I summarised some of the key motivations for members of the group in my Unzipped announcement post:
- we want to share the results of scientific analysis of our own genomes, and as proponents of open data access most of us believe that doing good science means releasing complete data for others to investigate;
- we hope that releasing our data publicly will help to guide useful discussions about genetic privacy and the benefits, risks and limitations of genetic information in general;
- many of us believe that the ideal resource for genetic research is large open-access, non-anonymous research databases such as the Personal Genome Project, and that sharing linked genetic and trait information openly with the wider community is a public good - and we hope that our own experiences will encourage others to participate in open research projects;
- we all believe that many of the fears expressed about the dangers of genetic information are exaggerated, and see this project as an opportunity to have a constructive public discussion about the truth behind these fears;
- given the ease with which a dedicated snoop could obtain genetic information surreptitiously (via shed skin, hair or saliva, for instance), some of us argue that the whole notion of genetic privacy is illusory anyway - while releasing our data online makes it easier for people to get hold of it, this is a difference of degree rather than kind.
Great work! But I have 2 questions.
1) Do you have to pay for our downloading through amazon s3?
2) How do we figure out the strand of genotypes? I am not seeing that information through the database query though php (eg: www.genomesunzipped.org/download/genotypes.php?chr=chr11&id=rs490998)
Let me join the chorus of support. Agree that crowd-sourcing genetic data has tons of promise.
On the other hand...a naysayer for the utility of current genomic tests (who could that be??) might argue that a detailed medical and family history with routine labs can tell as much or more about yourself than any SNP array.
Are you going to release "regular" medical data too, or do you think the utility of SNP data would be eclipsed?
1. Yes, we do. Our costs are currently covered by a small grant from the PHG Foundation, but we're actively looking for additional funding to cover expenses as the project ramps up.
2. Good question: our long-term goal is to ensure that everything is mapped to the reference forward strand, but for the moment we should come up with some way of indicating strandedness. I'll look into it.
As you know, medical and family history (like current genetic data) can only tell you part of the story. Most individuals born with recessive Mendelian diseases have no family history of that disease, for instance. We see all of these sources of information as useful; even for many complex diseases (e.g. breast cancer), common variants from SNP scans are just as predictive by themselves as medical and family history combined.
The project will focus on genetic data initially, simply because that's what we know: we don't yet have a clinician on board (although we'll be looking for volunteers). However, we'll also be discussing the areas where genetic predictions have limited utility - this won't just be an exercise in hyping the value of SNP data.
All the SNPs in the GNZ database are mapped against the forward strand.
Be careful when asking for volunteer clinicians - you never know who may turn up!
What I find amazing is the power that the synergy between the globalised communications network and the broad goals of new research at the heart of this endevour. To be able to amass a database of the genetic information of 100,000 people from across the world, available from anywhere is equally amazing as the content of that database.
On a separate note, I am not entirely surprised that support for such a project is larger than anticiapted. If history has shown anything it is that people will put themselves forward for almost anything.
my concern is about the impact (or consent) of publishing your genome and clinical info on your children. Even more when both parents are publishing it. I agree that the fears of publishing genomic information are exagerated, it is just a question that somehow we are publishing also their information.
Great idea - another advantage is that seeing what the raw data looks like may encourage some of us to take the plunge and join a service like 23andme. It is hard to judge from their website what a full dataset looks like and how easy it is to find specific information.
I would like to include my 23 and me data if you want it. I already make it available to students and I recently offered access to my account to the audience at the World Congress of Psychiatric Genetics after listening to some eminent colleagues batting on about the dangers of direct to consumer genomics.
No one took me up on the offer.
I love this site, it's so interesting to see how the genetic world is developing in this area. My friend and I started a forum after he got his genes tested with 23andme, after we had some long discussion about what he was getting into and how we were worried about the larger implications for the rest of society. Its not on the same scale as this project, but it would be great to meet any like minded people who wanted a chat on the subject, genetic testing forum.