Beep boop - this is a robot. A new show has been posted to TWiT…
What are your thoughts about today’s show? We’d love to hear from you!
1 Like
I was a bit surprised that there was not so much reaction to the 23&Me news on the part of @JeffJarvis and @gigastacey, perhaps because the company’s CEO has been talking about doing this for quite some time now. The CEO was talking at my institution about a year ago and mentioned the possibility of using their genetic data to produce more effective therapies for Parkinson’s disease, and I still experienced a fair amount of trepidation over this possibility when I heard about this again on TWIG.
A person’s genetic material can be used to invade their privacy on a level far beyond what anyone can do with your browser’s cookies. Your genetic material can divulge your membership in ethnic groups, relationships to historical events, your propensity for future diseases, and so on. Luckily, we have long ago realized the importance of informed consent in the US. HIPAA laws in the US require informed consent for use of your medical information and you may withdraw your consent at any time. It cannot be overstated just how severe of a privacy violation it would be to use a person’s genetic information in a way that she may not have consented to–especially because that genetic information may be misused for extremely nefarious purposes.
I do believe that 23&Me makes it possible to opt-out of several different uses of this data, although part of me is still not convinced that we can give consumers the proper amount of informed consent that is ethically (and legally) required. As @Leo has said before how annoying it is to see ads while paying for a service, let me counter: the age-old wisdom says, “if you don’t pay for a service, then you are the product.” Isn’t it somewhat annoying to pay for a service and still know that you’re the product, in a way that can have such drastic invasions of your privacy. It can be argued that this is made even worse if you are a consumer that does not understand the downside risks to you and your family.
And at the risk of long passage, let me add that this line is what really gets the back of my neck tingling:
…in its database, 23&Me can find causal links… [emphasis mine]
I work in an area of statistics called Causal Inference, where statisticians try to break the “correlation is not causation” curse. To do this, researchers employ mental models of the world about the factors being studied and a particular outcome that they would like to understand.
Now, I obviously don’t know the specifics about how the company is going to use this data. But if they are doing Causal Inference, it is quite possible that this extremely personally-identifiable data may need to be linked to external information sources in order to control for all the appropriate factors. And since this seems to be a big priority for them, where do they go next if they find out (as many drug companies do, with the abysmal success rate of new pharmaceutical products) that simply giving out this data does not illuminate the causal relationships that they think they have?
The data that they have can be used for amazing purposes. For example, it can help companies understand how many patients are likely to suffer from rare diseases, which may not be diagnosed at the proper rates they occur in the real world. On the other hand, there is additional potential for misuse. I’d imagine that the 23&Me dataset is not representative of the whole nation and may under-represent certain groups. The African-American community has historically (and with good reason) been wary of medical professionals, and many in that community may not be keen on handing out that information. This has the potential to cause or enlarge disparities in the level of health care if those under-represented groups do not have products made for their illnesses.
Thanks again for another interesting show!
3 Likes
As usual love this show. Even with all the joking and banter it is obvious that you all respect each other very much and that shines through.
2 Likes
THX, Peggy. Yup, we DO love and respect each other. 
And I was actually listening to TWIG from this week and your voice when I got this email while out on my walk this morning. Synchronicity!
1 Like
Hahahahaha! That’s awesome 
