Lately I’ve been reading, discussing, and thinking about the concept of “participation.” It’s an idea that gets thrown around a lot but without too much examination or critique. Specifically, I am researching theories and frameworks of “participation” as it relates to my dissertation. The question I’m asking is: does giving people access to their own Read More…
Author: sarahcn
I’m sorry, is that too personal?
Imagine a stranger approaches you on the street and demands to either (1) take a sample of your spit so they can sequence your DNA or (2) plug a device into your smartphone that will transfer over to them your last month of sleep and activity data. Which are you more likely to hand over? Read More…
Regulation
Poor Little Bill Regulation is getting a pretty bad rap these days. At the end of January, the Trump Administration announced that for every new federal regulation, two existing regulations should be eliminated (see here and here). Putting aside the immediate questions of logic and logistics of this order, the implication is that regulations are to Read More…
Getting paid for your DNA
There’s a new genetic sequencing company that wants you to get paid for donating your DNA data to science. Launched in December, Genos’s service costs around $500 and gives customers the ~3% of their genome sequence that codes for proteins, the “exome.” Additionally, Genos’s platform allows users to share their exome data with (academic and Read More…
“If I build it, I will come”
For my dissertation, I have been interviewing developers of third-party interpretation tools for consumer genomic data. These are tools such as Promethease, openSNP, and DNA.land, among many others, where people who have their genetic data file from consumer testing can seek further analysis and/or contribute their genome to research. Even though I’m only a few interviews Read More…
Do We Exist Outside of Our Data Flows?
In the opening scenes of Peter Pan, Peter has been separated from his shadow, and he breaks into the Darlings’ house in his efforts to get it back. Wendy is awoken by the sound of the chase and finds Peter, having gotten hold of his shadow, trying to reattach it with a bar of soap. Read More…
Is Genomics in a Bubble?
There has been a lot of election “post-mortem” talk about living in bubbles. Urban bubbles, academic elite bubbles, blue state bubbles — all out of touch with and perhaps at times dismissive of rural America, no college degree America, red state America. [For a concise articulation of the problem, see November 8th New York Times Read More…
Thoughts on Translation
I recently spent 12 days vacationing in Italy with my mother and two older sisters. While my body is still processing large quantities of delicious cheeses, pasta, and gelato, my mind is digesting the experience of touring a foreign country with different norms, cultural nuances, and of course — a different language (though the diversity Read More…
Mapping Metaphor across Big Data, Biotechnology, and Genome Sequencing
Everyday metaphors Before I was geeky about science I was geeky about words. For my 16th birthday, my best friend gave me the “Encyclopedia of Etymology” — a giant tome about the origins of words (not bugs, people! That’s entomology). So of course I get excited when science and language interact, which happens a lot Read More…
The Contradictions of Consumer Genomics
Through numerous conversations I’ve had with scientists, ethicists, and health care providers over the past few years, I’ve picked up on an odd and seemingly contradictory view of consumer genomic testing: it is both meaningless and dangerous. Not to paint a picture of complete professional consensus, as there is none, but from what I hear Read More…