To secure the promised wonders of the biotech future — the miracle cures and abundant, nutritious foods — but to do so responsibly and ethically, politicians and scientists have put in place a web of laws and regulations intended to check the hubris of researchers and the greed of entrepreneurs. Often, these protections are effective. Sometimes, though, they are stronger than is useful — and sometimes they are entirely illusory.
Notable among the illusory safeguards are the supposed curbs on the use in medical research of tissue from aborted human fetuses. Recent revelations about the trade in fetal tissue not only prompted a congressional hearing earlier this month; they also revealed the relevant law to be a fabric of exemptions, obfuscations, and loopholes, with the result that the for-profit use of vibrant tissue from aborted fetuses is scarcely restricted. Because the law sounds strong on its face, and because the press and politicians are squeamish about the whole subject, the actual lack of oversight, regulation, or ethical limits on the exploitation of body parts from healthy fetuses by for-profit corporations and university researchers has passed largely unnoticed.
The law in question is the National Institutes of Health Reauthorization Act of 1993. One of its purposes was to erect a wall of anonymity between donors of fetal tissue and users, to prevent the deliberate conception of fetuses for use by family members or sale to wealthy buyers. That much seems to be working — though in the absence of oversight, no one knows for sure.
The cluster of issues surrounding the ownership of fetal tissue is more complicated. The law attempts to deal with these issues by requiring abortion clinics to secure the written permission of a mother before her fetus is handed over to scientists or middlemen and by forbidding payment for such maternal permission. One’s view of this requirement depends on one’s view of abortion.
To those who hold a pro-life view, the aborted fetus is a human person who cannot be donated by the person who chose to abort it. Meanwhile, to those who regard the fetus as only “the product of conception,” mere “fetal tissue” owned by the mother, once the mother has given her consent, the law should allow the tissue to be traded freely, like hair, semen, or blood. Moreover, under this view, the mother should get a share of any profits earned from scientists’ use of her property.
A third perspective — the one enshrined in the 1993 law — is a utilitarian mishmash of the first two. According to this view, it is only rational — and therefore moral — once an emerging human has been aborted, to exploit the remains in science and commerce. Although this rational-utility argument is popular among scientists and abortion-choice supporters, few voice it as enthusiastically as Suzanne Poppema, president of the National Abortion Federation. “If I was a sentient fetus,” Poppema told me, “I would do fetal research with myself . . . probably a whole bunch of [fetuses] would choose research. . . . [They would] cease to exist, rejoin the general energy in the universe and contribute to medical research.” In other words, the rational fetus would want it that way.
While legislators may espouse Poppema’s logic, they are much too prudent to say so plainly in public. In the 1993 statute, they gave their utilitarian intentions a pro-life fig leaf by making the sale or purchase of fetal organs a crime punishable by 10 years in jail. But they also smoothed the way for the scientists and businessmen by eliminating the mother’s property rights and denying her a share of any profits flowing from research. And they crafted the loopholes. The intra-state sale of organs, for example, is unrestricted, and “reasonable payments” are permitted for the processing and transportation of organs between states. And presto! The supposed ban is gone.
As a result, there has grown up exactly what the law’s proponents wanted all along but were loath to admit: a national network funneling fetal tissue to for-profit researchers. There is so much money to be made from biotech breakthroughs that this network has become a bustling, if mostly hidden, market where companies like Opening Lines of West Frankfort, Illinois, and the Anatomic Gift Foundation of Laurel, Maryland, will sell you fetal eyes for $ 50 and charge $ 200 to $ 1,000 for first-trimester brains.
The requirements of this sophisticated market explain another phony restriction in the 1993 law: a ban on departures from standard abortion procedures. Its advocates trumpeted this provision as protecting mothers from abortionists’ use of risky procedures designed to produce fetal tissues with high market value. Extracting the fetus intact (as opposed to dismembering it), for instance, enhances the organ-seller’s ability to secure desired parts; refraining from using poisons to kill the fetus keeps tissues pure; and delaying the killing as long as possible — to shorten the time between death and arrival in the lab — keeps organs fresh.
A few moments’ conversation with a for-profit tissue collector, however, makes plain that such departures from normal procedures are common, and a word with a lawyer shows why: The legal ban applies only to perhaps 10 percent of the fetal-tissue research funded by the federal government. It does not apply to the 800-odd yearly grants given out by the National Institutes of Health since 1993, at a cumulative cost of roughly $ 110 million, for various experimental projects involving fetal tissue. Nor does it apply to privately funded work performed in universities and corporations, whose scale is unknown because the federal government collects no data about it. The evidence, though sketchy, suggests there are thousands, perhaps tens of thousands, of fetal-organ transactions every year.
Technically, the supposed prohibition on unconventional abortion procedures applies only to a few clinical trials, paid for by the Department of Health and Human Services, in which fetal tissue is transplanted into adults. And even here, doctors may modify abortion procedures in any way they wish providing they sign a form declaring that the changes were not made “solely” to secure desirable tissue.
