Fetal attraction

H. Ronald Zielke is a bank director. His institution collected $1.4 million in federal funds last year-but inside, you won't find money. You'll find human tissue.

Zielke's bank is the Brain and Tissue Bank for Developmental Disorders, hosted by the University of Maryland School of Medicine. Each year it distributes some 3,000 tissue samples to researchers, collected from donors (average age: 20 to 40 years old) with neurological disorders ranging from autism to Down syndrome to Parkinson's disease. The donors' cellular material will aid researchers looking for treatments for such diseases.

According to the bank's 234-page "Catalog of Available Tissue," updated July 1, it also stores tissue from hundreds of fetuses, including those with chromosomal disorders, anencephaly (a brain malformation)-and many with no disorders at all, marked as "control" tissue and spanning ages 10 to 39 weeks.

I wanted to learn what scientists do with fetal tissue, and where they get it, so I called the bank director. The funny thing was, Zielke didn't seem to know much about the source of fetal tissue. He thought researchers occasionally acquired fetal remains directly from "some service that does terminations," such as clinics and hospitals with whom they had private agreements-but "this isn't something that is generally known."

When I asked Zielke if his bank distinguished between fetal tissue derived from abortions or miscarriages, he changed the subject: "There are very strict federal guidelines about how tissue can be collected," he said, and alluded to the filing of consent forms. These types of questions, he insisted, were outside his expertise.

Federal and some state laws permit fetal tissue research, and although some regulation of the practice exists, there appear to be gaps in oversight. Few have firsthand knowledge of the secretive networks that procure the tissue, and no central agency or organization tracks them. But an uncomfortable reality is clear: The overwhelming majority of fetal tissue used for research in the United States is obtained from aborted babies.

Federal law prohibits the sale of fetal tissue for profit but allows "reasonable payments associated with the transportation, implantation, processing, preservation, quality control, or storage of human fetal tissue." Such transactions were last in the media spotlight over a decade ago, when the pro-life organization Life Dynamics paid the employee of a fetal tissue collection organization to turn over evidence of legally questionable practices. (WORLD reported the news in October 1999 and April 2000.)

Life Dynamics uncovered confidential order forms and price lists showing that scientists at pharmaceutical companies and universities were ordering fetal parts-brains, limbs, and organs-from procurement groups that collected the tissue directly from abortion clinics. Life Dynamics said that one procurement group, the Maryland-based Anatomic Gift Foundation (AGF), made between $12,000 and $18,000 in profit during a single month.

Lawmakers called for a congressional hearing in March 2000, but when key witnesses failed to appear, and another witness proved unreliable, the matter stagnated and legislators dropped it. An FBI investigation later declared it had found no illegal activity.

Public attention was powerful, though: AGF dropped its fetal tissue business, and today the organization only accepts donors who are at least 18 years old. Two of the largest tissue suppliers in the country, who handled fetal tissue into the 1990s have also washed their hands of the trade. But that doesn't mean the practice has ceased.

An assessment published in 1995 in The Journal of the American Medical Association concluded that fetuses obtained from miscarriages and ectopic pregnancies were a "quite limited" source for fetal tissue, while another study published in Clinical Orthopaedics and Related Research in 2001, the authors noted that out of 37 donated fetuses they used for their research, 33 had come from elective abortions. According to other journal articles, very little tissue comes from fetuses dying natural deaths.

To learn firsthand how tissue makes its way to research labs, I reached by phone the executive director of an abortion clinic that allows women to donate their fetuses. Jennifer Boulanger of the Allentown Women's Center in Allentown, Pa., said her clinic supplies tissue to the University of Washington. She said her clinic is not paid for the donations, but the university provides her staff with the supplies needed to collect and ship the specimens.

In order to abide by state law, the clinic's workers don't tell women about the donation program until after they have made the decision to abort. Boulanger explained that although women must be a certain number of weeks along in their pregnancies to qualify for the program, "I would say the majority of those who are eligible choose to donate."

To ensure tissue freshness, "the specimens are FedExed overnight" to Seattle, she said. Boulanger didn't have at hand the number of specimens her clinic provides annually, but she estimated, "I don't think it's any more than 10 a week."

The recipient, named misleadingly the Birth Defects Research Laboratory at the University of Washington in Seattle, has been sponsored by the National Institutes of Health (NIH) for over four decades. It's known within the research community as a top government distributor of fetal tissue. Last year the Puget Sound Business Journal stated the lab "in 2009 filled more than 4,400 requests for fetal tissue and cell lines."

The lab's grant records indicate it received $579,091 from the NIH last year. To date, it has retrieved the products of 22,000 pregnancies. According to a description the lab provided in its most recent grant applications, an increase in nonsurgical abortion methods has "created new obstacles to obtaining sufficient amounts of high quality tissue. To overcome these problems and meet increasing demand, the Laboratory has developed new relationships with both local and distant clinics."

Demand indeed. It's 2,770 miles from Allentown to Seattle, if you take the toll roads.

Pro-life scientists don't necessarily have a problem using fetal tissue for research. A position statement from the Christian Medical & Dental Association declares, "CMDA does not oppose the use of the tissues of spontaneously aborted, non-viable fetuses, with parental consent, for research or transplantation." The problem is when tissue comes from elective abortions, and there the rules become difficult to follow.

