First Results of the Survey on Sharing Genetic Information

General Information

We have finally taken the time to analyze some of the results of the survey on sharing genetic information we did before we started working on openSNP.

Some general information: Overall 229 people participated in this survey. About 25% of participants gave their chromosomal sex as XX, 74% as XY and there are no differences in terms of usage of DTC-companies between those groups. The mean age of the participants is ~33, the youngest being 15, the oldest being 70. Over 80% of participants gave their ethnicity as caucasian.

Nearly 40% of all participants have already used a DTC-company to get themselves genotyped, further 30% plan to do so while 30% don’t plan to get genotyped. This high amount of participants that got themselves genotyped seems to be the result of the ways we spread the survey: We posted it at the 23andMe-community, sent it to the DIYBio-mailing list and some bloggers out of the fields of genetics/personal genomics also wrote posts on the survey (again: Thanks a lot for your support). We also spread the survey using Twitter, Facebook and Google+. We chose this approach as our goal was not to survey a representative sample, but to assess the demand for a service like openSNP.

68% of all participants said they would agree to share data with their DTC-company, no matter if it shared the data with others, 26% would agree to share, given that the company didn’t distribute the data to others and about 7% were not willing to share at all. No real surprise here: Those who have already been genotyped or are planning to get genotyped are more willing to share than those who don’t plan to. It would be interesting to know if people don’t want to get genotyped because they don’t want to share their data with a company (e.g. Don’t trust DTC-companies).

General reasons (not) to share

My girlfriend says I'm not allowed to display the mean of scaled answers, but then again, she also objects to the bars having shadows, so I wouldn't listen to her.

We also asked a few questions on why people would or wouldn’t share their data with others. Each question could be answered by making a selection on a five point scale, ranging from 1 (strongly disagree) to 5 (strongly agree). There are quite large differences in reasons why people would like to share. The most agreed upon answer is to help scientists with their work (mean = 4.53, median = 5), followed by personal benefits (mean = 3.64, median = 4) and curiosity (mean = 3.5, median = 4). Over half of all people strongly disagree with personalized advertising as a motivation for sharing data (mean = 1,72, median = 1).

There is less diversity in reasons not to publish the results, although the median of “fear of discrimination” and targeted advertising show that over half of all participants at least agree on those questions (medians = 4), while the medians of the questions about consequences for closely related and privacy breaches are in general more neutral (medians = 3).

Differences between customers/non-customers?

We also used an ANOVA and Tukey’s range test to see if there are any differences in agreeing/disagreeing on those questions between survey participants who have already gotten genotyped, those who plan to get genotyped and those who don’t plan to get genotyped. On the topics why people would share their data we found significant differences for the questions regarding helping scientists, having personal benefits and curiosity. Participants who have already gotten genotyped do agree more on those questions, compared to those who don’t plan to get genotyped. For out of curiosity and to help scientists this is even true for comparing the don’t plan to-group to the plan to-group, with the latter one agreeing more.

Regarding reasons not to share genetical information we find similar results: Those who don’t plan to get genotyped agree significantly more on all four questions, compared to those who have gotten themselves genotyped.

Summary (tl;dr)

Although there are no big surprises in those statistics, it is great to get some results regarding our own guesses:

  • People who are already customers of Direct-To-Consumer testing companies (or at least plan on becoming a customer) are more likely to share their data with the company, even if the company allows others to use the data.
  • Customers of DTC testing companies do agree more on questions regarding reasons to share genetical information than those participants who don’t plan to become customers.
  • Those who don’t plan to get genotyped do agree more on topics regarding reasons not to share their data than those who are already genotyped.

It seems that participants who (plan to) get genotyped are feeling more optimistic about the benefits of sharing their data with the DTC company as well as the public and see less problems in possible reasons not to share their data with others, compared to those who don’t plan to get themselves genotyped. And the same seems true vice versa, of course: those who do not plan to get themselves genotyped will agree more to questions concerning the risks of sharing, while scoring lower on questions concerning the possible benefits of doing so.

It’s too bad that we can’t find out (given the current survey) if this is more than correlation. Do people feel more optimistic and lose some of their fears about sharing their data, after they’ve gotten genotyped? Or do they get themselves genotyped because they feel more optimistic about it in the first place (which seems more likely to me)?

We will explore the data set a bit more in the future. Do you have ideas what things we should take a look at?

One thought on “First Results of the Survey on Sharing Genetic Information

  1. […] youngest being 15, the oldest being 70. Over 80% of participants gave their ethnicity as caucasian. Full post is here. This entry was posted in gene testing, genomics and tagged OpenSNP by PersGen. Bookmark the […]

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