Lukasz Olejnik

I'm 2.8% Neanderthal - The Beginning of Genetic Exhibitionism?

Introduction

Direct-to-consumer genetic testing is almost here. Even now users can take advantage of the early services offered by companies such as 23andMe. We are entering an era where it will be very easy obtain access to DNA-related insight.

Genetic data is very sensitive. On the other hand, the easy of availability may result in users posting their results online.

Risks of disclosure

Two types of data are typically provided by DTC genetic testing companies

Among the obvious risks of disclosure of genetic data are:

Observation

Do people disclose their genetic test results? Turns out they do. We performed a study on Twitter and we found out that this is indeed the case. The gist:

Below we include examples of screen dumps users decided to post online:

Conclusion

Evidence of DTC genetic test results being disclosed in social networks shows that some people have no qualms revealing this data. It is unclear if they understand the full risk with disclosing the results. Perhaps DTC companies should introduce more stringent messages aimed at increasing the awareness. The paper is made available under this link.

The results were presented at Workshop on Genome Privacy (in conjunction with PETS'14)

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