Is it ethical to experiment on aborted humans?
Nov 05 Investigate, also reprinted as part of the book Eve’s Bite by Ian Wishart
It’s the hidden side of medical research. A massive industry harvesting pieces of dead children for experiments, or transplanting into animals. IAN WISHART discovers the University of Auckland has imported body parts from American babies for a research project, and asks some hard questions:
There are puddles of water in the gloomy corridors of Auck-land University’s School of Medicine, leftovers from a spring rainstorm and some bad building maintenance on this grey September afternoon. This nondescript urban edifice, now in the shadow of the new Auckland Hospital extensions, houses dark secrets. Or so Investigate has been told.
“They’re doing an undergraduate presentation next week in the Department of Optometry and Vision Science,” a source in Auckland’s optometry community confides in a cryptic email. “Thought you might be interested to investigate a research project involving tissue from aborted fetuses.”
Optometry. Eye doctors. Hardly the first branch of medicine that springs to mind as the cutting edge of macabre experimentation. But inside the Cole Lecture Theatre, safely sheltered from the weather and the waterlogged corridor, fifty or so medical students have filled the room almost to capacity as teams of fourth-year undergrads present the results of this year’s main research projects.
An American woman holds court, a scientific Mistress of Ceremonies taking clear pleasure in parading her protégés to their medical colleagues as they make audio-visual presentation after presentation. She is Dr Keely Bumsted O’Brien, and this is her baby, so to speak.
Across the road, in the big hospital’s emergency rooms and oncology units, specialists, intensivists, nurses and registrars are working frantically to save the living. Here, in the School of Medicine, it turns out O’Brien’s team has been dissecting the dead. And not just any dead.
“The title of the project,” tipped our source, “is ‘Photoreceptor-associated gene expression in human fetal and embryonic chicken retina’. As far as I am aware this project is unlikely to have received regional ethics approval from the Ministry of Health. The tissue has been obtained from elective abortions in the United States and was transported here for the experiments. This may be the first research of its kind in New Zealand and I am sure the public are quite unaware of it.”
Just how did body parts from a group of aborted American infants end up in New Zealand for students to conduct experiments on? To find the answers, we began investigations in the United States, and a controversy that blew up there six years ago.
It was an interview that shocked America. An Insider, spilling the beans on massive malpractice to a reporter on ABC’s 20/20. Only this time, it wasn’t Big Tobacco in the gunsights, it was the US abortion industry, exposed as harvesting the organs from aborted babies. According to former abortion clinic technician Dean Alberty, clinics were harvesting eyes, brains, hearts, limbs, torsos and other body parts for sale to the scientific market: laboratories wanting to test new drugs or procedures, or researchers trying to find the causes of genetic disorders or discover new ways of treating disorders like Parkinsons.
To make matters doubly embarrassing for authorities, the trafficking was taking place inside abortion clinics run by Planned Parenthood, the US affiliate of New Zealand’s Family Planning organization.
Alberty worked for a Maryland agency called the Anatomic Gift Foundation, which essentially acted as a brokerage between universities and researchers seeking body parts, and the abortion clinics providing the raw material. Alerted by the clinics about the races and gestations of babies due to be aborted each day, AGF technicians would match the offerings with parts orders on their client lists. Alberty and his colleagues would turn up at the abortions that offered the best donor prospects to begin dissecting and extracting what they needed before decay set in.
“We would have a contract with an abortion clinic that would allow us to go in…[to] procure fetal tissue for research. We would get a generated list each day to tell us what tissue researchers, pharmaceuticals and universities were looking for. Then we would go and look at the particular patient charts—we had to screen out anyone who had STDs or fetal anomalies. These had to be the most perfect specimens we could give these researchers for the best value that we could sell for.
“We were taking eyes, livers, brains, thymuses, and especially cardiac blood…even blood from the limbs that we would get from the veins” he said.
Alberty told of seeing babies wounded but alive after abortion procedures, and in one case a set of twins “still moving on the table” when clinicians from AGF began dissecting the children to harvest their organs. The children, he said, were “cuddling each other” and “gasping for breath” when medics moved in for the kill.