For what it’s worth, an opportunity to test this loophole-riddled law presents itself: Dr. Curt Freed, a Colorado scientist who has used NIH money to transplant fetal brain tissue into human patients, acknowledged to National Journal in February that his team had acquired 1,000 brain specimens extracted by abortion techniques deemed non-standard by two abortion manuals. Freed said the suction abortions were performed with tubes 10 millimeters wide. According to Poppema at the National Abortion Federation, such large tubes would increase the pain and risk to patients. Said Poppema (who herself supplies first-term aborted fetuses to NIH), “I don’t do it that way, and I don’t know anybody who does.”
The developments leading to the House hearings began when Life Dynamics Inc., a pro-life organization in Denton, Texas, started looking into this ghoulish business. Eventually representatives of Life Dynamics placed documents such as fetal-tissue sellers’ price lists in the hands of journalists and politicians, sparking a flurry of interest. Hearings ensued on March 9 before the Health and Environment Subcommittee of the House Commerce Committee. What they mainly exposed, however, was the utter ineffectuality of the existing legal restrictions on the fetal-tissue trade.
At the hearing — the first public investigation of the commerce in fetal tissue since its beginnings in the 1960s — interest focused on the work of one Dr. Miles Jones, head of Opening Lines. The greediest of the organ-traders, Jones had been foolish enough to boast before 20/20’s hidden camera that he sold organs for whatever the market would bear; ABC aired the 20/20 feature on March 8. Democrats and Republicans joined in asking the Justice Department to arrest him, and he is now being sought by the FBI.
But Dr. Jones is likely to be protected from any punishment remotely resembling the 10-year prison term allowed under the law: His friends in the prestigious universities and politically powerful biotech corporations that were his clients will see to that. Because the law bars the purchase as well as the sale of organs, all these buyers are theoretically on the same legal griddle as Jones. If federal authorities fail to charge them, Jones can tell a judge that he is a victim of selective prosecution. The likely result is a plea bargain giving Jones a token punishment and keeping the well-connected buyers’ names out of the public record. In the future, sellers will be more circumspect — like LeRoy Carhart, the operator of an abortion clinic in Nebraska, who gave second-trimester fetal brains to researchers at the University of Nebraska. In exchange, Carhart received a reasonably prestigious title at the university, but because the organs were conveyed within Nebraska, the transaction did not violate the 1993 ban on the tissue trade.
One might have thought that all this evidence would provoke bipartisan outrage in Congress. Instead, the pro-research alliance of some Republicans and almost all the Democrats retained the upper hand. In exchange for a big concession — the pro-research faction reluctantly allowed the March 9 hearing to be open to the public — pro-life Republicans were forced to promise not to name names at the hearing (other than Jones) or to ask questions about the tissue trade generally. Thus, the pro-research members, led by Henry Waxman (D-Calif.), had a free hand to portray Jones as the single bad apple in an otherwise excellent barrel.
They further undermined prospects for a broader inquiry by attacking the credibility of a witness called by pro-lifers, researcher Lawrence Dean Alberty, who had dissected dead fetuses for Jones’s company as well as for the Anatomic Gift Foundation before assisting Life Dynamics Inc. with its inquiry. Alberty had partly retracted or caviled some of his earlier statements, and he admitted accepting $ 20,000 from Life Dynamics Inc. — to cover his time and expenses during the investigation. Alberty’s retraction, interestingly, had come after his former employer, the Anatomic Gift Foundation, had threatened to sue him for violating the non-disclosure terms of his employment contract — the kind of treatment that normally rallies Democrats to a whistleblower’s defense. Still, Alberty stuck to his main story: An abortionist once delivered two live human fetuses to his vivi-section table. Alberty’s other former employer, the fugitive Dr. Jones, saw his chance and fired off a letter asking the FBI and Janet Reno to investigate Alberty for “corporate espionage.”
Given the flimsiness of the 1993 law and the strong political support on Capitol Hill for unrestricted research, the reality is that, when it comes to the use of body parts from aborted fetuses, all is permitted. In effect, the medical community and its overseers at the National Institutes of Health and in Congress have allied themselves with abortion defenders and biotech businesses to resolve an ethical conflict with a lawyer’s trick: The mother’s signature on a consent form wipes away all scruples. Thus a moral dilemma is being converted into a private choice and a corporate opportunity.
One reason this can happen is that the national media support this unseen conversion; they just don’t want to admit it, any more than the politicians do. Least of all do they want to alarm members of the public, who would not believe what their government is condoning in their name. Then again, perhaps we modern citizens — oops, I mean health care consumers — do know at some level and have exercised our right to choose to ignore this unpleasant business, bent as we are on enjoying the medical breakthroughs that fetal-tissue researchers promise.
What seems undeniable is that ethical researchers should be willing to submit their work to public review. Skilled researchers, moreover, if motivated by conscience or required by law, could minimize their use of fetal tissue and perhaps obtain all they really need from fetuses who have died naturally. They could maximize their reliance on animal tissue and on the human cells and tissue now grown or stored in commercial tissue-banks — even if they had to pay for it out of future profits.
These and other restrictions, including an international agreement, deserve to be considered, lest we autonomous citizen-consumers, by defining the very youngest humans as commodities, take a step closer to converting ourselves into commodities. If we take that step, the time will soon come when we in turn are judged surplus by market forces. But by then, our experiment in commodification will be too far advanced for anyone to appeal to antiquated notions of citizenship and humanity. By then, our fellow consumers will no longer grasp the unscientific duty to protect life.
Neil Munro covers the politics of technology for National Journal.
