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Illinois bill to fund stem cell research
Posted by Jesse Reynolds on March 7th, 2007
| Public funding of stem cell research in Illinois - already the practice due to executive orders - is about to become enshrined in law. The identical bills which have passed both the House and Senate are, in a number of ways, improvements over those seen in other states, such as California and Connecticut. (I hope that the work of public interest groups to highlight the flaws of these programs played a role in these provisions.) But they do contain significant flaws.
First, the good news:
* The Illinois Regenerative Medicine Institute would be publicly accountable. Its new seven-person board, appointed by the governor, would effectively report to the Department of Public Health, which would establish most of the policies.
* Only nonprofit institutions could receive grants, although corporate representatives are permitted on the board.
* The bills do not set aside, and consequently lock-up, any funds. They merely establish a granting structure. Stem cell research must compete with a complete array of other budget priorities on a level playing field.
* They put various forms of stem cell research on equal footing.
* The bills contain tough provisions to avoid conflict-of-interest and require public disclosure of personal financial interests. This applies to members of the governing board as well as any advisory committees. (California, take note.) What's more, the governing board can't include employees of any institution that is eligible for grants.
* Provisions for transparency include disclosure of the identities of all applicants of funding - not just the grantees. California, take note again.
* Reproductive cloning is banned and criminalized as a class 1 felony.
The most glaring shortcoming of the bills is one of omission: There is no mention of intellectual property provisions. Perhaps there is an existing statute governing state-funded research. If not, who will own the patents? Will the state receive a portion of profitable discoveries made with tax dollars? Will the state's health care program be forced to pay high prices for such therapies?
Furthermore, the bill prohibits neither payments to women to provide eggs for cloning-based stem cell research, nor the reselling of their eggs. But it does call on the governing board to establish research standards "in consultation with... experts such as the International Society for Stem Cell Research, the California Institute for Regenerative Medicine, the Institute of Medicine." I would hope, if not expect, that such guidelines would be enforceable - not voluntary - and prohibit compensation for egg providers.
Finally, one clause jumped out at me:
All Institute information concerning medical research shall be confidential and privileged and not subject to disclosure to any person other than Institute personnel.
This is broadly worded, and leaves room for abuse. It should be tightened to cover only justifiable secrets such as research subjects' private details and proprietary trade secrets.
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| WWJD – What Would James (Cameron) Do?
Posted by Osagie K. Obasogie on March 6th, 2007
| James Cameron is quite accustomed to casting big stars in his films. Leonardo DiCaprio made Cameron’s Titanic the single most profitable movie ever and the Terminator franchise he and Arnold Schwarzenegger built became so successful that the rising political star has been dubbed California’s “Governator.” Yet
many were surprised when Cameron took his legendary casting to the next
level by setting his eyes on Jesus – yes, Jesus – as his next leading
man. His latest film, “The Lost Tomb of Jesus,” is a documentary claiming to find Jesus’ burial casket. Cameron and crew use DNA testing and statistical probabilities to argue that the woman’s ossuary
found next to his with “Mary Magdalene” written on its side contained
Jesus’ wife’s remains and that a third ossuary held their son Judah’s
bones. Sound vaguely familiar? Well, let’s just say that Dan Brown may very well be looking into whether his copyright has been infringed. Predictably, this has set off a firestorm
about science and faith, and whether the former can confirm or disprove
the latter. Using biotechnology and statistics to suggest that Jesus
was married, procreated, and left bones behind is probably enough to
make Pat Robertson’s head explode. But several other important issues
have received less attention, such as whether Cameron’s use of DNA
tests can be considered “science,” what kind of respect spiritual
beliefs deserve in a pluralist society, and what might be in store now
that some think Jesus’ DNA is among us. DNA testing’s perceived certainty is having a growing cultural resonance,
from the burgeoning C.S.I. franchise to real life prosecutors offering
genetic tests as “slam dunk” evidence. But the “science” behind this
film’s claims is far from dispositive. What’s most troubling is that
Cameron and company know this, and apparently don’t care. When asked
why their investigations did not lead to further DNA testing to confirm
their claims, Simcha Jacobovici (the film’s director) said
“We’re not scientists. At the end of the day we can’t wait till every
ossuary is tested for DNA. We took the story that far. At some point
you have to say, ‘I’ve done my job as a journalist.’” Few find these claims any more credible than the Virgin Mary “appearing” in a grilled cheese sandwich.