Alberty had been asked by a pro-life group, Life Dynamics, to provide information about activities in the clinics, and the issue caused enough national scandal to see an episode of ABC’s 20/20 devoted to it in March 2000.
On that programme, as in this magazine, the imagery was highly sanitized so as not to upset sensitive viewers. The closest 20/20 got to screening images of trafficked human fetal tissue was a pea-sized fragment of unidentifiable tissue in a glass Petri dish.
Life Dynamics founder Mark Crutcher later told media:
“We are sympathetic to the explanation offered by the ABC producer who told us after the show that the network could not broadcast footage of dismembered babies, baggies full of tiny human eyes or any other accurate footage of the ‘commodity’ being sold by the baby parts merchants. But this should have been stated in the programme. Showing scientists poking at slivers of flesh in a Petri dish through a microscope was deceptive and it dehumanizes this debate.”
In America, late-term abortions are permitted, even up to 30 weeks gestation. It’s a three day procedure and involves forcing the mother to go into labour but killing the baby with a spike to the base of the skull before it leaves the birth canal. Even so, according to Alberty, it wasn’t unusual out of the 30 or 40 late-term abortions each week to see several babies born alive on the operating table before clinicians could perform the procedure.
“They were coming out alive. The doctor would either break the neck or take a pair of tongs and basically beat the foetus until it was dead.”
Alberty’s testimony was verbal, and in many cases it was challenged by abortion providers who questioned his motives and accused him of “embellishing” the sordid details of the abortion industry. But Alberty the whistleblower wasn’t alone. Another former clinic manager, Eric Harrah, gave a video interview disclosing live births as the abortion industry’s “dirty secret”:
“It was always very disturbing, so the doctor would try to conceal it from the rest of the staff.”
One incident in particular haunts him. The clinic had begun inducing a woman 26 weeks pregnant, but sent her overnight to a nearby motel to await the full procedure in the morning. Instead, in the middle of the night she gave birth to a child and was brought back to the abortion clinic with the baby wrapped in a towel.
“I was in the scrub room when I saw the towel move,” says Harrah. “A nurse said, ‘Eric, you’re just tired. It’s three in the morning.’ Then we both looked and a little baby’s arm raised up out of the towel and was moving like a newborn baby. I screamed and ran out. The doctor came in and closed the door and when we went back in to process the baby out of the clinic into the lab, [the baby] had a puncture wound in his chest.”
In the United States, trafficking in baby parts for profit is a criminal offence. But to get around the problem, universities and researchers pay a fee – not for the parts themselves but for the “cost of extraction”. Thus, there are different fees depending on the amount of work involved. And shipping and handling is extra.
Harvesting fetal tissue is not yet illegal in the US. In fact, the programme at five major universities including the University of Washington is part funded by the US National Institutes of Health. It is the University of Washington that has been supplying Keely Bumsted O’Brien at the University of Auckland, with some of her eyeball retinas of aborted children.
The reality of the ethical boundaries wasn’t lost on the stu-dents gathered in the Auckland School of Medicine lecture theatre when fourth year undergrads Tim Eagle and Kimberly Taylor wrapped up their presentation on genetic testing the eyeballs of chicken embryos and human fetuses. They told the audience they’d used tissue from a 10 week human embryo, a 12 week and a 16 week foetus. When Keely Bumsted O’Brien called for questions from the audience, the first was an ethical one, from a female student somewhere up the front of the crowded auditorium. Had Eagle and Taylor, she wondered, run their project past the Auckland University Ethics Committee?
“We have ethical approval under Keely as referee, which is obvious by itself. Her current ethical approval worked for what we were doing so we basically used hers, which was obtained as far as we’re aware from America,” Taylor responded.
When Investigate rang O’Brien to clarify, she confirmed her teams were working on something big.
“There’s a large ongoing project, and I don’t think I need to tell you when and where I actually do specific things. Are you aware that importation of human tissue into New Zealand does not require any sort of permit?,” she countered.
Apparently, she’s right. Under current New Zealand law, you can import body parts to your heart’s content as long as you do it in a biosafe manner. But what about seeking approval from the Ministry of Health’s Northern Region Ethics Committee? Surely there must be laws governing the carrying out of experiments on aborted human infants in the name of science?
