Posted by Jef Akst

[Entry posted at 3rd November 2009 06:54 PM GMT]

Dear Anonymous,
I'm sorry to hear about your grandson. Please do not allow yourself to be misled into thinking that the only hope for your grandson lies with embryonic stem cell research.

Unfortunately, the general public seems to be unaware of certain basic facts regarding stem cell research and the media contributes to this by frequently reporting on "stem cell" research and not being more specific as to the type of stem cell research that is producing results.
1) There are "adult" stem cells which are currently used in at least 70 therapeutic uses. Also, there is NO moral controversy with using therapies based on adult stem cells.
2) There are "embryonic" stem cells which so far have NOT produced ANY therapeutic uses and ARE the subject of great moral controversy.
3) There are "pluripotent" stem cells which are created from skin cells and offer the potential for becoming different cells similar to the hypothetical benefits of embryonic stem cells, but they do NOT involve any moral controversy.

While historically there had been a ban on taxpayer funding of embryonic stem cell research, there has never been a ban on private funding in this country and many European countries have allowed this type of research for years, but so far none of this research has yielded a single therapeutic use. All viable therapies have only been accomplished with adult stem cells.

Unfortunately, there are ideological and political forces in control of taxpayer funds, which are spurred on by pro-abortion lobbies that want to focus funding on the less promising embryonic stem cell research in order to help justify life-terminating practices. (After all, if embryonic stem cell research was showing such great promise, it seems that private funding would be pouring into this area of research because there would be a great deal of money to be made from regenerative therapies.)

The end goal should be to more quickly find working therapies that will benefit people and as such, taxpayer money should be spent on the most promising research and not spent on funding an ideological goal.

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Finally, another option is to create a national umbilical cord blood bank. Given genetic variety of the millions of samples that could be obtained in just one year if all hospitals in the country participated, stem cell matches could be found for practically anyone, thus making embryonic stem cell research obsolete.

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Dear anonymous,

I think that I understand your post. I tend to believe that there is no such misunderstanding. For example, just look at the most recent article at this forum on ?Paul Zamecnik dies?. This is a beautiful example of a physician concerned about a clinical observation: the death of an obese patient who had an overabundance of fat and a fatal dearth of protein. He was able to translate a clinical problem into a basic scientific question: how proteins are made in the body and how the production of proteins is controlled ?. A different example going in opposite direction, from basic to translational, is that of the recent Nobel Prize on telomeres and telomerases.

I have the feeling that science and medicine work in multiple directions. Maybe that is precisely why is so challenging and, at the same time, so interesting and rewarding.

Could it be that there is a misunderstanding between basic research - letting the results dictate the next step - and applied research - having a goal in mind and a more-or-less defined path to get from here to there.

Yes, there's always a bit of a mix, but this seems to be much more of an applied research project and those, from experience, can be and are more closely monitored with more specific time lines and expectations involved.

Here is more information on the decision by the California Stem Cell Report to withhold the names and also on the actions of the California stem cell agency. Some confusion has arisen, and I hope this helps to clarify just what transpired.

CIRM was slow to release the information, which by state law is public record, but they did not withhold it. Here is the string of events.

Last June, I was at the CIRM board meeting at which Marie Csete gave her account of how the CIRM SEED grants were monitored. (I carried the text of her remarks and those of directors in the four items I posted this week.)

At the meeting, I asked both the CIRM attorney, James Harrison, and the chief communications officer, Don Gibbons, for the names. They asked for a week or so delay in providing them in order to be sure the researchers had been told their names were public record and to discuss the matter with CIRM's executive committee. Given the potential impact on the researchers, I thought that was appropriate.

Some weeks passed, and I still had not heard back. So I queried Gibbons by email concerning the names. He ultimately provided information that led to their identification.

Given the decades that I have spent as a reporter and editor, my practice then and now is to publish the names of individuals involved in public matters. In the case of CIRM, the agency is involved in an unprecedented, $6 billion (including interest) experiment with taxpayer dollars that could have a major impact on science, which makes it all the more important that agency be critically examined. That said, I believe it is incumbent on journalists to consider the personal and professional impact of the publication of names on the individuals involved, many of whom are secondary to the matter at hand. In marginal cases, editors and reporters should weigh the pros and cons of such publication and whether the potential damage outweighs the possible public good. In this case, some of the questions for me were: Will better policy result if the individuals are identified? Was there wrongdoing? Is it unfair to single out these individuals while others who may be involved in more serious misdeeds (say for example, possibly some NIH grant recipients) remain anonymous and so forth?

