23andMe scandal highlights data privacy concerns shared by Axonium and Mr Koh Boon Hwee.
There are few things more frustrating to genuine progress than when the cynics and nay-sayers are proven right.
If you’ve had multiple conversations with people about genetic test kits from 23andMe.com, Ancestry.com or the like, then I’m sure you’ve heard people be sceptical about why anyone would hand over their genetic material — and $100 fee — to a private company who will simply tell them what they already knew… you’re 12.5% Irish.
The objections I’ve heard range from being privacy related (the lack of governance in a private company you have no control over or visibility into) to being downright conspiratorial.
Last week, my cousin shared an article with me from sgsme.sg — a curated news site for Singaporean SME owners. The article (“Koh Boon Hwee on investment themes that excite him” — https://www.sgsme.sg/news/money/koh-boon-hwee-investment-themes-excite-him), by Marissa Lee, is an insightful conversation with Koh Boon Hwee, Chairman of Credence Partners. Mr Koh has a distinguished career as corporate leader and entrepreneur, having chaired the boards of some of the largest companies in telecommunications, aviation, and banking.
Aware of my involvement with Axonium, my cousin drew my attention to the paragraphs where Mr Koh talks about technology and the future:
Another thing that’s unstoppable? Blockchain and its applications …
Mr Koh can think of a few problems that can be solved by a blockchain and a token. If drug companies can access a large database of a population’s genetic information, that helps them to test their formulations.
“But the two arguments against this is number one, data privacy. The second thing is, I’ve contributed my information to you, and then you allow it to be utilised by big pharma, and you collect a payment, but I as a donor and owner of my genetic information get no benefit out of it,” Mr Koh explained.
“That’s a problem we can solve with blockchain and a token: Every piece of genetic information can be put on the blockchain and the identity of the donor known, only to the blockchain. You charge big pharma a million medical tokens to rent the database, and then everyone who has contributed their data will receive a share,” he added.
“There are things you can do with token technology and the blockchain that you can’t do with today’s technology, and it makes it a much fairer world!”
In short, genetic data holds the potential for medical marvels, but the two big concerns are:
- the privacy of the individuals who contributed that data, and
- the data that was handed over for a particular reason is being used for another reason entirely without consent or shared reward to the contributor.
Despite the similarity of Axonium’s mission and Mr Koh’s remarks, he is not associated with Axonium in any way, nor has he been approached by us. His stated concerns are simply the natural hesitancies of any thinking person.
A ray of light shared by Axonium and Mr Koh is the potential for blockchain to allow the data to be used to its fullest and fairest.
Meanwhile, elsewhere on the planet, Mr Koh’s two concerns are made real by a genetic testing company and a multi-billion dollar pharmaceutical company:
https://www.livescience.com/63173-23andme-partnership-glaxosmithkline.html
The information is there for you to read, but in a nutshell:
23andMe is “collaborating” with GlaxoSmithKline (GSK) by allowing them access to their database of genetic information for 5 million people, each who would have paid a fee (the current fee starts at $99) to have their genetic data analysed for a specific purpose.
Conveniently, GSK is making a $300M “investment” in to 23andMe.
Here are my questions:
- How many of the 5 million people were asked if they consented to the use of their data outside of the scope of its original analysis?
- How much of that $300M investment will reach the pockets of the individual’s whose data is being used in the collaboration?
- The article mentions a particular gene (LRRK2) linked to Parkinson’s disease, which is one of the diseases that this collaboration will study — no doubt there will be many others studied as well. Will any of the individuals in the dataset of 5 million who have the LRRK2 gene be advised of the link between their genes and Parkinsons? Specifically, if GSK produce a related medication or treatment, will those individuals receive any benefit for the product that they unwittingly (and unwillingly) helped to create?
I’m sure the deal is perfectly legal, but is it ethical?
These are my questions, but I’m pretty sure we all know the answers.
Author: Ian Varughese (Founder of Axonium)
