A Step Into the Private Lives of Stem Cells

[1] In his first nationwide address as president, George W. Bush said that he would allow federal funds to be committed to research on those stem cells already obtained from human embryos “where the life and death decision has already been made.” Significantly, Bush’s first prime time remarks focused not on the tumbling NASDAQ or the crumbling peace in the Middle East, but on science and morality – on what we can and should do about these remarkable and controversial cells.

[2] The poker-hot issue for the president and the nation is those stem cells derived from four-or five-day old embryos, which are capable of developing into all types of mature body cells. Scientists hope to discover how these cells can be chemically tweaked to give rise to tissues for transplant – muscle, pancreas, nerve – potentially treating everything from diabetes to paralysis.

[3] In allowing for federal support of work on existing stem cell lines, Bush took a carefully measured step. For some, it was too small a step for hopeful patients. For others, it was the first footfall on a slippery ethical slope to organ farms. But all agree – it was a carefully measured step.

[4] As stem cell backers and opponents search for the devils in the details of the president’s decision, several companies continue with their privately funded experiments on stem cells – some of which even give supporters of such work the creeps. In response to media pressure, Advanced Cell Technology (ACT), a biotech firm in Worcester, Mass., has reluctantly acknowledged its efforts to create human embryos for research via a cloning method similar to the one used for Dolly the sheep.

[5] Before this, as far as we knew, stem cells had only been obtained from donated embryos scheduled for discard or indefinite freezing. ACT’s research cannot, even now, be supported by public funds.

[6] The isolation of such controversial research in fertility clinics and biotech firms has circumvented the achievement of a broad public understanding of the current state and future hopes of stem cell science and short-circuited the process of consensus building. Private concerns – which, understandably, want to protect their intellectual property – usually conduct their work out of the public eye. Notably the initial experiments at ACT – including the recruitment of women paid between $3000 and $5000 for their eggs – have been going on in secret for over a year.

[7] Secrecy and mystery seem to be a theme even in the scientific community. Stem cell scientists themselves admit to being blind-sided by the President’s mention of 60 existing viable cell lines. “I have no idea where this number [60] came from,” said John Gearhart of Johns Hopkins University, a leading stem cell expert.

[8] There is danger lurking here. In the minds of citizens – including scientists – ignorance is far from bliss. Being kept in the dark breeds public distrust – just ask the purveyors of genetically modified foods. Trust is the substrate of good science. Undermining trust undermines the research itself.

[9] One fortunate consequence of Bush’s partial lifting of the moratorium on federal funding for stem cell research is the increased opportunity for public knowledge, oversight, and debate. His convening of a Council on Bioethics, chaired by Leon Kass of the University of Chicago, to monitor the work on federally financed stem cell lines cracks open a window into this exquisitely complicated cellular science and offers an opportunity for us to consider fundamental questions about life’s beginnings and medicine’s goals.

[10] But the window to the stem cell world will not be fully opened without participation of those not supported by government money whose work will not be required to undergo scrutiny by the NIH and the ethics council. Whether federally or privately financed, stem cell researchers should contribute to public consideration and conversation by discussing research goals and protocols openly. A public-private partnership built on trust will do much to advance both the science and the ethics of stem cells. No matter who foots the bill, the private lives of stem cells must be made public.