“No,” says O’Brien emphatically, “because you’re not required to, because it’s tissue, not alive.”
In other words, thanks to a loophole in New Zealand law, it is perfectly legal to conduct experiments on aborted human embryos. For all we know, there may be dozens of experiments being carried out on aborted children in research labs throughout New Zealand. The fetal eyes, O’Brien says, arrive in the country having been “snap frozen cryogenically” just minutes after death, then placed in formaldehyde.
So who supplies Auckland University with infant eyeball retinas? O’Brien repeatedly talks of the “organizations” that supply her, but names only one, the University of Washington.
“These organizations, like for example the University of Washington has a tissue programme. The UOW oversees the collection of tissue, they have their own ethics committee. So they have to be overseen by another committee. So to use fetal human tissue in NZ I have to go through the local ethics committee, and in addition the tissue that I’m gathering has to be gathered under a separate ethics protocol. That ethics protocol is overseen by the ethics committee that’s on site.”
When Investigate suggests that the body parts could be coming in without mothers even realizing their aborted baby had been harvested moments after death, O’Brien is outraged.
“Working with human fetal tissue is not taken lightly. You have to have respect for the donation of the tissue. Now the child obviously cannot give consent, it’s the mother that’s giving consent.”
“Do you think they’re asking these women, ‘do you mind if we keep the baby for medical research?’,” we ask.
“You absolutely have to! You absolutely positively have to! Do your homework man! You simply cannot take fetal tissue from an aborted foetus without informed consent from the mother. Oh my goodness, I’m shocked to hear you suggest that. I’m upset and shocked that you suggest that. Totally off base.”
But is it really off base? O’Brien insists that women seeking abortions are asked to sign consent forms authorizing the use of their dead babies for medical research. It leads to a terse exchange with Investigate.
“There is an informed consent form that the mother signs. She is not coerced, she is not paid any money. She is informed of all of her options. That informed consent was part of my approval that was produced and shown to the ethics committee here [in Auckland].”
Great, we thought. So O’Brien actually knew the names of the mothers involved and had presented copies of their consent to her peers?
“Absolutely not! That is so unethical! All I know is that the tissue was donated by the mother, and the mother has signed an informed consent form.”
But hang on, we asked, how do you know, if you don’t have a signed form with a name on it?
“I don’t keep those records on site.”
No, but somebody must.
“Yes, they are kept by the organization that coordinates the donation.”
So what, physically, does O’Brien have that proves there’s been informed consent from the mother?
“You cannot collect the tissue without informed consent from the mother. It is unethical for the organization that coordinates the collection of the tissue to provide me with any sort of information that might link it back to the mother.”
In other words, there’s no signed paperwork for O’Brien or the ethics committee to see. It’s done on trust. To Investigate’s knowledge, O’Brien has never seen a signed informed consent form.
So for all you know, we pushed her, it could be somebody in an office somewhere chucking out these forms on a word processor saying ‘yeah, we do all this’ and of course they don’t. “If you’ve never seen a signed copy, how do you know?”
And when Investigate went searching, those are exactly the kind of discrepancies we began to find. Like this extract from the Seattle Post Intelligencer newspaper in the wake of a congressional visit to the University of Washington lab:
“Women who agree to the use of their aborted babies for research sign a simple “informed consent” document at the abortion clinic, which includes no information on where the particular “donation” will be sent or how it will be used. This oversight is inconsistent with the regulation requiring “informed” consent, according to a physician familiar with research protocols, and could be problematic for the University of Washington laboratory.”
The newspaper also discovered other discrepancies in the University of Washington paperwork, such as the University letting outside labs fill in forms instead of doing the paperwork themselves. Nor was the University of Washington doing the actual organ harvesting at the abortion clinics, so the University itself was one step removed from the informed consent process in terms of verifying whether the consent was genuine. In other words, the University of Washington’s ethical oversight could not have included whether the tissue was harvested ‘ethically’, because the University has never been in a position to know.
The congressmen went away sufficiently concerned that six separate pieces of legislation were drafted to combat the harvesting of tissues. But with a change in administration, those bills went onto the backburner.
