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Genomes of the Rich and Famous

Posted by Jesse Reynolds on March 5th, 2008

Francis Collins, George Church, Linda Avey, Craig Venter. Photo via Esther Dyson.

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:

Another Bill to Reform the California Stem Cell Research Program

Posted by Jesse Reynolds on March 4th, 2008

Sacramento, the capital of California

For the fourth year in a row, the Democratic chair of the California Senate Health Committee, currently Sheila Kuehl, and her Republican colleague, George Runner, have introduced a bill to address some of the flaws in the California stem cell research program, but none have yet been enacted into law. Judging by the relatively mild reaction this time from the leadership of the California Institute for Regenerative Medicine (CIRM), the latest may stand a chance of passage. That's saying a lot, since the proposition that created the CIRM was written to shield it from legislative oversight: It requires a 70% supermajority in both houses of the Legislature and the governor's signature for any modifications.

The bulk of the current reform bill, SB 1565, addresses intellectual property, requiring that grantees and licensees submit a plan for affordable access to any medical treatments that are developed out of the publicly-funded research. But the long-term impact of the Kuehl-Runner bill would likely derive from the briefer second section, which calls on the Commission on California State Government Organization and Economy (a.k.a. the Little Hoover Commission) to research and issue a report on how the structure of CIRM's governing board "could better ensure public accountability and reduce conflicts of interest."

The Hoover Commission has a good reputation in tackling just this kind of issue. Given that the CIRM's inherently-conflicted board is dominated by representatives of the very institutions vying for a big slice of the public funding pie, the Commission could recommend some significant changes, providing political cover for the Legislature to take real action.

But we won't know until the report is issued next year. In the meantime, There's no shortage of CIRM-related improvements that need to be made in the areas of good government and public interest. Some examples: requiring working group members to publicly disclose their potential conflicts of interest, bringing the CIRM into the normal folds of state governance and accountability, and removing the 70% supermajority requirement for amendment.

But having a neutral body examine the structure of the CIRM's governing board seems like a good place to start. The Commission's report is due out next year.

Previously on Biopolitical Times:

Toles on Meat Recall

Posted by Osagie Obasogie on March 3rd, 2008

As a follow up to my last post on the recent meat recall and the wisdom of eating meat from cloned animals before we know the health effects, here's an editorial cartoon by  Tom Toles that provides another interesting perspective on the recall.

Sex selection: Consumer right or violence against women?

Posted by Marcy Darnovsky on February 27th, 2008

Banner produced by the Centre for Social Research, a women's rights group in New Delhi.

Is the main problem with sex selection that do-it-yourself kits for testing fetal sex aren't as accurate as their makers claim?

From this point of view, the issue is one of consumer choice and rights. That's how it's portrayed in a recent Los Angeles Times article about a federal lawsuit filed by more than 100 women against one of the several makers of such sex selection tests.

Or is sex selection a pressing social issue? That's how it's understood in much of the world. At the United Nations, Secretary General Ban Ki-moon has just announced that opposition to sex selection - which he describes as denying "countless" women "the right even to exist" - is part of a new 15-year UN campaign to end violence against women.

The UN has been raising alarms about sex selection since 1995. In a short video called Girls Gone Missing, the UN Population Fund says it "undermin[es] demographic balance and the human rights of women and girls" and explores its "long-term negative consequences for social, economic and gender parity."

Previously on Biopolitical Times:

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