Turning ACGT into poetry

5 minute read

The Economist has a “special report” on personalized medicine, focusing on the business of the current set of sequence providers. Generally speaking, Dan MacArthur (Genetic Future) is quicker on this beat than me, and today is no exception, as he posts on the article:

The ruthless competition in sequencing technology mean that companies in the sequencing industry will spend the next few years butting up against the bottom line, struggling to cut the price of a genome by a few more dollars to match their competitors. That's a tough way to make a living. On the other hand, companies with skills in interpreting genomes - like, say, 23andMe and deCODEme - will be in a good position to take advantage of plummeting sequencing costs to provide useful genetic information to consumers.

There are some other business models floating around out there, but MacArthur is right about the dichotomy emerging. Rapid high-throughput sequencing is a big business with little direct marketing potential. You want to keep your machines running full tilt – it’s one of the challenges at even the scale of Research I universities, where these resources are purchased as a collective and shared out across many departments. So if you’re in the business of providing sequence, you want to contract out in large chunks, not do little teeny bits of preparation at a time. There may well come a time when the volume is so high that a provider handles both ends of the process – Amazon-like – but that will be awhile.

Meanwhile, nobody’s quite figured out how to sell sequence to people. Some of these companies have had some great ideas – I think 23andMe’s effort to tap into the pregnancy/early childhood community is very shrewd. But the reactions of “experts” quoted in the Economist article are pretty telling:

Though he has the worlds most advanced gene-sequencing technology at his fingertips, Dr Altshuler refuses to get his own genome sequenced: If someone gave it to me on a CD, Id refuse to look at the disc. The information is meaningless. Bill Gates agrees. He has not had his genome sequenced either, nor does he plan to, though after a moments reflection he adds, unless I find out I have cancer.

Yummy. Cancer. I smell some great marketing there…

Let’s face it, there’s only so far you can blackmail people into buying your service. The Mafia doesn’t inspire great brand loyalty. The overtures to the pregnancy community are very smart, but that’s still marketing based on anxiety. Turning anxiety into a positive is a great idea

I used to feel the way Altshuler does. What good could it possibly do to have my genes sequenced? I know the limits on the usefulness of the data. There’s minimal medical value for most people right now. I’m not even sure what I would do with them from a genealogical/historical perspective. If I learn something from them, it’s likely to be either bad (some T2D risk allele) or something I already know (HERC2 genotype). What a buzzkill.

I can see why some experts are skeptical of the value of widespread genetic testing. People are being taken in by Brinkley-esque schemes, companies are out there right now taking money for “genetic tests” that aren’t actually testing any genes. The field of “nutrigenomics” has spawned several such schemes, according to a 2008 article in Scientific American. Genetic tests are not likely to give anybody actionable information about their health, unless they are looking for very specific genotypes with high penetrance, like BRCA1 cancer-associated mutations. Maybe with a lot more knowledge about multilocus risks, we’ll get to the point where genetic tests are as informative as cholesterol tests – far from perfect, but at least useful indicators of risks. But we’re not there yet, far from it.

Still, I have to say my attitude has changed in the last few months. I don’t know everything I might do with the data, but I’m starting to get some good ideas. I’ve been talking to a lot of audiences, and I have to say people are really interested and excited to hear stories about genes.

There’s an audience there, willing to hear about genes because of what it tells them about themselves, about their history. “Interpretation” isn’t the service – content is the service. Right now, they seem to be treating the business model basically the same as those people who warn you when somebody changes your credit rating. Just wait around, and when we learn something new about your genes, we’ll give you an update.

I think the right model is the premium satellite channel model. What does it take to be the HBO of genomics? It takes compelling content – new, fascinating content that people are willing to subscribe to. There ought to be a lot more video. It ought to connect people to subjects they already know are deep and important, like (if I could be so bold to suggest) our evolutionary history. The content is the hook – it gets people thinking about how interesting the data are, how they connect them to other people, how much they’d like to know more.

A multi-hundred dollar purchase is a very high barrier to entry. Where’s the $25 service that someone can buy to get involved at a lower level? Where’s GENOME the magazine? These are loss-leaders for the premium services. How much would it cost to get people to write compelling stories about the histories of common haplotypes? Every month you have a genealogy feature story, a health feature, an evolution feature, maybe comparative genomics. The magazine’s features and the videos all have hooks into the software application, which tells you which of your genotypes are in the stories.

The point is, you can’t just give people a database. You have to curate the information, select it and then present it. You don’t need a talking paper clip – you need a Robert Osborne. Or several hosts – an Alton Brown, a Tony Bourdain, heck, even a Bear Grylls. Except people who really know their genetics and know how to explain stuff clearly. A slate of basic-cable programs on genetics, maybe in collaboration with an existing channel, each pointing out the ways that the company’s customers have underwritten and participated in the research. Start with the fun stuff – not the high-falutin’ “African-American Lives”-type presentation we usually see. Each show should have parts that draw people to the website – maybe haplotype-specific stories, maybe real footage of customers encountering their personal histories.

This aspect of presenting and communicating science is the true challenge today for many scientists and journalists. It’s not easy to do this stuff well. But I think in the area of genetic testing, it’s not an optional add-on – any valid business model is going to depend on keeping people engaged as research continues. Good stories give you a chance to sell your product. This week, more than 20 million people downloaded the video for one woman’s audition on “Britain’s Got Talent.” If she had a CD ready, how many would she have sold?