A while ago I came across 23andme. This is a service that will look at your DNA and show you what information can be found from it. For me this seemed interesting because it went alongside the idea that we share a lot of information about ourselves – a lot more than we might have been comfortable with a while ago – and it is interesting to think about what we share and what the implications of sharing are. This connects for me with writing on blogs and posing on facebook and I am really not sure what is shareable and what isn’t.
As well as the public/private issues, it is also interesting to me to see what information is out there and how easily genetic information can be interpreted. So I went ahead and sent in my spit. So now I have the results.
I am impressed at the sheer amount of information that is there, with long lists of health and ancestry data. There is also a lot of supporting small print. I think some of this will be useful for classes for a few reasons:
- To show what information is stored in DNA and discuss the relationship between genotype and phenotype.
- To show heritability
- To discuss the ethics of collecting and storing this kind of information by third parties – how could this information be used in a wrong way.
- To discuss evidence for claims.
At the same time the results came in, the company made the news as the FDA issued this letter stopping the company from promotional work. This is kind of neat since it suggests that there is an ambiguity about what is right and the company have a different view of their responsibility to the consumer than the FDA has. The FDA are concerned that people will make inappropriate health decisions based on the data and I can understand why. There is a lot of small print and clauses full of conditional language and it really does take an expert to read this.
The CEO replied with a letter that was a masterpiece in the stretching of language.
23andMe has been working with the FDA to navigate the correct regulatory path for direct-to-consumer genetic tests. This is new territory, not just for 23andMe, but for the FDA as well. The FDA is an important partner for 23andMe and we will be working hard to move forward with them.
This is a story to follow. I am looking forward to some interesting conversations with colleagues and students around this data.
My worry is that, in sharing this data (even the screenshots in this post) I contribute to moving to a situation where not sharing becomes synonymous with having something to hide. There is a right to privacy and we should not assume that people who do not share are hiding something.