It's nada until they have Larry King

8 minute read

Back in May, Nature ran an article (non-free) titled, "Celebrity genomes alarm researchers," by Erika Check. The article's premise:

Genome researchers are questioning the plans of some of their number to stage high-profile releases of their very own genome sequences.

The article lumped together at least four distinct sequencing efforts, including Venter's sequencing of his own genome, 454 Life Sciences sequencing of James Watson's genome, the "privately funded" Personal Genome Project, and the Archon Genomics X Prize. The first two are already complete; the others are still ongoing, and details about progress have been relatively quiet.

The "freakshow" aspect of Check's Nature article was supplied by the Archon X Prize. This $10 million award is only a proof-of-technology test: sequence 100 genomes in 10 days, for less than $10,000 per genome, and you win the prize. But that's really too dry to make headlines -- nothing so interesting as the spaceflights that won the Ansari X Prize, so they've instituted a super bonus round:

The prizewinner can claim a $1-million bonus by sequencing a list of 100 individuals, including people nominated by disease advocacy groups, and celebrities such as television journalist Larry King, cosmologist Stephen Hawking, Google co-founder Larry Page, Microsoft co-founder Paul Allen and former junk-bond trader Michael Milken.

Will the winning group go for the bonus? Who knows? If their technology hits the $10,000-per-genome price point, the $1 million bonus just pays for the 100 bonus genomes. So it's not exactly a bonus. Still, a company that saw the headlines 454 got for delivering Watson's DNA on DVD will probably salivate at the chance to do the same for Stephen Hawking.

Michael Milken, not so much.

But it's all quite obvious that when complete genome sequencing is first made available, rich people will be among the first to have them. And since many rich people are also famous, we'll be hearing about the rich and famous. But we won't be hearing about them too soon, because it will be a while before the technology gets to the X Prize level.

Which leaves us with the more interesting project in the short term -- the Personal Genome Project (PGP). This has its detractors also, because of the decision to sample well-known geneticists as volunteers, instead of anonymous donors or, well, non-geneticists.

Check's article lumped this criticism together with the celebrity angle in her article -- one of the reasons I didn't link it at the time. For instance, the article included a quote from Michael Ashburner that clearly applies to the X Prize:

"I'd hate the availability of single-genome sequencing to be based purely on money and fame," says Michael Ashburner, a geneticist at the University of Cambridge, UK. "Just doing famous or very rich people is bloody tacky, actually."

While a quote from Francis Collins appears directed toward the PGP:

"If all the sequences obtained over the next year or two are done on scientists with strong financial positions, that will send a message quite contrary to what the genome project aimed to achieve," says Francis Collins, head of the US National Human Genome Research Institute (NHGRI) in Bethesda, Maryland.

That's confusing. There seems to be a general feeling that it's unseemly not to sample ordinary people, since the hope is that everyone will benefit from genomics; but disdain toward celebrity sequencing only applies to a small part of the overall situation.

Plus, Collins is concerned with a policy question himself, since the NHGRI is going to sample its own set of 100 people:

The NHGRI is now planning to sequence about 100 individual genomes at its three publicly funded sequencing centres over the next couple of years. Collins says the institute will ask for scientific advice on who should be sequenced first. One question is what pool of sequenced individuals will yield the most useful information.

So that means at least two directly competing whole-genome sequencing projects going on right now, with a large prize waiting for the first private company that can lay a claim on it by sequencing DNA fast enough and cheaply enough.

The volunteers

So, why did I choose to write about this now? This week, the Personal Genome Project announced its first 10 sequencing volunteers. Nine of them are listed along with their bios on Blaine Bettinger's Genetic Genealogist blog. One volunteer did not choose to be listed publicly.

These are not celebrities. It is probable that if you're not a geneticist, you haven't heard of any of them. On the other hand, they are all accomplished people with substantial resumes -- some academic, many in business.

Esther Dyson went public with an op-ed before this week's announcement, listing her reasons for volunteering:

But what about the people who are less fortunate than me? I want to push questions about those less lucky to the fore -- and get us all to think about them. It's not just who gets health care and how it gets paid for, or whether employers can discriminate against people with certain conditions or just a greater-than-average propensity for them. What of someone who has a particular susceptibility to, say, alcohol? Does he pay an extra tax on booze? Or does he get a tax credit for behaving well, while a less susceptible person is denied the opportunity to benefit by behaving "properly"? (Subsidies and penalties cut both ways.) Should people have the right to refuse subsidized medical care and live as they wish? These questions may sound far-fetched, but they won't be once society knows enough information to start asking them.

From her description, it appears that the volunteers are not only donors but also stakeholders in the project -- in terms of directing its handling of results and protocols. Project leader George Church did an interview last year with MIT Technology Review that discusses his ideas at the beginning of the project:

TR: Are you recruiting participants for the pilot project? Who will be the pioneers?
GC: It took a year for us to get permission for the project from our institutional review board. The recruiting process will go in stages. The board asked that I start with myself because I am well-informed and could stop the project if I saw a problem. We will expand to two more people in March; and once we've worked out a mechanism to show that the benefits outweigh risks for the first three people, we can recruit more people. We have 140 people who would like to participate. The total number of participants [at this phase] will be limited by funds and by the review board's assessment of how it went. We are trying to get funds for a large number of people.
The initial participants will probably be tenured human geneticists, because they know the risks and other issues. Eventually, we want a broad, diverse set of people from different social and economic groups, and both healthy and unhealthy people. But they will need to be specifically up to speed on how genetics works. This could be something very big once people tune into it. Not many know people know about it so far.

Hsien-Hsien Lei has been following this story, and she has given some reasons why geneticists may be the best subjects for the initial project:

I dont look upon the PGP-10 as people of privilege who got access to something that everyone wants but few people get like iPhones. They are actually guinea pigs doing something that few of us dare! Those commenting on the PGP-10s money and fame come off green with jealousy. In their world, whole genome sequencing might be something of great value, but a general population survey will surely find more fear than desire.

It is clear from Church's description that there is really no alternative to people with substantial genetics training as volunteers, because informed consent on a project of this scale is extravagantly difficult to demonstrate. It is essential to the project that the subjects be public, because otherwise they cannot truly assess the risks of public genome information.

But the skeptic in me has to point out that not only are these volunteers trained in genetics, almost all of them are poised to profit if personal genomics takes off. Many are investors or founders of companies in the new field. Those who aren't are in a position to be at any time they choose. And some of them occupy academic positions with substantial power to influence potential critics. So collectively, they have a level of safety that other people typically lack, as well as a strong pecuniary interest in the project's success.

Kind of like that dude from Blade Runner with the Coke-bottle glasses. Which is not the best image for your friendly personal genome project....

I don't think it matters a bit if the first public genomes are all famous people. I mean, we've been looking at Venter's sequence for quite a while now. Heck, if we could get the genomes of all the Hollywood tabloid starlets, we could probably do some good by identifying genes that make them have unusual affinities for teeny-weeny dogs.

But if Paris Hilton and Ivanka Trump went to Las Vegas to help Steve Wynn with a secret project involving hotel design, we would probably figure their interests were not purely altruistic.

So, I actually think it will be a little comforting to see them churning out real celebrity genomes, because it will mean that the project is already successful. I assume that Oprah will be out there first -- I mean, not only was she early on the whole-body scan bandwagon, but she has already had her DNA taken for ancestry testing.

Hey, she can afford it now...maybe it's already on her fall TV schedule!

That would make the whole thing a write-off.