Archive for the 'Admin' Category

Reader survey results: digging a little deeper

Thanks again to the more than 250 of you who completed our reader survey a couple of weeks ago. We reported the basic demographics of readers in a post last week, and promised you some more detailed analysis this week – particularly of the two questions where we gave people the option of adding their own thoughts as free text.

There’s no way we can present every nugget of interesting information emerging from the survey, but we thought it was worth digging into a few of the more obvious or unexpected features of the data. Firstly, a little additional analysis of the more quantitative data emerging from the survey.
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Reader survey results

Thanks to everyone who participated in last week’s reader survey, which is now closed. We received 252 responses (excluding Genomes Unzipped members), which is fantastic. I’ve made an anonymised version of the results (with names, email addresses and all free-text fields removed) available here.

We’ll be breaking down the data over the next week or so, but I wanted to draw attention to some of the more interesting immediate findings here. Please bear in mind that this was not a scientific survey, and the respondents are a wildly biased sample from the general population, so the results are absolutely not representative of the broader population.
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The first Genomes Unzipped reader survey

The survey is now closed – we’ll be reporting the results soon.

Welcome to the first ever Genomes Unzipped reader survey: we would be very grateful if as many of our readers as possible fill this out. We’ve got a set of demographic questions, some questions about your own experience with personal genetics, and a few questions about controversial topics. As well as it being generally interesting to know who our readers are, and what their views and experience are, the results of this survey will also ensure that we can write posts that are interesting and relevant to as many of our readers as possible. It should take around 5-10 minutes to complete.

Thank you to everyone who suggested questions for the survey; we’ve included some of the suggestions, though there were many more interesting questions that we didn’t have space for. If the response to this survey is good, we will consider doing more detailed reader surveys in the future (for instance, a “GNZ Readers’ Opinions on Regulation” survey).

What questions should we ask in our reader survey?

Genomes Unzipped is a young project, and we’re still getting the hang of this whole group blogging game. One thing we’d like to understand more about is you, our readers: how did you find us, why are you reading, and what would you like to hear more about as the project moves forward?

We’re thus currently putting together the inaugural Genomes Unzipped Reader Survey. However, we don’t want this to be just an exercise in collecting demographics – we’d also like to seize the opportunity to ask more interesting questions about your views on the broader issues around personal genomics, genetic genealogy, genetic privacy, and the future of personalised medicine.

We also want to ask questions that interest you. So here’s your chance to get involved: propose a question in the comments section, and if we like it we’ll be including it in the reader survey later this week.

Here’s what we currently have on the Genomes Unzipped virtual whiteboard, in addition to the standard demographic questions:

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Our genomes, unzipped

When we launched this website back in June, I welcomed readers with a promise that Genomes Unzipped would “ultimately be much more than just a group blog”. Indeed, the last four months of blogging have really just been a prelude of sorts to what comes next: the real Genomes Unzipped.

Today we’re launching an exciting new phase of the project. Although we’re not entirely sure where this journey will take us, we’re looking forward to finding out – and to bringing you along with us.

What are we doing?

Over the last year, all the members of Genomes Unzipped have had genome scans performed by personal genomics company 23andMe; several of us have also had additional tests done by other genetic testing companies (Counsyl, deCODEme). From today, we’ll be making all of our raw genetic data and the reports generated from these tests freely available online. As the project proceeds, we aim to obtain data from an ever larger array of tests – ultimately extending to whole-genome sequencing – and release it openly. Right now you can freely download the 23andMe data from everyone in the project from this website.

Over the next few weeks, each of the members will be writing about their own experiences with genetic testing, and what they’ve learnt from their own genetic data. We’ll be discussing analyses we’ve performed on our own raw data, using software written both by group members and other collaborators; and we’ll be releasing the code for that software in our new code repository. We’ll also be talking about the process of deciding to release our genetic data publicly, and how we discussed this decision with our families.

To make it easier for us (and you) to explore our genomes, we have assembled a custom genome browser using JBrowse – this provides a visual interface that allows our 23andMe (and later, complete sequence) data to be viewed in the context of genes and other features. It’s still in prototype form, but we’ll be refining it and adding more data as the project proceeds.

