Genomes of the Rich and Famous

The prospect of biotechnology companies capitalizing on genetic information in order to develop profitable products without properly compensating the studied populations brings to mind biocolonialism, in which politically and economically vulnerable indigenous groups are exploited. But a growing convergence of genomics and information technology may lead, ironically, to the genetic "exploitation" of society's most elite.

A new brief by the ETC Group on the rapidly growing direct-to-consumer genetic testing industry asserts that the genomic data - which clients pay handsomely to have taken from them - will likely be correlated with health data in order to develop new products:

[T]the information gleaned from most genetic tests has very limited use for patients, but it is extremely valuable to companies and researchers trying to establish links between medical conditions and genetic variations, enabling - they hope - the development of drugs targeted to people with specific genetic profiles. In the shorter term, drugs that have been taken off the market due to unexpected adverse reactions in a small percentage of the population could be re-marketed as personalized drugs, intended only for those with the appropriate genetic profile. Through clever (and often misleading) marketing, some companies are persuading consumers to pay for storage of genetic data and health information, which the companies intend to use (e.g., sell) for research and drug development.

The highest profile company in this field is 23andMe, backed by Google both financially and maritally. It recently took the opportunity of the elite gathering, the World Economic Forum, to entice the globe's movers and shakers with one thousand free test kits and memberships. An online photo stream posted by Esther Dyson, a 23andMe investor and board member, reveals the chummy atmosphere as the saliva of the elite is collected. Shown spitting into tubes and schmoozing are the top dogs of media (from Time, the New York Times, the Financial Times), investing (Peter Thiel from Clarium Capital and formerly of PayPal), marketing (Richard Edelman of Edelman, David Kenny of Digitas/Publicis, Sir Martin Sorrell of WPP Group), infotech (Michael Dell of Dell Computers, Anatoly Karachinsky of the IBS group, Geraldine and Loic LeMeur), biotech (George Church, Linda Avey, Craig Venter), academia (Francis Collins), and pop culture (Peter Gabriel, Naomi Campbell, Goldie Hawn, Kurt Russell) .

Not only is Google an investor in 23andMe, it is also a likely future business partner. As the ETC Group points out, the real value will come from correlating genomic data with health information. Sure enough, Google recently announced that it has entered the business of health records management. And 23andMe's privacy statement makes the possibility clear:

To achieve our research goals, 23andMe may enter into partnerships with commercial and/or non-profit organizations that conduct scientific and/or medical research. Such partnerships may allow an organization access to our databases of Genetic Information and other contributed Phenotypic Information, so that, for example, the organization can search, without knowing the identities of the individuals involved, for the correlation between presence of a particular genetic variation and a particular health condition or trait. We may receive compensation from these research partners.

Of course, the half a million SNP's offered by 23andMe - most of which are currently meaningless - for a mere thousand dollars may not meet the high expectations of today's hoity toity. Another Google-backed company, Knome, founded by Harvard's George Church (who is also an adviser to 23andMe), offers a full genome sequence - most of which is currently meaningless - for $350,000. An article in yesterday's New York Times profiled a seemingly happy customer, self-described "transhumanist" Dan Stoicescu:

"I'd rather spend my money on my genome than a Bentley or an airplane," said Mr. Stoicescu, 56, a biotechnology entrepreneur who retired two years ago after selling his company. He says he will check discoveries about genetic disease risk against his genome sequence daily, "like a stock portfolio."...

Biologists have mixed feelings about the emergence of the genome as a luxury item. Some worry that what they have dubbed "genomic elitism" could sour the public on genetic research that has long promised better, individualized health care for all. But others see the boutique genome as something like a $20 million tourist voyage to space - a necessary rite of passage for technology that may soon be within the grasp of the rest of us....

"I feel like everyone's going to have to get it done at some point, so why not be one of the first?" said Eugene Katchalov, 27, a money manager in Manhattan who has met with Mr. Conde [Knome's CEO] twice....

"What the heck am I doing?" Mr. Stoicescu recalls wondering. "And how many children in Africa might have been fed?"

Then he offered up his arm and gave her three test tubes of his blood.

Previously on Biopolitical Times:

• One gene, two genes; Red genes, blue genes
• Transhumanists as Nihilists
• PhRMA and BIO self-image: Downtrodden and besieged