Given the practices surrounding government research grants, public disclosure of the names in this case would carry a great potential for harm to the individuals and little public benefit. The problem is largely created by NIH grant monitoring practices, among others. As I understand it, the NIH rarely, if ever terminates a grant for lack of progress. When NIH grants are terminated, they appear to involve cases of malfeasance or some sort of wrongdoing. Such does not appear to be the case involving the three CIRM grants. However, the perception in the scientific community, right or wrong, is certain to be colored by the NIH approach. I also think it is fair to say that many CIRM researchers are not accustomed to CIRM's monitoring, particularly the three researchers, all of whom have long and respected careers.

Probably the most important question raised by this case is: Why does the NIH give away money and not monitor the grant progress much as CIRM does? CIRM Director Floyd Bloom said that under NIH practices a researcher is free to "change directions, convert personnel into equipment funds, and essentially re-program the proposed project." It may be stretching it a bit, but some folks from Enron and WorldCom are serving prison sentences for doing much the same thing.

As for CIRM's openness and transparency, given my decades of experience with California state government, I do not think it is much different than many state agencies, which is not a high hurdle. They certainly could do better. CIRM has promised to adhere to the highest standards of openness but has fallen short of that measure, which goes beyond mere legal requirements. For example, CIRM's 29 directors and additional top management must file statements of economic interest under the state's conflict of interest laws. The governor of the state of California posts his statement online along with the top officials in his administration. CIRM does not meet that standard. Instead, interested parties must make a specific request for a public record that is not on the CIRM Web site. Responses sometimes take weeks and weeks. CIRM refuses to disclose in any form the statements of the reviewers who make the de facto decisions on grant applications. That makes it all but impossible for grant applicants or the public to determine if conflicts exist. CIRM also fails to post important background material well in advance of its directors meeting, meaning that interested parties do not have enough time to comment intelligently or make plans to attend the meetings. I could go on, but that provides some perspective.

David Jensen, editor
California Stem Cell Report

Dear anonymous,

I am not sure if I understand your question. Establishing a nurturing communication with and among researchers is, in my experience, very beneficial. I used to communicate with a number of scientists, around the country, in my area if interest. In a monthly basis, I would send them my experimental data for criticism and feedback. I learned a lot from them and I was extremely grateful for their generous time and excellent input. I thought that this was the usual way of doing science. With time I have come to recognize that I might have been lucky in coming across such an extraordinary group of scientists.

The policy at the CIRM seems to me timely and appropriate. By the tone of the article and the sentiments of the researchers, I can only express my admiration for them, as well as for CIRM and the way the evaluation seems to have taken place. We all know that projects and ideas do not always work the way that we had planned.

I once heard that ? Changes for the best almost always happen first in California, then in the United States and then in the rest of the world?. The policy of NIH of ? liberty to take the research where it leads you? does not appear to be sustainable any longer. For a very simple reason: resources are finite. Priorities and objectives, particularly those proposed by researchers, and for which they are funded, are to be followed up and nurtured within the framework of a sound and healthy competition system.

Just one view. Thank you.

CIRM cannot legally withhold the information. It is a public record. I decided not to publish the names because of the reasons stated, although I believe all applicants for public research funds should be part of the public record. Nearly all other requests for public funds are public. The same rationale should apply to researchers, but ancient traditions are prevailing. I think it is time for a change.
David Jensen, editor, California Stem Cell Report

I can give progress report every week

CIRM and the California Stem Cell Report (CSCR) have decided to withhold the names of the three scientists who had their grants revoked "because doing so would unnecessarily damage their reputations." CSCR explains their rationale in more detail here: LINK

How many different grants were there? Which three were revoked? They need the grants to progress.

I am very concerned because my Grandson has Spinal Muscular Atrophy and he needs the embryonic stem cell treatment to survive, before he dies.