This makes it a uniquely powerful source of information about you – information that is currently (and legally) used for medical, insurance and law enforcement purposes in the United States and elsewhere. What about 10 years from now? Is it possible that genetic analysis could one day offer far deeper and more personal insights into who we are? It is certain to offer greater insight into disease risk (heart disease, mental health, cancer, etc.) and life-expectancy, but possibly also sexual orientation, behavioral tendencies (such as risk tolerance), spirituality, IQ, and more.
Your genome contains a LOT more information than we currently understand, and what we currently understand is also a lot more than what 23andMe reports back to their customers in the form ancestry, disease predisposition and physical attribute information. You do not know who these third parties will be, you will not benefit financially, and once you have opted-in you can never completely opt-out. 23andMe’s genetic database stands to generate significant revenue both now (such as a $300 million drug development deal with GlaxoSmithKline in 2018) and in perpetuity. You are contributing to an incredibly valuable corporate asset that will be sold to third-parties. It’s also FANTASTIC that these genomic resources are being created and shared, and they will no doubt lead to life-changing therapies for debilitating conditions.īut would these 80% of people feel less inclined to opt-in if they understood that: To be fair, 23andMe and similar companies explicitly ask customers to opt-in to ‘sharing’ their data with third-parties for research purposes, and it seems that about 80% of their customers agree to this. This secondary market currently consists of selling the so-called ‘anonymized’ genomes of its customers to big pharma for research purposes, but in the future could involve something more. I’m wary about giving my personal genetic blueprint (my ‘genome’) to a corporation, especially a privately held corporation whose business model rests not on consumer sales, but on a potentially much larger secondary market. Why do I want to take 23andMe anonymously? 7 Am I going to get my 23andMe results anonymously?. 6.4 Is anonymizing my 23andMe results in this way illegal? Unethical?. 6.2 A step-by-step approach to anonymous 23andMe testing. 6.1 What key information must I keep safe to preserve my genetic privacy?. 6 Is it really possible to get anonymous 23andMe results?. 5 What if I delete my account with 23andMe after I get my results? Will this protect my privacy?. 4.2 Part 2: How likely is it that a match to my distant cousin could expose my identity?. 4.1 Part 1: How likely is it that existing genetic databases contain at least a distant cousin of mine?. 4 How easy would it really be for someone to identify me from my genetic profile?. #SHOULD I GET MY HEALTH REPORT FROM 23ANDME HOW TO#
3 Do even scientists and policy makers know how to safeguard my genetic privacy?.2 Doesn’t 23andMe already protect my privacy?.
1 Why do I want to take 23andMe anonymously?.
Ownership of my DNA is a big concern for me, and this places me at direct odds with what DTC genetic test providers are really after: not just my $99 USD, but permanent ownership of my personal genetic blueprint. Most of this data won’t actually be used to create my personalized health and ancestry reports, but nevertheless contains a treasure trove of information about me and my family.įor example, I’m curious about creating DIY genetic tests for predicting risk of lymphedema.īut this unprecedented insight into my genetic makeup comes at a cost, and it’s not just monetary. Having spent the last decade working as a scientist in the field of medical diagnostics, I’m perhaps even more curious to get my hands on the ~700,000 raw data points that they will extract from my DNA. I’m curious about what 23andMe and similar direct-to-consumer (DTC) genetic testing services can tell me about my health, about where my ancestors called home, and about what makes me unique (or not) as a human. I’ll explain why, and how I plan on doing it. I’m thinking about sending my DNA in to 23andMe anonymously.
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