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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.

In the News This Week

Posted by Jesse Reynolds on September 12th, 2008

More evidence that Advanced Cell Technology is on the brink of collapse: It is closing its facility in Massachusetts, ­not renewing a lease in California, and its staff size is "way down" from the 48 it had recently.

Canadians may have been eating meat from cloned animals, producing using older techniques.

Technology Review profiles Knome's 350,000 full genome scan, and Nic Fleming of UK's The Times discovers that the "bargain" genome scan companies can yield contradictory results.

You can stay up-to-date with the latest news in reproductive and genetic technologies at our news wire web page or via its RSS feed.

Neo-con logic: Designer babies for all

Posted by Marcy Darnovsky on September 10th, 2008

Neo-conservative pundit and former Bush speech writer David Frum, credited for having coined the phrase "axis of evil" to bolster extremist foreign policy, has another bright idea.

In the course of warning fellow conservatives to heed rapidly expanding inequality (not because it's unjust but because it might cost them votes), Frum suggests that his political compatriots tackle the problem by supporting inheritable genetic modification.

Frum begins by acknowledging that the genetic enhancement of future children and generations would be almost sure to further exacerbate inequality:

It is probable that the trend to inequality will grow even stronger in the years ahead, if new genetic techniques offer those with sufficient resources the possibility of enhancing the intelligence, health, beauty and strength of children in the womb.
But Frum, though worried that inequality is leading to "The Vanishing Republican Voter" (the title of the New York Times Magazine article in which his musings appear), is not deterred. Conservatives need not object to genetically super-endowed humans, he asserts. Relying on an idiosyncratic interpretation of statements by Pope John Paul II, he proposes that genetically manipulated children could be made "laudable" by arranging their availability to everyone.

Frum's fantasy vision of designer babies for all is shared by a few outliers, such as self-described transhumanist James Hughes. Just about everyone else who has ever commented on re-engineering humanity - skeptics and boosters; observers of the left, right, and center - conclude that it would all too likely create a future of new discrimination and deep social divides.

National Academies Revise Stem Cell Research Guidelines

Posted by Jesse Reynolds on September 9th, 2008

The United States lacks federal oversight of stem cell research, and instead relies on a patchwork of regulations and guidelines from states, funders, and nonprofit organizations. Most influential have been the National Academies' Guidelines for Human Embryonic Stem Cell Research, which were just revised for the second time since their debut in 2005. Although the guidelines are nonbinding, they have served as the model for others, particularly California's $3 billion program, and will likely do so for policy under the new presidential administration.

The press release from the National Academies highlights changes in two key areas, one encouraging, and one less so. First, the committee revisited the question of payments to women who provide eggs for cloning-based stem cell research, and maintained their position that these women should not be compensated. The amendments, though, clarify the types of reimbursements that are allowed. Taking a cue from California's regulations, they aim to make the egg donor neither better nor worse off.

Women who undergo hormonal induction to generate oocytes  specifically for research purposes (such as for NT [nuclear transfer, or cloning-based  stem cell research]) should be reimbursed only for direct expenses incurred as a result of the procedure, as determined by an IRB. Direct expenses may include costs associated with travel, housing, child care, medical care, health insurance, and  actual lost wages. No payments beyond  reimbursements, cash or in-kind, should be provided for donating  oocytes for research purposes. Similarly, no payments beyond reimbursements should be made for donations of sperm for research  purposes or of somatic cells for use in  NT.

Second, the committee now recommends that the institutionally-affiliated boards that approve the stem cell research projects, ESCROs, undergo audits whose results are publicly available. We've long maintained that leaving this oversight to boards that are essentially part-and-parcel of the research institutions themselves is tantamount to letting the fox guard the henhouse. However, the National Academies is an independent nonprofit organization, and cannot impose mandates or real regulation. While this change is certainly an improvement, let's hope that any legislation under a new administration does not merely mimic the Academies' Guidelines, but instead recognizes that they were drafted by an agency with limitations.

An institution that maintains its own ESCRO committee should conduct periodic audits of the committee to verify that it is carrying out its responsibilities appropriately. Auditable records include documentation of decisions regarding the acceptability of research proposals and verification that cell lines in use at the institution were acceptably derived (see Section 1.6). Institutions should make the results of the audits available to the public.

An institution that uses an external ESCRO committee should nevertheless ensure that the registry and educational functions of an internal ESCRO committee are carried out by the external ESCRO committee on its behalf or internally by other administrative units. Those institutions that use external ESCRO committees are also responsible for ensuring that these committees are likewise carrying out their responsibilities appropriately.

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