Hold scientists accountable

January 17, 2006|By RICHARD HAYES

So now it's confirmed that South Korean stem cell king Hwang Woo Suk had been lying all along - not just about the illicit manner in which the women's eggs used in his experiments were obtained, but about his major claim to have successfully created clonal human embryos in the first place. He lied to the news media, the public, his government and patients hoping for cures.

I heard Mr. Hwang speak just over a year ago at a forum at the United Nations. He was lauded by the scientists present as the Galileo of stem cell research. When a reporter asked about rumors that the eggs used in his experiments had been obtained under questionable circumstances, he denied it. None of the other scientists present voiced the least concern.

If we are to learn the most important lessons from this sorry episode, we need to be aware of the broader context.

Mr. Hwang is not the first scientist to have lied or engaged in ethically questionable behavior concerning their experiments with human genes, stem cells or embryos. The new genetic technologies are among the most powerful and consequential ever developed. Scientists holding patent rights to successful genetic techniques stand to become millionaires many times over. If ever there was an occasion to remind ourselves of Lord Acton's dictum that power corrupts, this is it.

In 1998, New York University researcher Jamie Grifo created embryos containing genes from three parents and implanted them in infertile women in a controversial procedure to help them have children. The women involved in the experiment had not been fully informed of the risks to the fetuses they were carrying. The Food and Drug Administration, to its credit, promptly shut down the operation.

In 1999, University of Pennsylvania gene therapy scientist James Wilson misled Jesse Gelsinger, 18, and his parents about the risks inherent in an experiment that Mr. Gelsinger had volunteered for and about the financial stake that Mr. Wilson had in its success. The experiment failed, and Mr. Gelsinger died.

In 2001, Advanced Cell Technologies (ACT), a Massachusetts stem cell firm, announced that it had cloned an endangered species of Asian ox. The procedure was opposed by conservation groups working to save endangered species and was widely regarded as a publicity stunt, perhaps intended to bolster the confidence of ACT's investors. ACT had not told its own ethics committee about the experiment, and a leading member resigned in protest. The ox died two days after birth.

In 2004, California voters approved a $3 billion stem cell research program. The ballot measure was written and financed by a small group of wealthy Californians, including stem cell scientists, venture capitalists and biotech entrepreneurs.

It entrusted control of the money to a new state agency dominated by the very institutions that stand to receive the research grants. It exempted the agency's most important policy committees from California's open meetings and conflict-of-interest laws.

It failed to guarantee the safety and health of women who provide eggs for cloning research. It contained no provisions to ensure that intellectual property arrangements would benefit the people of California. And late last year, it was revealed that real estate millionaire Robert Klein, the prime author and funder of the initiative and the current chairman of the program, knowingly misrepresented its likely full cost to California voters by perhaps $1 billion.

What's going on here is both a very old story and a very new one. The old story is the drive for fame, fortune and power and the willingness of some people - in this case, scientists and biotech entrepreneurs - to put their personal drives and ambitions above the common good.

The new story is the immensity of what is at stake. The new human genetic technologies are giving scientists the power to change the nature of human life forever. They are being developed at breakneck speed. Neither public understanding nor governmental oversight has been able to keep up. Scientists and biotech corporations are playing to our deepest desires and fears in their effort to secure the commanding heights of the technology, the law and the market.

Stem cell research should go forward, but we can't entrust its leadership to the scientists and business interests now running the show. We need laws and treaties allowing stem cell research to proceed at a reasonable pace, subject to clearly demarcated ethical limits. We need oversight bodies representing all stakeholders.

Most of all, we need social and political leaders who can move beyond the polarized politics of the moment and forge the broad coalitions necessary if such policies are to be developed and adopted.

Richard Hayes is executive director of the Center for Genetics and Society in Oakland, Calif. His e-mail is rhayes@genetics-and-society.org.

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