But, in many ways, the damage has already been done. The danger with
society’s current relationship with biotechnology as reflected here is
not simply that science might run amuck and cause harm. Rather, it also
implicates the delicate balance that needs to be struck between science
and faiths that, by definition, cannot be proved or disproved. For
example, when given access to what they believe might be the remains of
a key religious figure who many consider to be God’s physical
incarnation, what do Cameron and company decide to do? They flippantly
subject these remains to DNA testing as if they have the same social
significance as finding out “Who’s the Baby’s Daddy” on Maury Povich’s
show. Indigenous communities have been struggling
for quite some time with biotechnology being used to belie deeply held
traditions concerning who they are and their origins. Now, major
religions like Christianity appear to be in the cross hairs. What
does this all mean? Surely, it’s too early to tell. But, a number of
scenarios are possible. For example, if people like Cameron and
Jacobovici are not above DNA testing what they believe to be Jesus’
remains, will they not also be tempted to use related technologies (if
available) to see which persons living today are genetically linked to
him? And, if a real life Sophie Neveu was putatively “found,” what are the implications? If David Geffen is concerned
over what he calls the Clinton and Bush royal families in American
electoral politics, what in the world would happen if a candidate
claims to have DNA matching Christ? Are you going to oppose his tax
cuts?
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| Congressmen Introduce Bill to End Gene Patents
Posted by Osagie K. Obasogie on February 28th, 2007
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Patenting genes has become a burgeoning biotech business model, with over the 20% of the human genome already in privately owned hands. Thankfully, Congress is starting to look into this matter. Representatives Xavier Becerra (CA-31) and Dave Weldon, (FL-15) recently introduced a bill in the United States House of Representatives aiming to end patents on human genes. Congress would be wise to debate this matter seriously and move swiftly before this human genome gold rush by biomedical 49ers privatizes more of our common humanity. Click here for a thoughtful essay by Lori Andrews on rethinking this area of patent policy.
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| CIRM grant process reveals deep flaws
Posted by Jesse Reynolds on February 22nd, 2007
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Last week, the California stem cell research program awarded its first research grants. Although the media coverage was universally laudatory, this milestone was not without significant shortcomings.
First, this round of grants represents the first public funding of cloning-based stem cell research in the US. (Two such grants were funded, at Stanford and Burham.) Yet the program's research standards remain inadequate. Oversight of the research will be left in the hands of institutionally-formed, institutionally-affiliated boards that are dominated by researchers themselves.
Second, the grant review process remains deeply flawed. The members of the grant review panel are still not required to publicly disclose their personal financial interests, leaving the door open for conflicts of interest. (The agency, however, did take the step of indicating which members of the review panel were recused from which application review.) This panel is supposedly advisory, because the program's governing board, the ICOC, is required to give final approval of the grants. But in fact, the ICOC voted on many of them in blocks and did little more than demarcate a funding line in the ordered rankings of the "advisory" review board. This makes the grant review panel a de facto decision-making body, which by California law must disclose personal financial interests.
What's more, the program is not releasing the names or institutions of the applications that were denied funding. By only knowing part of the story - the funded part - it's impossible to see any biases.
Finally, during the most high-profile meeting of the ICOC since the inception of the stem cell research program, the board struggled to maintain a quorum. It was not met at all on the first day of the two-day meeting, during which grants were approved by "provisional votes." These were confirmed en masse the next day, when there was barely a quorum. This is embarrassing. The ICOC needs to adopt attendance standards.
Although the stem cell research program may have made significant progress since its clumsy and arrogant inception, this is still no way to manage a $300 million per year agency.
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