Then there’s the issue of the other ‘organisation’ O’Brien refers to but doesn’t name. Investigate traced two scientific papers published by O’Brien in the past 24 months. One, “Expression of photoreceptor-associated molecules during human fetal eye development”, was published in the journal Molecular Vision in 2003 and can be found on the internet through a Google search. In the paper, O’Brien discloses she used body parts supplied by the University of Washington, but also by a private broking firm like the controversial Anatomic Gift Foundation referred to earlier; this one is named Advanced Bioscience Resources, or ABR, and is based in California. After Anatomic Gift Foundation was sprung thanks to the testimony of insider Dean Alberty, Advanced Bioscience Resources moved to fill the fetal tissue power vacuum. In an industry now estimated to be worth around $2 billion globally, ABR is believed to be a major player, particularly as it’s prepared to supply organs harvested from second trimester late-term abortions, which the University of Washington refuses to do.
Investigate has confirmed that an early second trimester baby was dissected for the Auckland University study, making ABR the likely supplier to O’Brien. And O’Brien has used babies up to the fetal age of 22 weeks, according to her published studies.
Her Molecular Vision paper describes how experiments were “prepared from snap frozen intact human fetal eyes ranging from fetal week 9 to fetal week 19…labeling was performed in a large number of eyes within an age group.”
There is no disclosure in the internet version of the paper how many eyes were harvested for the experiments. At least ten babies from fetal weeks 9 to 22 are known to have been harvested for O’Brien’s second scientific paper we found, published in Investigative Ophthalmology and Visual Science in August 2004. Again, suppliers were both ABR and the University of Washington. One paper on eyes supplied by ABR describes how the baby’s eyes are “enucleated” from the skull – medical talk for being scooped out with a knife.
Although she was working at the University of Auckland at the time, O’Brien has told Investigate the experiments detailed in her published papers were carried out “elsewhere”.
And what do we know of Advanced Bioscience Resources? According to O’Brien, her suppliers operate with transparent ethical rules and committees. But Advanced Bioscience Resources appears far from transparent. At least one American news report says the company has refused to comment on its body parts trade, making it impossible to ask whether ABR’s practices comply with federal US law.
“We’re a biotechnology firm, we don’t talk to the press,” a company spokeswoman is quoted as saying on another occasion.
Investigate has confirmed that ABR supplied aborted baby brains to be injected into mice, as part of experiments creating a part human/part mouse chimera. The genetically-engineered mice have been given – all courtesy of aborted fetuses from ABR – a human immune system, a human fetal thymus, liver and lymph node. The mice are then infected with HIV as part of AIDS research.
The US National Institutes of Health, which funded the grisly harvesting and experiment, has refused to provide any written proof that ABR holds informed consent forms, nor has the NIH confirmed that mothers were told by ABR that organs from their dead babies would be transplanted into genetically-engineered mice.
ABR has also supplied baby hearts for transplantation into pigs, and fetal stem cells.
We asked O’Brien whether she felt modern scientists were stepping into a dark pedigree.
“Do you see a correlation between the boundaries of science and experimentation on humans in this area, and the dreams of Nazi Josef Mengele and others back in World War 2 and the kind of experiments they were conducting?”
Mengele had taken particular interest in dissecting live infants for medical experiments.
“You see no correlation?”
There was a pause as O’Brien drew in her breath. “What you’re trying to get me to say is that research on human fetal tissue is morally and ethically wrong, and I’m not going to say that. Because obviously I’m working on the tissue. I think the information to be gained is extremely valuable and it’s not something taken in lightly. I don’t think the information I use can be interpreted and used for eugenics. The reason that we have ethics committees is so we don’t have a scientific free for all.”
Other ethicists, like Paul Ramsey in the US, disagree however.
“Far from abortion settling the question of fetal research, it could be that sober reflection on the use of the human foetus in research could unsettle the abortion issue.”
Are human children, ask ethicists, any less-deserving of protection from medical experiments and execution than animals?
Pittsburgh-based researcher Suzanne Rini, who interviewed Ramsey and whose 1995 book Beyond Abortion: A Chronicle of Fetal Experimentation brought to light a body parts trade that’s existed since the 1950s, believes the very fact that scientists need the elixir of youth from fetuses may be the ethical catch-22 that kills the abortion industry. On the one hand, she says, medical researchers try to argue the foetus is not a live person. On the other, whether it’s a cure for Parkinson’s, diabetes, Huntington’s, MS or a range of other disorders, medical researchers claim the life in fetuses is the only thing that can save adults. But only if you kill the foetus first.