Why are we doing this?

When I first started thinking about a new group blog back in late 2009, the idea was fairly simple: put together a group of people who were experts in fields related to personal genomics, help them get access to their own genetic data, and create a platform for them to talk about what they found. I quickly joined forces with Luke and we refined the idea further.

As we discussed the notion of a group of experts analysing their own genomes, one thing rapidly became clear: for maximum public benefit the analyses had to be open and reproducible, and that meant making the underlying data public. In other words, for this to work, members of the group had to be ready to spill their genetic secrets to the world.

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Some Website Information

Hello all,

We hope you’ve enjoyed the first week of posts on Genomes Unzipped. We thought we would fill you in with a bit more information about the website, and what it has to offer.

Following GNZ

If you want to keep up-to-date with new posts, you can subscribe to the RSS feed. For information on new posts and other GNZ-related news, you can follow our Twitter feed @GenomesUnzipped. If you are interested in following the discussions that go on in the comments you can do so using the comments feed.

Finally, many of the GNZ authors write content elsewhere on the web, on their own blogs or on other collaborative websites. If you are still hungry for GNZ content, you can follow these authors’ posts by keeping an eye on the “Authors Elsewhere” box on the sidebar, or subscribing to the Authors Elsewhere RSS feed.

Personal Genomics Resources

We’ve put together a small list of personal genomics resources; websites that we find useful while investigating personal genetics.

We need your help in expanding this page; please leave a comment if there are any websites that you find useful for information, software or discussion about personal genomics, and would like to share with others. We’re also interested in the flip side; what resources would you like to use, but haven’t been able to find, or don’t think exist?

The Website Itself

This website is running a reserved instance on Amazon EC2; this is currently somewhat overkill for what is so far a simple blog, but it gives us the ability to expand out into other directions in the future.

The website costs are being covered by a generous grant from the PHG Foundation, a not-for-profit organisation that provides information and consultation on the public health, legal, ethical and political issues surrounding genomic technology.

Welcome to Genomes Unzipped

Welcome to Genomes Unzipped, a new group blog bringing together experts in the scientific, legal, ethical and commercial aspects of genetics. Our goal is to provide you with independent analysis of advances in the field of genetics, with a particular focus on implications for the budding industry of personal genomics. We’ll also be discussing ways in which you can make the most of your own genetic data using online resources and techniques developed by researchers.

Some of us you might have seen around the genetics blogosphere: Genetic Future‘s Daniel MacArthur, Genomics Law Report‘s Dan Vorhaus, Luke Jostins from Genetic Inference, Caroline Wright from the PHG Foundation, and Jan Aerts of Saaien Tist. Others are new to the blogosphere, but are experts in the science behind personal genomics, including researchers from the Wellcome Trust Sanger Institute and University College London. All of us share an interest in the future of genomics and communicating genetics to a broader audience. We’ll be adding some more names to the list over the next few weeks, so stay tuned.
What can you expect to see from Genomes Unzipped? Posts here will fall into a number of major categories:
  • Background: Posts summarising fundamental concepts in genetics or genomics.
  • Journal Club: Analysis of important new studies published in genetics, summarising their implications for personal genomics.
  • Opinion: In which we provide our own views on matters ethical or philosophical.
  • Technology: Updates on the latest developments in genetic technologies, especially the rapidly advancing field of sequencing.
  • Products: Reviews and critiques of personal genomic products.
  • DIY: Guides to doing your own analysis on personal genomic data.
  • In The News: The good and the bad from mainstream media reports on genetics, with righteous scorn poured on the bad.
  • Guest Posts: Guest writing from other experts in the field.
  • Interviews: Questions posed to leaders in the field.
The more perceptive among you will have noticed the bright red BETA on the blog header above. That’s because we plan for Genomes Unzipped to ultimately be much more than just a group blog – but we’ll have a major announcement soon laying out exactly what that means.
For the moment, though, you can just sit back and enjoy the genomics goodness.

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