Medical research is advancing by leaps and bounds, along the way uncovering wonderful new treatments for dread diseases, genetic disabilities, and ghastly accidents. With any luck, these new cures will work their way into the marketplace in coming decades, perhaps lifting from most Americans the threat of cancer, Alzheimer’s, Parkinson’s, and other maladies.
Foundations are playing a significant role by funding particular research, typically through nonprofit groups such as the Parkinson’s research charities. Much of this work deserves to be praised for the undeniable benefits it will bring to millions of afflicted patients, their families, and those as yet unborn, who will use the new sciences to prevent disease in the first place.
But in the rush to seize on new cures, scientists and their foundation backers are practicing some pretty unsavory research, which critics say should be minimized or stopped.
Of course, much medical research is painful to perform and manage, because of the moral dilemmas created by desperate patients and limited resources, by the approach of death, and by the anguish shared by all. But the controversial research examined here is that involving the use of fetal tissue and yet-to-be implanted human embryos (the latter generally referred to as embryonic stem-cell research).
Research that uses fetal organs, limbs, eyes and brains is commonplace. So commonplace, in fact, that the federal government distributes 15-20 first-trimester organs per week, at no charge, to NIH-funded researchers. Several firms will send a selection of fresh organs via overnight mail, from fetuses up to eight months old, as requested by the researchers over the Internet.
These firms’ price lists are varied; most ask for a flat fee for each organ, while at least one has charged according to the laws of supply and demand, seeking $999 for an undamaged brain and $50 for an eye. These firms also offer to meet researchers’ special needs, including the use of particular freezing techniques, the avoidance of poisons during the abortion, or the use of specialized techniques and tools such as extra-wide suction tubes. The researchers who use these organs come form every corner of the bioresearch community, from private firms to major hospitals, foundations, and universities.
The trade in fetal organs was made possible by a 1993 law, the NIH Revitalization Act, backed by foundation-supported charities such as the Juvenile Diabetes Foundation and the Parkinson’s Action Network. The law requires that the mother’s consent be gained before the fetus is used in research, and bars payments from researchers to the mother.
Although the law grandly declares that it is illegal to buy or sell fetal parts, it does allow “reasonable payments” for the cost of collecting, preparing, and forwarding the organs. The law requires no government oversight of the sector, so there is little data on its scale, nor any reviews to ensure compliance. Many scientists say compliance with this law fulfills all ethical obligations regarding fetal organs.
Looking the Other Way
The nexus between this unpleasant research and the nation’s foundations is broad but largely hidden. Broad, because fetal tissue is widely used by researchers, and hidden, because neither researchers nor foundations want to acknowledge the practice.
There is, however, a paper trail. Dean Alberty is a former employee of a medical supply company who dissected fetuses while working for a supplier company and later testified before a Congressional committee on what he termed as “abuses” within the business.
Alberty has made available organ order-forms revealing purchases in the 1980s and 1990s by a wide variety of universities and by foundation-supported research centers, including the Sansum Medical Research Institute in Santa Barbara, the Cancer Research Institute in Elmsford, New York, Philadelphia’s Wistar Institute, and the Whittier Institute in La Jolla, California. From 1996 to 1998, for example, the Wistar Institute was awarded at least 19 grants from private foundations totaling $2.77 million.
Of course, only a very small portion of foundations’ medical-research grants and awards are spent on fetal-tissue research. The vast majority goes to buying new research equipment, developing good nursing techniques, or extending health care to the community. Thus the Juvenile Diabetes Foundation spent less than 1 percent of its $70 million budget in 1999 on related research into stem cells taken from embryos (a spokeswoman for the foundation describes such work as “a priority area” and says the modest amounts expended reflect a lack of research projects to fund).
Still, some foundations willingly fund this controversial work, and many do not even bother to ask before issuing grants that could end up funding the use of fetal tissue or stem cells taken from embryos. Many simply have no idea where their research money ends up. The Esther A. & Joseph Klingenstein Fund has given roughly $1 million per year for medical research over the last 18 years, says president John Klingenstein. The grant requests are reviewed by an outside panel of scientists. But when asked if any of his grants paid for the use of fetal-tissue, Klingenstein threw up his hands. “I don’t know and I doubt it, and if they did I wouldn’t object.”
Similarly, the Michigan-based Kresge Foundation, does “not restrict the use of medical equipment supported by Kresge grants,” according to a statement. The Pew Charitable Trusts does not restrict its funds either, deferring ethical reviews to the NIH and to each center’s Independent Review Boards, says Pew executive Sharon Gallagher. “We’re really looking at the promise of the scientists,” says Gallagher. Yet the NIH rules, which form the basis for government grants and the universities’ independent review boards, place no significant restrictions on the use of fetal tissue.
At the research centers themselves, grant experts say they knew of no foundations that restrict use of funds because of ethical concerns over fetal-tissue and embryonic stem cells. “That’s not an issue,” says Alison Wollitcer, who solicits grants for Sansum.
