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).

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17 Responses to “The first Genomes Unzipped reader survey”


  • Albert Vernon Smith

    Could be my browser/OS, but I only see text of “Loading…” where survey should be.

  • Daniel MacArthur

    Hi Albert,

    My fault I think – is it working now?

  • @Albert

    Yes, technical problem at this end, all sorted out now.

  • Funny experience, after filling in everything and writing too much in the last open box to see “grey”……..& then to read everything is ok. Looking forward to see the results.

  • my screen did go grey, good prediction, i’m not panicking, really…

  • Great survey! I can’t wait to see what you all make of the compiled results.

    Cheers,

    Dan

  • Albert Vernon Smith

    I’d love to answer your survey, and started twice to fill it out. But, I stopped both times because the answers don’t capture enough possibilities, IMHO. As we figure out the value (or lack thereof) of genetic/sequence data, the answers change.

    For example, the true value of personal sequencing is far from established. And that is putting it mildly. If I knew I could get sequenced, and immediately learn a new way to greatly extend my life in high health, I’d probably pay quite a bit. However, if I were to only be able to test some distant genetic relationship with deceased emperors, I’d pay practically nothing for such silliness.

    Similar concerns exist for sequencing of offspring. What is the value? And for data donation, are you thinking raw genotype/sequence data? Or data with some phenotypes attached?

    All these types of questions often leave me wanting a ‘maybe’ or ‘wait and see’ option. Perhaps I’m being too sophisticated in my thinking, but given the extremely dynamic nature of this field, I know it is too early to always give answers with the options given.

  • @Albert Vernon Smith

    Let’s be generous to our hosts, and rather than thinking this is a poorly designed questionnaire by a bunch of folk who wouldn’t recognise social science expertise if they tripped over it, and whose opinions don’t countenance compromise or equivocation, but instead consider this to be a deliberate attempt to get the readers to answer Closed Questions.

    You are being asked for your opinion, now. :-)

    So, for example, I agree with you that the value of personal sequencing is not established, so I wouldn’t bother getting my sequence done even if it was free.

    That is my current opinion.

    However, ask me again next year (which I hope is the intention) and I reserve the right to change my mind.

  • Albert Vernon Smith

    @Neil

    I didn’t mean to imply the questionnaire was poorly designed. I love the questions, and they touch on many provocative issues. Therein lies the rub. Provocative issues don’t lend themselves to multiple choice answers. Much of the phrasing implies looking at things from a perspective including the future (e.g. “plan to..”, “once the technology…”). It is this phrasing which tripped me up.

    Since the post said, “it being generally interesting to know who our readers are”, I should be scored as an expert working in the field, who thinks too much about the subtleties of genetics as we attempt to move our research finding to personalized medicine. I leave it to our hosts to choose answers appropriate with that profile.

  • I think overall it’s done a good job of asking the questions and giving a reasonable choice of answers. Some slight changes re the @Albert Vernon Smith suggestion though could be to rephrase, or give an extra option for: “I don’t plan to ever get my genome sequenced” and “Not under any circumstances”

  • Albert Vernon Smith

    @Keith Grimaldi

    Agree completely. Perhaps I should have skipped the couple of questions which didn’t have an answer I liked and move along. Instead I took the gadfly route.

  • Daniel MacArthur

    Hi Albert, Neil,

    Thanks for your feedback. Obviously the survey wasn’t designed optimally – it’s a pilot project, and we intend to use the results and your feedback to do a better job with the next version. Please feel free to simply ignore the questions where there isn’t a response that reflects your views (this is why all questions are optional).

    We had to draw a line somewhere between giving people complete flexibility in their answers and generating data that could actually be crunched without huge amounts of work. As this is intended as a rough survey of a collection of blog readers rather than a publishable analysis of representative attitudes to DTC testing, we veered towards the easier option.

    Neil – we should talk about this in person some time, preferably over beers.

  • It’s a nice set of questions, whilst at the same time my thoughts ran along the lines of Albert Vernon Smith’s. These issues are complex and interesting, so no closed-answer questions will really satisfy.

    Of course, we can always take our expanded answers and turn them into blog posts (or comments)!

    :-)

  • hi there
    are there plans to make the results of this survey and in fact the raw data itself open source? (minus any confidential info ie names of course). this would be very helpful to me as a social scientist with an interest in this area (see my recent book, ‘debating human genetics’ http://www.routledge.com/books/details/9780415451109/
    (has some reference to open source genomics, just starting to manifest as a social reality when i was writing this).
    -the results of this would be as useful to me as access to your SNPs are for scientists!

    by the way does anyone know of any facebook groups of people who have taken 23 and me tests and been identified as predisposed to specific diseases? or anything similar to this sort of thing?
    best- alex

  • Daniel MacArthur

    Hi Alex,

    Good question – yes, we plan to make the raw data available once we’ve carefully stripped away identifying info. We should have a post announcing the results later this week.

  • Google Chrome – the button Submit doesn’t work as also Google Spreadsheet.

  • Daniel MacArthur

    Hi Vladimir,

    I’m really sorry, the survey is now closed – we’ll be announcing the results soon. I’ve deleted the form to make this clearer to others.

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