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Announcing BioPolicyWiki: An online tool tracking global biotechnology policies

Posted by Jesse Reynolds on September 18th, 2008

The Center for Genetics and Society is excited to announce the debut of the first wiki-style compendium of human biotechnology policies around the world.

BioPolicyWiki displays policies governing human genetic and reproductive technologies and practices for all countries, as well as policies adopted by major intergovernmental organizations. Both charts and narrative descriptions of the policies are included.

The "wiki" format means that anyone can edit BioPolicyWiki. With users' contributions, the initial collection of legal and policy information will grow in quantity and quality.

Currently included practices are:
Eggs for assisted reproduction
Eggs for research
Inheritable genetic modification
Preimplantation genetic diagnosis
Reproductive cloning
Research cloning
Sex selection

We invite you to explore, edit, and contribute to BioPolicyWiki.

The spitterati and trickle-down genomics

Posted by Marcy Darnovsky on September 17th, 2008

The New Yorker's view of Wendi Murdoch

Gracing the front page of The New York Times Sunday Styles section this weekend is a lengthy account of a celebrity "spit party" at which notables ejected saliva samples into test tubes. The same high-upscale gala is chronicled in the Talk of the Town section of the New Yorker.

The event, hosted by media moguls Barry Diller, Rupert Murdoch, and Harvey Weinstein, was part of a publicity push by Google-backed personal genomics start-up 23andMe. The company launched its celebrity marketing strategy this past January, when it distributed a thousand free spit kits at the elite World Economic Forum in Davos, Switzerland. Then it announced - just last week - that it's slashing its prices to Christmas-stocking levels, in a bid to make DNA tests this year's high-tech must-have. The company's press release presents the move as a way to "democratize personal genetics."

This is shrewd promotion. 23andMe has attracted gobs (so to speak) of fawning media attention for itself, and introduced consumers to the new personal genomics industry. It's also been able to deflect attention from the criticisms and concerns voiced by physicians, bioethicists, and government regulators. Inviting key reporters to the fancy parties, and throwing in free kits along with the glamour and glitz, hasn't hurt a bit.

What the company doesn't advertise is that its real business plan isn't selling spit kits or DNA tests, but compiling databases full of genetic information that it can sell to medical researchers. 23andMe misleads customers and the public about this intention both implicitly and explicitly. Its web page listing its "values" says, for example, "We believe that your genetic information should be controlled by you….Though we store and help you interpret it, your genetic information is yours to have and explore."

But buried in the New York Times account, as it is no doubt buried in 23andMe's customer agreement, is the detail that while purchasers can choose not to participate in the company's survey about their phenotypic traits, they "cannot opt out of having their information anonymously shared" with researchers.

Previously on Biopolitical Times:

Stem Cells Enter the Presidential Election; Doublespeak Follows

Posted by Jesse Reynolds on September 16th, 2008

We continue to hope that stem cell research won't be used as a political football during this American election season, or at least that discussion about will be less polarized and misleading than in the past. To date, this hope hasn't been baseless: Both presidential nominees have said they will undo President Bush's restrictions on federal funding. But in the last week, we've seen some discouraging signs.

John McCain's campaign now appears to be trying to play both sides of the issue. On Friday, it released a new radio ad that touts McCain's support of stem cell research, but without mentioning his position on the use of embryos - a common tactic of opponents of embryonic stem cell research. In the past, McCain has supported the use of embryos, but his vice-presidential pick opposes it, and the official platform of the Republican Party takes a hard-line stance. McCain's ambiguous ad may allow him to appeal to centrists while maintaining enough "wiggle room" if he later wishes to change his position.

Proponents of embryonic stem cell research who support Barack Obama quite reasonably want to draw attention to the Republican platform's extremism, and two senior fellows at the Democratic-supporting Center for American Progress highlight it in an op-ed in yesterday's Boston Globe. They cite two recent stem cell advances that relied on new techniques of cellular reprogramming, but go out of their way to attribute them to embryonic stem cells. While they describe the first as growing "out of insights into gene regulation and cell specialization gleaned in part from recent studies on embryonic stem cells," the second development is clearly mischaracterized as being from research with embryos, when it was not.

Hopefully these are not signs that the "stem cell wars" are about to flare up again. But if John McCain changes his position, either before or after the election, then that may be the case.

Previously on Biopolitical Times:

Watch for Falling Prices

Posted by Osagie Obasogie on September 15th, 2008

Google-backed startup 23andme has slashed prices for its genome scanning service in what appears to be an attempt to boost sales of a luxury item in the midst of an economic downturn. Compared to its competitors who charge over $1000 to scan a sample of genes in order to tell customers something about diseases or other traits they may be predisposed to, 23andme's new $399 price tag is a blue light special that is sure to heighten competition in the market for personal genomic services.

At the other end of the price spectrum, Cambridge-based Knowme has broken another barrier in the personal genomics market by being the first to offer full genome sequencing to any customer with $350,000 burning a hole in their pocket. Knowme's service is different in that it looks at almost all of the three billion base pairs that comprise a person's genome; companies like 23andme only sequence a fraction of this. And, some are already speculating that such full genome scans are the future of personal genomics whereby pricing is the only impediment.

Many people take the price reduction of partial genome scans and the first feasible availability of full genome sequencing as yet another marvelous example of innovation and the free market working wonders to improve our lives. But David P. Hamilton over at Bnet Business Network has a different take. Focusing on 23andme's price cut, Hamilton argues that it might actually signal the end of commercial personal genomics, not its "democratization" as 23andme argues. Hamilton points out that the problem is the business model:

The main point to remember is that personal-genomics companies don't intend to make money by selling the tests. Instead, their business generally depends on amassing a giant anonymized database of customer genetic information that can be mined for research studies by academic researchers or drug companies.
With many non-profit research centers already engaged in genome scanning, Hamilton goes on to note:
the real threat is that cheap SNP scanning will undermine the very research studies that companies like 23andMe and Navigenics planned to make their bread and butter. . . . Once reputable medical institutes get into the genomics-research game in a big way, research scientists aren't going to pay out significant fractions of their grants to get access to a commercial database when noncommercial databases - quite likely of higher quality - are more readily accessible.
It remains to be seen whether full genome scanning services like Knowme will face similar pressures. Nevertheless, the various commercial and research factors surrounding this race for cheap genomic sequencing highlights how we should look at the concerns raised by the personal genomics industry not simply as consumers, but as research subjects.

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