million or so SNP sequences on the internet. Well, as I said it is kind of boring. Instead, I decided to deposit my data into a bank account, you hear me, a bank account, more, it is a Swiss Bank Account, it is called Healthbank. Don’t you want to put your money into a Swiss Bank Account? I want! So first to those close to half a million people who already have some kind of own genomic sequence data, please, don’t keep them under the mattress. Put them into a Swiss Health Bank Account. To those who about to get their genomic profile done, be assured, you can keep it safe. And always consent to use it for research purpose in a confidential matter. Like you consent your portfolio manager of your retirement account to invest your money.
About my promise to share my personal genomic profile with you is still valid. Even if I won’t publish each SNP variation of it, I will certainly tell you the interesting conclusions that can be drawn from the crude data as of today. If we increase the database, we talk about it everywhere, yes, even my blog included, we will help the bioinformatics people to be able to learn more in order to deeper interpret our data. Tomorrow, in the not so distant future we will be able to understand more and more what those DNA sequence letters mean.
In the meantime, just read my blog. If somebody has difficulties to understand it, the glossary part tries to explain some genomic terms in simple English. Please, give me your feedback, ask questions, this blog is for everybody, not just for the few genetics professionals. This project is about personal genomics goes into the social networking. We are a small community, as I said there are less than half a million people out there who tested their genetic profile not because they were sick but because they were interested what secret their genes try to tell them. However, this number of genomic enthusiasts will grow and my personal genomics blog forum is here for them to talk about their personal genomic experience. The most important fact is, that my genomic sequence result is very personal, literally my genetic profile is not an abstract scientific information and when I share my genetic result through my personal experiences in my life, that is real. Hopefully people will find me and they are going to share their genomics experience also. More, I will motivate people to get tested, so I would contribute to the growth of the genomic enthusiasts network. This is fun, at this level it is entertaining, but also it could be beneficial to your life if you make lifestyle changes based on your genetic destiny and you will have driver position in your life. Finally, science will gain also, because as I said there are a lot of uncharted territories in the field of genomics. So, for start, please read the book, the EpiGeneBook!
Plus, be interactive, give me your favorite gene or trait, read the widget on the right hand side. Ah, yes, and are you a little bit of Neanderthal? We are all, almost all carrying a few percentage of the Neanderthal DNA sequence. Don’t be afraid, Neanderthal people were not that stupid you think, well, kind a ugly though, I agree. But certainly not aggressive creatures, we, modern humans ultimately won the struggle of survival, certainly we are the stronger ones, I guess more aggressive than the Neanderthal people were. So don’t be ashamed of your gentle side of being a little bit of Neanderthal. I am 3% gentle, ugly creature.
Tibor Gyuris
Personal Genomics Blogger
2013. September 22
“Knowledge is always good and certainly always better than ignorance.”–Sergey Brin
“Possideo genes ergo sum”—Anonymous Roman Philosopher
….stay tuned for personal interpretation of some Tibor’s real SNP data….
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