A Story of Privacy During the Pandemic

On February 27th we started something here at TripleBlind. After a conversation with Ramesh Raskar of MIT about an idea that struck him when Mike Pence’s team arrived at a healthcare conference asking for ideas of how to battle Coronavirus, we began building a contact tracing solution. (Even though we and nobody outside of certain specialists knew the term “contact tracing” back then.) This became the open source cellphone app known as Private Kit, which spawned the community behind the COVID Safe Paths app and the Safe Places system.

This system is good. It is it going to help stop the spread, it will #flattenthecurve. Even more importantly, I believe this is how we restart the world. I think having 14 days of “all green dots” is going to be the key to leaving our homes, opening our schools, rejoining our colleagues and feeling safe around strangers again.

But most importantly, this is Private.

Why is private important? It is an important sounding word, but is it really italics-worthy important? I mean, really, isn’t fighting the disease that is paralyzing the entire world more important? Can’t we forget Private for now? Let me tell you a story…

Several years ago there was a wildly contagious disease known as MERS (Middle East Respiratory Syndrome). It hit South Korea hard. Hard enough that people were scared and privacy was the last thing they cared about. A bill passed to help authorities perform contact tracing. To make it more efficient they were authorized to collect video, credit card and everyone’s cell phone location. The days preceding a patient’s diagnosis were almost perfectly reconstructed and published so the community could tell if they’d made contact with these people. It worked and MERS was stopped. So…that’s a good thing, right?

Here is the next chapter of that story. Recently, patient #15 with COVID-19 in a district of South Korea was broadcast — texted to the cellphones of everyone in a certain neighborhood. This text included a link to some facts. A female in her 20s working at Jacks Bar had been diagnosed. The trail of her last few days was published so people could tell if they’d had made contact with her. This was for the public good, a little loss of privacy is worth it — right?

Then the worst tendencies of scared people took over. The trail was examined…scrutinized by an online crowd. She’d gone home sick on March 27th. She went to eat at a restaurant on March 30th. She waited until April 3rd to go to the hospital. She even stayed with someone one night. How irresponsible! What a self-centered youth! And what about that person she’d stayed with? It was “anonymous” data, no names were ever published. But how many 20 year olds work at Jacks Bar? And how many of them live in that specific neighborhood?

People are storytellers. Points of data get connected and stories just naturally emerge. It is human nature.

Here is another version of that same story: A 20 something young woman starts to feel sick in the middle of a terrifying epidemic. ¹She leaves work early. Scared. Afraid she’s sick. Afraid she’ll lose her job. Afraid she won’t be able to pay her bills. After hiding for two days she is too weak to cook, but starving. She goes to get some food, hoping it will hold her over until it passes. She finally feels scared for her life and goes to the hospital to learn she is the victim of the virus. She was lucky and recovered. But this victim will forever be branded as the girl who jeopardized her neighbors. She’ll always be blamed for anyone who got sick, whether she actually came near them or not. The disease is gone, but she may never recover.

I’m not certain if my story is completely true. But it is why Private matters. Surveillance by a trustworthy official is easy to allow. Privacy is hard. But is it possible. And she deserved it. So does my daughter. So does my son. So do you.

This is why I care. This is why I’ve worked 18 hours a day, every single day for nearly two months. This is why TripleBlind exists.

#Covid19 #FlattenTheCurve #PrivacyMatters

 

partially inspired by segment at 7:40 of “The Coronavirus Guilt Trip