A visit down the wild side (into the inner stuff of ourselves, and the FDA)

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23andme

Late last night, I sent a credit card payment for $99 plus almost $50 in international shipping fees to 23andme.com for a saliva testing kit that will result in a comprehensive (it is claimed) report on my DNA and its possible impact on health. I made this decision despite stories such as this rather less-than-positive Forbes Magazine article — 23andStupid: is 23andMe self destructing?:

I’d like to be able to start here by railing against our medical system, which prevents patients from getting data about our own bodies because of a paternalistic idea that people can’t look at blood test results, no less genetic information, without a doctor being involved or the government approving the exact language of the test. I’d like to be able to argue that the Food and Drug Administration is wantonly standing in the way of entrepreneurism and innovation by cracking down on 23andMe, a company that is just trying to give patients the ability to know about their own DNA, to understand their own health risks, and to participate in science.

I wish that was the story I’m about to write, but it’s not, and it all really comes down to one fact in the FDA’s brutally scathing warning letter to 23andMe, the Google GOOG +1.23%-backed personal genetics startup. It’s this quote from the letter by Ileana Elder, in the agency’s diagnostics division: “ FDA has not received any communication from 23andMe since May.”

Really? In six months, a company choosing to work in a business in which it knows the FDA believes it has jurisdiction decided not to respond to the agency for six months? At a time when 23andMe was going to be launching an advertising campaign to try to sign up a million people to its service? At a moment when Anne Wojcicki, the company’s chief executive, was going to be on the cover of FastCompany talking about how 23andMe is revolutionizing health care? And 23andMe thought the FDA was just going to, I don’t know, not notice?

My decision to make this purchase shows, in part, how a combination of experience, personal values and influencers can have an impact on purchasing decisions.

The catalyst

I observed a posting in the private HighIQWorld Facebook group, an invitation-only group with about 700 members generally restricted to individuals with exceptionally high intelligence (think way beyond Mensa).  My credentials to belong to this group are indirect. While I’m intelligent, I don’t think I’m quite at genius level. However, I tend to be interested in what really bright people are discussing.

Notably, several members expressed concern about 23andme. Some pointed to the real risk to personal privacy, possible negative  insurance consequences (if you know you have “bad” genes, and then apply for life insurance, could the insurance company later deny your claim?) and others pointed out the rather serious debate about why this business has not really co-operated with the FDA, even as it seeks publicity and attention.

But some people, including the HighIQ Group founder, said they were going for the test . . . and I decided to follow the rather intelligent leadership here.

Scarcity (or possible scarcity)

If the FDA closes the business, then I won’t be able to get the test. So I had better do it now. Yes, that is odd logic, but we know that gun sales skyrocketed in the US when there was fear of a clamp-down or regulatory control.

Validation and referencing

I’m rather biased to anything involving Google, largely because of experience. It is hard not to like a company that has already paid me for two rather enjoyable trips to northern California. If the Google brand is associated with the business, even indirectly, it gets a buy-in from me. (Let alone the fact that while some of the geniuses in the relevant Facebook group are really opposed, others are in favour.)

Cost and reward (and resources)

I won’t be impoverished by a one-time $150 purchase. I don’t anticipate a need to purchase life insurance (our family resources are at the level that the only reason to buy life insurance would relate to certain business/estate planning challenges). This is a one-time purchase.

Values

Undoubtedly, there is a part of me that likes to stretch to the frontiers, to explore new limits and boundaries and maybe go places somewhere ahead of the rest of the community. In the 1970s, I travelled overland through Africa, in the 1980s, I was one of the first to buy/build a personal computer, and in he 1990s, was among the earlier adaptors of the Internet. So, in 2012, with the rapid expansion and explosion of genetic technology, the ability to discover my DNA sequence and relate it to bigger things seems relevant. And I am not really worried about “big brother” because, if any snoops wanted to dig into my closet for real skeletons, they would find nothing (or, at most, rather boring evidence.)

I expect that some variation of these sorts of decisions influence many purchases, including those for architectural, engineering and construction services. How would you respond?

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