In 1992 President George H.W. Bush attempted to establish tissue banks using only tissue from miscarriages and ectopic pregnancies, but the Clinton administration abandoned that approach the following year. Clinton also reversed a Reagan-era moratorium on funding for "therapeutic" fetal tissue transplantation that aim to cure diseases. The policy has not changed since. Aborted fetuses may be used for therapeutic purposes as long as the tissue is freely donated by women following their decision to terminate.

From 1993 to 2009, according to the most recently filed reports WORLD obtained, the NIH granted $14.8 million for therapeutic research. Two major projects included trials in which doctors transplanted brain tissue from aborted fetuses into the brains of Parkinson's disease patients. The experiments were largely unsuccessful-in fact, some patients' condition grew worse after treatment. Therapeutic funding exceeded $1 million a year from 1994 to 2001, but declined sharply thereafter, when the results of the Parkinson's trials became known.

Institutions that receive funding are expected to police themselves and assure the government they will abide by federal and state laws. During one of the Parkinson's trials, conducted at the University of Colorado, the Department of Health and Human Services learned that a woman who donated fetal tissue to the project hadn't been properly informed of the medical or privacy risks of donation, contrary to federal law. According to a 2002 determination letter, the university cooperated in resolving the problem.

The same strict requirements of informed consent don't necessarily apply to nontherapeutic research, however. And the NIH spends much more for nontherapeutic purposes: Added to therapeutic spending, the agency granted $182 million for 404 "human fetal tissue" projects between 2008 and 2010 alone. The projects studied HIV, stem cells, eye diseases, and other issues, sometimes with the help of tissue from donated fetuses-but not always: One project labeled "human fetal tissue" simply studied the safety of a drug on infants in Botswana who had been exposed to HIV in the womb.

According to a government audit back in 2000, NIH-supported researchers were acquiring about 4,000 fetal tissue samples a year at the time, sometimes paying a fee. Many ordered tissue from central supply organizations (including Zielke's bank and the University of Washington's birth defects lab), but others had arrangements with hospitals and private clinics. In 2006 a medical journal reported that the availability of all human tissues had declined due to rising procurement costs, and noted that pharmaceutical companies "now compete with academic research centers for tissues."

Fetal remains also are in demand in Britain, where, similar to the United States, no formal stats on donations are kept. In a survey published three years ago, Julie Kent, a professor from the University of the West of England, found some surprising practices: At least one abortion clinic altered its termination method in order to preserve specimens, extracting the fetus with a syringe instead of a vacuum to avoid macerating the tissue. In another case, a clinic collected cells during the abortion procedure "by inserting a cannula into the woman's uterus and the fetal heart," which, the clinical scientist involved admitted, "may hasten its death."

According to the most recent review of state law (in 2008) by the National Conference of State Legislatures, many U.S. states specifically prohibit such procedures on live fetuses. Other states don't address the subject. States vary widely in how they regulate fetal tissue research and donation, and some states apparently have no restrictions at all.

Pennsylvania's fetal donation law requires the woman to sign a consent form and mandates that anyone who handles the tissue be informed whether it came from a miscarriage, abortion, or some other origin.

But the state has exercised lax oversight of abortion laws in recent years. Investigations last year resulted in the closure of three filthy, Philadelphia-area abortion clinics-including one run by Kermit Gosnell, who was charged with murder last January for delivering live babies and then killing them. In response, Republican governor Tom Corbett, who took office in January, committed to resuming long-neglected clinic inspections.

Corbett also fired Pennsylvania Department of Health employees who had turned a blind eye to clinic problems. A spokeswoman told me by email the Health Department was not aware of any violations of the state's fetal tissue laws within the past 10 years-but noted that the new administration was reviewing all compliance matters.

Theresa A. Deisher, a scientist specializing in adult stem cells, told me stem-cell lines from aborted fetuses have been used to create cosmetic products and several common vaccines, including chickenpox vaccines: "I know the most terrific abusers of the products of abortion are academic scientists, across the board."

The nonprofit group that Deisher founded in 2008, Sound Choice Pharmaceutical Institute, stands in Seattle as a sort of rebuttal to the University of Washington's birth defects lab. "Its mission is to educate people about the pervasive use of morally illicit material in the biomedical industry" and other industries, she said.

Some, like Peg Johnston, a manager for a clinic that performs abortions in Vestal, N.Y., and chair of the Abortion Care Network, thinks that allowing women to donate their fetal tissue is both moral and compassionate. "I can tell you women do ask about it and feel that something good can come out of a difficult situation," she told me, although she said her clinic does not currently have a donation program.

"So, what's the argument? 'Oh, you're going to abort them anyway-you might as well make good use of the tissue.' Well, that doesn't justify anything," Deisher responds.

With state regulation of fetal donation spotty, Deisher fears that young women facing unplanned pregnancies may be enticed to abort with the promise that "great medical advances" will come from their fetuses: "What a terrible thing, to exploit those young women in such a vulnerable period."

But as long as fetal tissue is in demand and sparsely regulated, they'll continue to be solicited.