Only one foundation contacted in connection with this story says that it limits its research funding; the Doris Duke Charitable Foundation, established in 1996. Because the founder did not want to fund work that might hurt animals, its money will be spent on late-stage clinical research where animals are not directly involved, says Elain Gallin, who oversees the awarding of roughly $17 million per year in medical-research grants. “It is not that we are taking an ethical stand,” Gallin is quick to say. “Many of our investigators have portions of their [clinical] research programs that start with an animal.”
When the End Doesn’t Justify the Means
On the other hand, New York’s G. Harold and Leila Mathers Charitable Foundation has funded both fetal-tissue work and stem-cell work even when such activities were deemed unethical by the federal government and the NIH. “Our attitude was that these were areas that had to be investigated . . . [despite] political issues that had nothing to do with the research questions,” says James Handelman, the fund’s executive director, who has given $200 million to various research programs over the last ten years.
Some of this money, he says, paid for a project at Yale University in which fetal brain-tissue was transplanted into Parkinson’s patients. The project, and a similar effort at the University of Denver, depended on private donations because of a ban, since lifted, on federal funding. These experiments did not cure the ailing patients, but did provide useful knowledge, he says.
The many defenders of fetal tissue research make the utilitarian claim that the moral harm of using doomed and dead fetuses is outweighed by the prospective benefits to patients. The broadest claim is made by Handelman: “The pursuit of knowledge for its own sake is the most important course we must take . . . . I find it really repulsive that certain research directions should not be approached because of ethical concerns.”
Yet even the utility of fetal tissue research is open to question. Dr. Curt Freed, at the University of Colorado in Denver, has been transplanting brain cells from fetuses into sick patients since 1988. His initial work was funded by private donors including Robert and Charles Stanton of Denver, who gave $350,000 (Charles had Parkinson’s disease). Freed also received funding from three Los Angeles-based organizations including the Seaver Institute, the Program to End Parkinson’s, and the Mitchell Family Foundation, when the ban on federal funding was in effect, and later from the NIH and the National Parkinson Foundation.
As part of his project, Freed inserted fetal brain-cells into the brains of Parkinson’s sufferers in a double-blind test of roughly 40 patients, the results of which were announced recently. The experiment was declared a disappointment by other scientists. “The fetal tissue hasn’t worked,” says Dr. Abraham Lieberman, medical director of the foundation. Currently, “I don’t know anyone would fund it” for further research, because there are more promising avenues open now, he says.
Which is just as well. Here are a few not-often discussed details of Freed’s experiment. The brains were extracted from fetuses seven to eight weeks old, and the 1,000 samples of brain-tissue were so difficult to extract that it could be done once in ten abortions, according to Freed. Three to four fetuses were needed for every transplant. That suggests that Freed’s experiments required at least 2,000 abortions, and perhaps many more. At that rate, the nation’s roughly one million Parkinson’s patients could only be cured by extracting the brains from tens of millions of fetuses.
Crossing a Bright Line
A related and equally controversial area of foundation-funded biomedical research involves stem cells. There are two basic type of stem cells; those taken harmlessly from adults, and those taken from an embryo, killing it in the process.
Researchers are increasingly excited about stem cells because they have shown the ability to convert themselves into many other types of cells. For example, the Christopher Reeve Paralysis Foundation has funded a project that recently converted a relatively few blood stem-cells into billions of healthy brain cells. Because these cells came from an adult, they raise no ethical questions, and the new cells can be transplanted back into the adult’s brain without much fear of rejection, as sometimes happens when embryonic stem cells are implanted.
But the use of embryos’ stem cells crosses a bright line in ethics; the deliberate creation and killing of human beings—albeit small, ugly, dependent, and insentient-for the benefit of others.
Once this line is crossed, it becomes much harder to limit future experimentation. For example, what law or moral tradition would stop a couple from conceiving a fetus purely for the purpose of extracting cells or organs for someone else, perhaps a sick daughter? What would stop a fertility clinic from creating batches of embryos so that prospective parents could select from among them for implantation after a low-cost genetic analysis of likely attributes? Or stop a company from mass-cloning fetuses to help test cosmetic medicines?
Once we reach that point, the distinction between life and death will have become an economic issue and a political football. And all political views can be changed as political power shifts, especially if Congress can be persuaded to shift boundaries by corporate lobbyists and eager scientists with one eye on stock options, perhaps to save hospital costs incurred by poor patients or to create new opportunities for recreational and consumer therapies.
Clearly, foundations must consider the impact of their funding on society, not just medicine and science. Research with fetal organs and embryonic stem cells is creating a fundamental danger that is usually overlooked in the noble rush to cure patients or win research funding, and researchers and foundation officials alike need to lift their eyes above their immediate goals. They need to understand the cumulative impact of their many modest, rational, good-hearted decisions to press for cures as fast as they can, regardless of ethical issues. If foundation executives ignore these ethical dangers, their grandchildren, their children’s grandchildren, and many millions of others may not be able to undo the damage to society.
Neil Munro covers the politics of technology for The National Journal.