Enrollment in Navigenics-Scripps study disappointing

A reader pointed me to this article on the collaborative research project between personal genomics company Navigenics and the Scripps Translational Science Institute. The project aimed to recruit 10,000 people from among employees and patients of Scripps Health and their family and friends. Recruits will receive data from a Navigenics genome scan at a subsidised price of $470, compared to the normal commercial price of $2,500.

The bad news: despite the dramatic price reduction, the project has only succeeded in recruiting 4,000 participants - just 40% of the original goal. Recruitment ends in a week, so it's unlikely that the project will be able to fill many of the remaining places before the study commences.

Why the lower-than-expected interest? Eric Topol, the program director, has his own theories:

Topol said the cost of enrolling, close to $500, deterred some.
Moreover, people are worried about what they ---- or their insurance
companies or employers ---- might find out.

"People are afraid of the data, afraid they might have some genes they don't want to know about," Topol said.

Alternatively, they might be completely underwhelmed by Navigenics' boring focus on the genetics of complex diseases, which also happens to be an area where the value of genome scan data is still generally very low (unlike, say, ancestry testing); and potential participants who actually were interested in genetics might have already spent their money on the cheaper, more complete and better-presented product from 23andMe.

Still, 4,000 participants is certainly enough for a decent research project - and perhaps once the study is completed we will finally be able to find a single happy Navigenics customer for Andrew Yates (I know, I know, they didn't pay full price - but after waiting five months for a single response I'm sure Andrew would be open to dropping his standards for inclusion).

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I have to wonder how much of that $2,000,000 revenue was spent on:

- further unpublished discounts and subsidies from the $500 (almost certainly, since it's a time honored tradition in medical accounting to write down at least half the list price)

- promotional materials and marketing

- bizdev staff salary

What I'm getting at that cost per obtained sample is probably quite negative, and I'd be interested to compare the cost per sample acquisition with Coriell's free test. My suspicion is that Coriell probably lost less per their "at no cost to participants" acquisition than Navigenics' pay-to-participate model... though I have no way to even pretend to verify such a speculation.

I can help that speculation. Coriell's study costs about 1000 USD for each participant. So all comapnies charging less than that are probably not making the money off of the testing....Which means that they are pulling A Celera and hoping to sell access to the database.....



Research should be free to participants. Otherwise, spending that money and potentially losing it's benefit is one way to COERCE them into staying with the study......

You can't coerce someone and expect IRB approval.....
Frankly, I am surprised Scripps IRB let that happen.


Which means that they are pulling A Celera and hoping to sell access to the database.....

Well, there's that - but I suspect the major goal is to create a critical mass of customers early, and then make back the losses once the cost of genotyping goes down. This makes good sense for a self-marketing system like 23andMe's (where users have a social incentive to recruit friends and family).

No doubt there will be commercial applications for the database later, but I'm not entirely sure why you see this as so sinister. Customers are well aware of this when they sign up, and it's not like they're selling off their credit card numbers - just aggregated, anonymised genetic information.