Personal Science Week - 250605 WGS Testing
Get a free 30x genome sequence and more
Personal scientists are always interested in better ways to understand ourselves, and few tests offer as much potential insight as whole genome sequencing (WGS). Unlike the SNP-based genotyping offered by companies like 23andMe, WGS reads your entire genetic code — all 3 billion base pairs.
This week we'll look at a rare opportunity to get this expensive test for free, plus some additional readings about the true value of genetic information.
Free WGS Test
The All of Us Research Program is a US-government funded program launched by the Obama Administration back in 2015 to gather health data from one million people. (They’re a little over 700,000 so far) Anyone can sign up and they’ll send you various (free) kits to collect saliva and other samples. I joined several years back and have been sending them biosamples when they ask, though in the past you needed to be near one of their research centers to do the really fun stuff (eg. retinal images)
Well, now they’ve partnered with the genomics population research firm Color to offer participants a 30x whole genome test, which would normally cost many hundreds of dollars. Sign up here.
I don’t know if you must be an active participant in All of Us or not, but when they ask which Organization is sponsoring, say “All of Us Clinical Genetic Testing Program”
If you’re concerned about privacy, beware that the consent form is pretty broad. In particular it doesn’t mention anything about an ability to delete data later if you decide to opt out. I’m not super-concerned—my/your genetic data is already easily available if a bad guy really wants it—but I use a fake birth date and slightly smudge the rest of my personally identifiable information just in case.
Note that this test is available only until August 15, 2025
WGS
Speaking of whole genome sequencing and why the project with Color is so exciting, here is a handy chart from Perplexity showing some of the leading DTC companies offering whole genome sequencing (WGS), along with their most recent pricing and key features:
What is a genetic sample worth?
Like I said, if a bad guy wants my genetic data, he’ll get it, so I’m less worried about genetic privacy than some people. The Genetic Information Nondiscrimination Act (GINA), passed in 2008, prohibits employers or health insurance providers from asking about genetics. Others who might want to know, e.g. your doctor or your life insurance company, generally already ask about family history, which is about the same thing.
Or maybe you think your data is valuable for other reasons, and you dislike some big corporation using your genetic results to make a fortune off a new drug or something. Bad news: your one little DNA sequence isn’t worth much.
How much? The DTC genomics company LunaDNA made these estimates in an SEC filing:
In 2018, the pharma company GSK paid $300 million for exclusive access to the tens of millions of genetic samples collected by 23andme. That’s a lot of money, but even if they split it with you, your share is trivial.
At a maximum of around $20, your personal data is worth much less to others than it is to you.
Personal Science Weekly Readings
Before you get too excited about whole genome sequencing, it’s worth reading Nita Jain’s Cancer isn't from genetic mutations. She gives several reasons, including:
For one, many hunter-gatherer groups around the world show little evidence of cancer and not because of shortened lifespans either — analyses have found a common lifespan of up to 78 years among hunter-gatherers, once the bottleneck of high infant mortality is bypassed.
Additionally, cancer incidence at different sites VARIES WIDELY. For example, colorectal cancer is very common while small intestinal cancer is 100 times less common despite the fact that the small intestine is five times longer (30 feet versus 6 feet for the colon) and characterized by nearly identical rates of mutation as the colon.
Heritability of human lifespan is about 50% when confounding factors are addressed. Your family history is generally considered to contribute as little as 10-20% for lifespan, but this new preprint claims much higher results when you consider more factors. (via RKUL)
Ethnoguessr is an online way to see how good you are at guessing genetics based on a face:
This game uses anthropological data from humanphenotypes.net. You will be shown male and female facial averages from a given ethnic group. Your job is to guess on the map where they are from, historically
About Personal Science
Personal scientists believe in using the tools and methods of science for personal rather than professional reasons. We're curious about the world around us and prefer to run our own experiments when possible, always maintaining healthy skepticism about expert claims, no matter the source.
We publish this short newsletter each Thursday for anyone who likes to use science in their daily lives.
Listen to experts, but think for yourself. Even when dealing with something as complex as genetic testing and insurance regulations, personal scientists prefer to understand the details rather than simply trust what we're told. Often the most important insights come from asking the questions that others assume have obvious answers.
If you take advantage of the free WGS offer or have other topics you'd like to cover, please let us know.