Carragee Consulting

Genetic testing – useful or not?

In 2020 I got results of a genetic test that said “Overall lifetime cancer risks have been reported as high as 73% for males and nearly 100% for females.”

I had a newborn and the world was facing the biggest public health crisis since World War I. I was naturally completely overwhelmed.

The genetic test explained a pattern of disease in my family history but didn’t provide any suggestion for how to change my fate.

I tried to set up the screening appointments I needed to catch cancer early, but the medical systems and health insurance I had the next few years keep looping me in to talk to geneticists, rather than getting me on a protocol for early detection.

The only active step I really took after I got the test results was to cut off my long hair and save it so that when the time came I could have a wig made from my own hair.

I actually did this twice, so I have almost 200 grams of long brown hair in a bag that I never had made into a wig.

I think that all data scientists should you know the myth of Cassandra, who received the gift of prophecy, but was cursed so that no one would believe her predictions.

As data scientists, our job is not just to make predictions — you will get cancer — but also to help people come to terms with what to do about them.

The other reaction I had to this prophecy was to take my old employer up on the offer to be a business analyst again and work for regular W2 wages. I wanted the corporate health insurance, short term disability package and at least some life-insurance.

The shock of the genetic test results wore off kind of quickly and I re-quit that job before I actually got sick, so by the time I was diagnosed I actually didn’t have any of the benefits I had returned to obtain.

When I’m thinking about feature engineering for an ML model I am trying to max out the F1 score, but I’m also trying to categorize inputs based on the degree to which the business can control the values — constantly thinking about the “So what” of the modelling exercise.

Sometimes the answer is to keep doing what you are doing and just admit that its out of your control. The answer is never keep 200 grams of hair in a bag — that’s just creepy