S1E1 - The Problem With 23 & Me

Genetic testing services have been popping up everywhere over the last decade. Due to the internet their accessibility and affordability has influenced countless individuals to want to know not only where they come from, but also how their DNA can tell them what risks to watch out for. But do the pros outweigh the cons? Join us this week as we deep dive into the complex world of genetic testing and the biggest player out there; 23 and Me.

Show Notes:

23 & Me is a genetic testing service. They provide not only a product (Health and ancestry or just ancestry kits) but also the research and testing services used in conjunction with those kits to determine a few different things

1.       What genes you may carry that increase your likelihood of having a disease like cancer

2.       What regions your genetic make up comes from

3.       They offer a service where they can connect you to others who could possibly be your relatives. Any long-lost family members, grandfathers, half siblings etc.

4.       They get your permission to use your DNA samples and results in future testing or research– this one is the one I found most intriguing.

Terms of Service:

What you’re signing up for:

1.       You acknowledge and agree that the form and nature of the Services which 23andMe provides may change from time to time without prior notice to you. 

2.       You are providing them with a DNA sample that is either yours and you are of legal age (18 I believe) or that you have permission to provide the sample (if it’s not yours, let’s say it’s your grandfathers or something)

3.       After you provide it you are giving 23 & Me the permission to test the sample and provide the results to you on your profile.

These are all pretty basic, we expect these to typically be in any terms of service agreement. Basically that you have the right to share the information, are legally allowed to use their service and that you give them the right to perform their service for you. And that they can change their service at any time without letting you know.

4.       Now this one was one of the interesting bits included in there and I quote directly from the 23 & me terms of service accessed on February 12 2019.

“Genetic Information you share with others could be used against your interests. You should be careful about sharing your Genetic Information with others. Currently, very few businesses or insurance companies request genetic information, but this could change in the future. If you are asked by an insurance company whether you have learned Genetic Information about health conditions and you do not disclose this to them, this may be considered to be fraud.”

*** One last tip: when you go in to your own doctor and request a genetic test, make sure you know where your doctors are sending your DNA testing they could be using 23 & me. Your data may be submitted to them and end up