Groups Renew Call to Lift Embryo Research Ban
Inspired by a new scientific breakthrough, patient advocates are mobilizing an effort to lift Congress’ 3-year-old ban on embryo research.
Their hope is that funding by the federal government--the National Institutes of Health funds half of all the biomedical research in the country--could speed scientific work on spinal cord injuries, Parkinson’s disease and other illnesses.
The opening salvo comes today, when a subcommittee of the Senate Appropriations Committee holds hearings on recent studies in which privately funded researchers grew human “stem” cells for the first time--one team using human embryos.
“We don’t have any time to waste,” said Joan Samuelson, a Santa Rosa attorney and founder of the Parkinson’s Action Network. Parkinson’s disease afflicts 1 million Americans. “This provides an opportunity to educate the public--and Congress--about what human embryo research is about, and what it’s not about.”
The ability to grow the earliest cells from which body organs are developed holds tremendous promise for treating a wide range of disorders--including heart disease, cancer and diabetes--and for production of transplant organs, which are now scarce.
“We’re definitely going to do everything we possibly can . . . to push Congress to reverse itself,” said Joann Tompkins, a Florida nurse and member of the National Spinal Cord Injury Assn., which represents the 400,000 Americans who live with such injuries.
Public lobbying is not the only lever about to be applied. Geneticist John Gearhart of the Johns Hopkins School of Medicine, one of the researchers involved in the recent studies, said he plans to apply directly to the NIH for research money, knowing he will likely be refused--but hoping to force the issue into a national debate.
“I don’t think anyone understands the pressure that will build from the scientific community and from patient and consumer groups to get the research done,” said Art Caplan, director of the bioethics center at the University of Pennsylvania, who is scheduled to testify today.
But there also will be passionate opposition from those who believe that using a human embryo for research is the taking of a life, much like abortion.
“I feel just as strongly as I ever did that an embryo is still a life,” said Rep. Jay Dickey (R-Ark.), who sponsored the ban and predicts it will remain in place. “It’s not a spare life, one that you can just throw away. It’s still killing.”
Rep. Henry A. Waxman of Los Angeles, the ranking Democrat on the House Government and Oversight Committee who led an unsuccessful congressional fight some years ago to restore federal funding for fetal tissue research, said he hopes the new, more moderate Congress will be more receptive. But he is not optimistic, predicting: “Some Republican leaders might push for an even broader ban.”
The fight over embryo research is the latest example of the friction that has developed between political ideology and science in recent years, sending a collective chill throughout a research community that is often very dependent on federal support of its work.
It pits researchers--who believe that decisions about what studies to pursue should be made independent of politics--against elected officials, who make budget decisions and maintain they are entitled to have a say in how federal dollars are spent.
The issues have been further complicated by the rapid pace of scientific and technological advances in frontiers once almost unthinkable--cloning and the creation of hybrid human/animal cells, for example--prompting policy-makers to deliberate ethical and moral dilemmas.
And in this case, the controversy finds potentially millions of Americans who ultimately could benefit from the research arguing that nothing could be more life-giving than furthering these advances. Arrayed against them is a group of lawmakers driven by their belief that an embryo outside the womb is as precious as one inside the womb, and shouldn’t be created or destroyed for the purposes of research, however worthy the outcome.
Many scientists believe that studying the human embryo--which after one week of growth constitutes a cluster of cells no bigger than the period at the end of this sentence--could yield infinite knowledge about some of nature’s worst scourges, and could prove promising in future therapies.
Those who support federal funding argue that allowing the research to remain only as a privately financed venture will leave the field completely unregulated, whereas the government could require safeguards and other protections against abuse, maintaining a certain degree of control. It is also likely to slow the process considerably because so many talented scientists will be excluded.
The research community already has made its feelings clear. The scientific journal Nature has called for removal of the ban in an editorial.
The battle is reminiscent of the one that raged for years over a similar ban on federal funding of research involving the use of fetal tissue cells obtained from abortions, a prohibition that was removed in 1993.
Groups such as Samuelson’s fear that anti-abortion lawmakers will blur the distinction that exists between embryo research, which is essentially stalled among federally funded scientists, and fetal tissue work, which is progressing.
“I don’t know where my cure will come from, so we need to be fighting on all fronts to allow all the research to continue without hindrance,” said Samuelson, 48, whose Parkinson’s was diagnosed 12 years ago.
To that end, she plans to lobby much as she did to lift the fetal tissue ban: by enlisting the aid of well-known figures, by educating lawmakers on the scientific issues, by seeking out lawmakers who have been affected by the disease, and by personal visits to legislators.
The powerful American Cancer Society also is expected to call for an end to the ban.
