I'm 2.8% Neanderthal - The Beginning of Genetic Exhibitionism?
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
- Risks of developing a condition: expressed as percentage. For example, users may learn that
(e.g.) they have a 23% risk of developing diabetes
Ethnic description: users can learn their ethnic composition. For example, that they are 78% Scandinavian, 0.3$ sub-Saharan, 2.3% Neanderthal, etc. It is important to note that this data
also relates to health results. Scientific evidence shows that conditions are correlated with
ethnic background. For example African people have more propensity for developing prostate cancer.
Among the obvious risks of disclosure of genetic data are:
- Insurance companies might take advantage of the data. And introduce premiums for a health-care
plan in case a potentially costly-scenario is likely
- In general, Genetic discrimination
- The risks are of course shared among the user's relatives. DNA is heritable so if a brother
discloses his data, it relates not only to himself, but also his brother, parents, his children, etc.
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:
- We found tweets disclosing genetic tests results, both for risks of developing a condition
and ethnic descriptions
- Analysis shows that users are more comfortable with disclosing ethnic description results, than
risks of developing conditions
- In case of disclosing users, we found that identifying information was present in their
Twitter profiles. This allows the linking of results to individuals (and their families).
- A number of Twitter users even posted full screen dumps with results obtained from 23andMe
Below we include examples of screen dumps users decided to post online:
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)