semeiotica
evolutionary design ecology

23andme, personalized genetics, and information design

“Genetics Just Got Personal” is the new tagline for 23andme, a new start-up that aims to take people’s saliva samples, genotype them, and make their genetic “plot points” accessible and searchable. Individuals can compare their single-nucleotide polymorphisms (SNPs) to identify ancestral locations, compare them with celebrities, and see what diseases are associated with these SNPs. If an entire family submits their samples for testing, each of them can compare themselves to each of their family members. In 23andme’s letter to the medical community, they state that “the information [23andme service] provides is tailored to genotypes, not to individuals”.

It’s surprising then, given the history of genetics, that 23andme decided to use the “Genetics Just Got Personal” tagline. When someone says that something just got personal, it usually points to conflict, and that a specific individual, rather than a group, stands to loose as a result. Likewise, when someone says it’s not personal, it often refers to some effect that has had an asymmetrical effect on an individual even though it was not directly intended for them. The 23andme tagline sounds like something Arnold Shartzeneggar would say. It does sound tough and too the point, but it also raises suspicions about what getting personal means. Does this mean that my SNPs, which were previously unknown to me, will enter the forefront of my individual decision-making and social interactions? Will it become a part of the design ecology that other will consider when making medicines, devices, or services?

If genetic information does enter our everyday decision-making processes, a central concern is how that information is conveyed and how the information design biases or constrains the decisions we make. Given that 23andme is providing incomplete information, should I make a health decision based on what’s available? I don’t think they’re advocating that anyone make health or reproductive decisions based on the information they provide. They do, after all, provide suggestions for a range of resources (including genetic counseling) for contextualizing the costs and benefits of these kinds of decisions.

Still, I’m left with questions about how the visual design of bioinformatic resources like 23andme creates and constrains different ways of thinking about and engaging with the information.

23andme’s stated goals include advancing research and being world’s most trusted source of genetic information. Can we imaging any scenarios where these goals would come into conflict?

Given that the value of the resource increases with each additional genotype, are those that contribute to the resource entitled to any of the database’s value over time?

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