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:

  • Where did you hear about Genomes Unzipped?
  • What genetic tests (if any) have you had done?
  • How much would you pay to get your genome sequenced?
  • Would you consider donating your genetic data to the Genomes Unzipped project (and if so, under what conditions)?
  • How much regulation do you think the genetic testing industry needs?
  • What topics would you like us to cover as the project moves forward?

Naturally, we’ll be putting some additional effort into deciding exactly how to phrase these questions and what options should be available for each of them; if you have any thoughts, let us know in the comments.

Any other ideas for questions?

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21 Responses to “What questions should we ask in our reader survey?”

  • Hi – good idea

    Have you experienced, or do you know someone who has, any benefit or harm from a genetic test and if so what are the details?

    Do you think that newborn babies should have a full genome scan once it becomes available and affordable?

  • A few more suggestions:

    1) What are your reasons for taking a genetic test, eg, health, deep ancestry, family history research, curiosity?

    2) If you have not taken a genetic test what are you reasons for abstaining?

    3) Do you think that DTC genetic testing should be permitted for children and if so under what circumstances?

    It might also be interesting to ask for details of country of residence to see if attitudes to testing vary from one country to another.

  • From the “help me do my job” category:

    * What public misconceptions about genetics are most concerning to you? How do you think these misconceptions can/should be corrected?

    This is essentially the question that almost caused a fistfight at GET, so play nice.

  • Great suggestions, thanks all. A few more of my own:

    1) Do you consider yourself to be not at all / somewhat / very knowledgeable about genetics / personal genomics technologies?

    2) Are you interested in learning more about genetics science / products / ethical, legal, social issues?

    3) What is the most useful aspect of GNZ for you? The least?

    – Dan

  • For lay people: Where and how have you learnt the most about developments in the field of human genetics?

    For anyone: If you have discussed your DTC results with your doctor, how did they react?

  • James Larry Vick

    If you have had a DNA test, what company or companies (or foundations) have you used and what were the tests?

  • That will be interesting!

    Maybe along with

    Would you consider donating your genetic data to the Genomes Unzipped project (and if so, under what conditions)

    a question about the status: single, in couple (married or not), children (already or wanted); etc. Seems that these influence a lot the way people plan to release their data.

  • David Schleisnger

    I’ve had my 23andMe profile for a few months and I love it, however I have a concern that the novelty of DTC genetic testing will eventually wear off or plateau rather quickly. I’m not sure that your average person would pay to obtain their genetic information outside a doctor’s office.

    Two additional questions:

    Do you think the DTC genetic testing business models are viable?

    Do you see a future for DTC genetic testing?

  • I’ve been tested via 23andme and from my own experience and discussions in the community there is frustration on the ancestry side of the house regarding making connections with matches.

    Obviously, some who have been tested only have an interest in the genetic health information and not genealogy.

    But it is common for people in the community to have profiles with surnames and other info, thus indicating an interest in genealogy, yet they do not respond to invitations to share basic genome information or to discuss the where the connection lies.

    In fact, my own 4 closest “Relative Finder” matches by far (possible 4rd to 4th cousins) have not responded to my invitations.)

    I assume the silent cousins do not think they will be asked for a kidney or college tuition, so I’d love to know what other reasons why they might not respond.

    A possible more focused question for those who are interested in ancestry:

    * What are your expectations when using your genetic results for ancestry research?

    A follow up might be:

    * What would preclude you from sharing or communicating with others that you match genetically?

  • What is the ‘worse case scenario’ that you could imagine happening as a consequence of publicly posting a person’s genetic sequence online?

  • Daniel MacArthur

    Thanks guys, keep ’em coming.

    I realise we already have too many questions to fit into a single survey (blog reader attention spans being what they are) – so we may end up spinning some of these questions off into other surveys down the track.

    JJT: a very interesting question, and certainly a major source of frustration for our genealogist friends. However, never underestimate the power of laziness and apathy as an explanation for online behaviour – and the people who are too lazy to respond to your contact request may well also be too lazy to fill in our survey. :-)

  • If you’d prefer not to make your genome data or sequence public, are you willing to contribute your data and participate in (anonymized) scientific studies? Why or why not?

    What sources do you value for news or education about DTC genetics? (popular press, technical blogs/industry mags, scientific journals, friends/family, government, companies themselves, etc)

    What matters (or mattered) more to you in deciding whether to purchase a DTC test and which one to purchase if you decided to do so? (price, privacy, features, size of customer base, company reputation, altruistic potential, recommendations from others, etc)

  • Have you considered the impact on your family members of having your personal genomic information available?

  • Do you think that genetic counselling should be compulsory? If so, do you rely only on physicians or would you speak with someone who is generically an expert in the field?

  • Will FitzHugh

    Have you ever used SNPedia? Have you ever contributed to SNPedia?

    Are you a member of the PGP-1000 (Personal Genome Project)?

  • Which single trait would you most like to unzip?

  • What projects have you previously donated your Raw Data to?

    What ethnicity are you?

    Do you suffer from a known genetic/partly inherited illness?

    Have you notified family members that you intend to share your data?

  • Betsy Alberty

    Do you have access to a complete family history?

    If you have access to your family history, what weight would you give your genome sequence when compared with your family history (FH)? a) About the same b) more than FH c) less than FH

    Have you ever been denied insurance because of a pre-existing condition; if so, would you be willing to share this information anonymously?

    Do you think insurance companies, especially for-profit companies, should have access to any portion of your genome sequence?

    On a scale of 1 to 10, one being the least amount of knowledge, what is your perception of Congress’ understanding of genetic testing issues?

    How many years do you expect it will take before routine genetic testing is a clinical reality? Please give information in genetic condition: years format.

  • Teddy Devereux

    Did you find out any potential health risk from your DNA test that you were glad to know, in terms of being aware for the future or altering lifestyle? For example, risk of a blood clot or carrier of disease allele.

  • What information should be provided to the consumer, and how is that information ‘vetted’ to provide optimal utility without direct genetic counseling to avoid (potentially incorrect and damaging) impact?

  • Daniel MacArthur

    Thanks so much to everyone for their suggestions. We only managed to fit a fraction of them into the first survey, but we’re planning to roll out a series of more targeted surveys over the next six months or so – seems to me the next one should be more focused on issues around regulation (an area that requires substantial nuance in designing questions).

    Please do complete the survey when you have five minutes to spare! We’d like to hear from as many of our readers as possible.

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