February 27, 2008
Thanks for the interesting information. On reading it, it sets off all kinds of privacy alarm bells for all participants, in my view. Your cautionary advice on providing this most personal information for all to see is well thought out. I often think of the extensive amount of information, financial and medical, that prospective adoptive parents have to provide - especially for China - that resides in some file somewhere in China already. I must say that I am very possessive of what little information we have on our child. I don't think we will be jumping on the bandwagon any time soon.
And:
Fascinating stuff. My only comment is that the cautions in your article should be strengthened and put up front. In fact, I would go so far as to warn people away from this kind of service and actually think your initial "20 years" prediction was correct - sure, the technology is here now but it will take at least a decade or two for humanity to adequately assess the consequences of using it.
Being in the tech industry myself, and having been exposed to all manner of emerging issues related to privacy, I frankly find this development extremely unsettling. I understand the potential usefulness, but I would never consider using it for myself or anyone in my family.
Let me illustrate why (you've touched on some of this but I am known for the doom-and-gloom scenarios):
1. Person A gives cheek swab to online registry of unknown reputation. DNA information is now on record somewhere on the Internet permanently (that's the safest assumption).
2. This information is transferred from the online registry to a third party, for whatever reason. These reasons are plentiful and could be inadvertent or intentional.
3. The third party uses the information for a purpose for which it was never intended to be used. Some random examples:
(a) DNA info is distributed to insurance companies, who identify a genetic component that makes that person more at risk for a certain disease, with the result being that this person never ever qualifies for insurance again. Would I want that to happen to my child?
(b) DNA may be correlated to certain personality traits, including levels of intelligence and industriousness etc, with the result being that this person is never ever considered for the employment they seek and otherwise might have been reasonably qualified to perform. Would I want that to happen to my child?
(c) DNA gets in the hands of a government that is, let's say, racist and includes elements that want to wage war on persons of certain racial or ethnic backgrounds, with the result being that diseases are created and propagated, resulting in the murder of millions of people. Would I want that to happen to my child?
I know that (c) sounds particularly alarmist, but consider:
1. Nazi Germany.
2. The "eugenics" movement that was so influential in the early part of the last century.
3. South Africa, where it was confirmed after the fall of apartheid that some scientists on the government payroll were actually working on strains of diseases that would kill only black people - and that was BEFORE the advent of much of the DNA technology of today.
Maybe I am extra paranoid because I have a last name that identifies me with one of those diaspora groups of people that have been subject to persecution historically. When I think about it, in addition to the obvious other examples, there are many, many other groups identified by race or ethnicity that have also been through a lot of horrible stuff. Bottom line: bad things like this have happened before and will happen again.
This development is a lot like the past couple of decades where individuals increasingly began to share their personal information -- thinking nothing of it at the time -- and then ended up having it in a database somewhere, a database over which they had little to no control. For the most part, society has caught up and built in some protections to deal with these problems through various statutes etc. But the consequences of getting this online DNA sample-based networking thing wrong may be a lot worse than something like, say, identity theft (which is bad enough).
I personally would be warning people away from all of this stuff. But that's me. If my child was sick and I needed genetic info to help him or her, I might think differently.
Anyway, something to consider ... there's no question it's all fascinating stuff.