Monday, January 30, 2006

A Report from a Patient Advocate on Today's Ethics Meeting

The ethics of stem cell research, informed consent and the issue of cash-for-eggs were on the agenda today at a meeting of the Standards Working Group in Los Angeles – a session that will continue Tuesday.

Unfortunately we were not able to attend, and the CIRM event was not available at offsite locations or on the Web. So we asked some of the regular observers -- critics and supporters of CIRM -- if they were interested in sending us a report from the trenches. CIRM was invited as well. We promised to publish the reports verbatim.

The first comes from Don Reed, an unabashed fan of the stem cell agency. His account includes a report about discussion by the working group of the Korean scandal and an apparent decision to bar use of any eggs from either outside or inside California that were obtained through compensation. Reimbursement of expenses is apparently allowed. Here is Reed's account, including his headline.

CIRM BREAKS NEW GROUND IN SCIENTIFIC ACCOUNTABILITY

The California Institute for Regenerative Medicine wrestled with intellectual and ethical issues in an eight-hour meeting today, culminating in new standards for egg donor reimbursments and standards for stem cell lines.

It was pointed out that the scientists in the room had published more than one thousand peer-reviewed scientific papers. If brain power and heart were electricity, we could have powered a city!

“Are we talking eggs today?” one bystander questioned Dr. Ann Kiessling, director of the Bedford Stem Cell Research Foundation, and so it proved.

The meeting was called to order by Sherry Lansing, former President of Paramount Motion Pictures Studios.

“Seven months work by many people have been brought together today,” she said, “Today and tomorrow, we will make our recommendations, adding them to the many pages of written submissions and oral contributions by the public. This will be discussed and decided upon by the Independent Citizens’ Oversight Committee .”

An immediate controversy was raised by Ms. Lansing, referring to the voluntary leave of absence taken by Dr. Jose Cibelli. Dr. Cibelli was a writer on a paper by Hwang Wu Suk of South Korea, who has been involved in a major scandal. Dr. Cibelli has asked that his work be investigated by his home college, and that he be allowed a leave of absence until the matter is settled.

CIRM President Dr. Zach Hall stressed that the presumption of innocence applies here, as it does for every American.

One audience member asked how we could be sure fraud did not happen here in California?

Dr. Hall pointed out that Hwang’s misdeeds were pointed out by his fellow scientists.

False science will inevitably be brought to light when other scientists try to build on it. Truth stands; lies collapse. When another worker in the field attempts to replicate the experiment, and finds out it does not work, the falsity becomes clear.

Co-chair Bernie Lo, ethicist, pointed out the multiple layers of checks and counterchecks the California system is blessed with in the oversight area. In addition to groups like the Internal Review Boards (IRBs) and(Stem Cell Research Oversight committees (SCROs) which will keep track of the experiments, and the committee of out-of-state scientists who review the project’s feasibility before funding is even considered, the Independent Citizens’ Oversight Committee and the entire staff of CIRM have no more important assignment than maintaining the integrity of California’s stem cell research program.

Anyone who wonders how the California stem cell research program works should come to any of the many public meetings like today’s, one of 57 so far in the CIRM’s short existence.

For example, California has set a very high standard for the obtainment of stem cell lines, including no compensation for the egg donors who help in the making of the colonies of cells.

But can we expect poor women to donate eggs if they cannot afford time off from work?

Compensation no, reimbursement, yes; that was the answer which emerged after several hours of debate among scientists, ethicists, and the public.

Now, what about other countries which do pay donors? Can we use their stem cell lines, which do not follow our ethical guidelines?

I personally wanted the answer to be yes, because we need stem cell lines, and also because I think women should be paid handsomely for their gift to the world.

But the board decided that not only did we have to go by the highest standard, but also so did anyone whose stem cell lines we might want to use.

This slows us down.

But it is typical of the go-the-extra-mile attitude of everyone connected to the California stem cell program.

But don’t take my word for it.

Come to the next meeting and see for yourself.

Just go to www.CIRM.CA.gov and click on Upcoming meetings.

You are welcome.
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