University of Auckland’s Deputy Vice Chancellor, Research – Tom Barnes – says it is ethical under current NZ law to harvest organs from fetuses for the sake of improving the lives of adults.
“As you know [Keely’s] research is looking at eyes. She’s trying to solve the problem of macular degeneration which is a disease that affects 60% of more of people who are 70 years old or over. She’s also trying to solve some problems to do with eye disease in younger people as well.”
It is a modern, relativistic idea that you can sacrifice the few for the good of the many. Indeed, this was one of the justifications Hitler used in whipping up hatred against Jewish, Gypsy and gay minorities. In 21st century form, the argument is more subtle: that if a cure for crippling diseases can be found by harvesting fetal organs from abortions, or growing human embryos in the laboratory for stem cell harvesting, then the deaths of those infants are justifiable because of the perceived greater good to the community at large.
Indeed, O’Brien makes a similar appeal when we ask what the ultimate benefit of dissecting children’s eyeballs is:
“You achieve knowledge, so that you can start to try and find therapies to help people regain their vision, or intervention so that you can help people who have congenital abnormalities that we might be able to fix them.
“Obviously I don’t think there should be a blanket ban on the use human fetal tissue because I think the information that you get out of the use of human tissue is very valuable in trying to help people.”
But is that a valid line of reasoning that justifies made-to-order abortions?
At the Nuremberg War Crimes trials, evidence was presented of horrific scientific experiments being performed on cap-tives in the concentration camps. The Nazi medics on trial attempted to justify it by saying the test subjects were due to die anyway and the knowledge gained would benefit the rest of humanity.
Needless to say, the Nazis were shot down in the courtroom (and later simply shot outside it) and Nuremberg issued a declaration condemning the role of the medical profession in experimentation and slaughter of innocents.
University of Auckland’s Keely Bumsted O’Brien resents modern scientists being likened to Hitler’s gruesome genetic engineers, and points out that when Germany’s Max Planck Institute for Brain Research recently discovered it possessed the brains of many Down’s Syndrome people slaughtered by the Nazis, the Institute did the decent thing.
“Rather than use [the brains for research], it was the decision of the Director to give those brains a decent burial. Which one could argue might be the ethical way to do it, if they were gathered by the Nazis in an unethical way dealing with eugenics. Now I don’t compare what I do to eugenics.”
But Investigate challenged O’Brien on her example.
“There is an arguable case that in 50 or a hundred years time society will look back and say the current Western practice of mass abortion was a similar sort of thing to what the Nazis did and they’ll look at it the same way, what’s your response to that?”
“I don’t think they will,” exclaims O’Brien. “And I think we take much more care in how we carry out the research than the Nazis did.”
It is clear to Investigate after an hour long interview with O’Brien that she is sincere in her beliefs, and she makes special mention of the fact that she respects the humanity of the tissue. She also attends an annual memorial service, she says, that the medical school has for the cadavers and tissue used during the year. Nonetheless, our inquiries into the baby parts business give no reason to think that the harvesting of organs in America from dead or dying infants is done more humanely than the Nazis did.
For a start, the death toll alone from abortion far eclipses anything Hitler was able to achieve. In fact, one estimate of the abortion tally in the West in the past 30 years is that more than 58 million lives have been lost. Once you kick in the figures for the rest of the world including China, more people have been killed by abortion in the past 30 years than in all wars in recorded history. For the record, international studies like a 1999 paper from International Family Planning perspectives suggest 46 million lives a year are taken throughout the world.
At the Mayfair Women’s Clinic in Aurora, Colorado, staff admitted under cross examination in court that they had so many aborted babies to get rid of that clinician Dr James Parks used to put the bodies of larger babies (up to week 22) into meatgrinders so the remains could be reduced to the consistency of toothpaste and flushed down sinks.
Leaked documents from inside abortion clinics have hit the headlines across the US, and they make dark reading. They’re order forms from scientists to agencies like Advanced Bioscience Resources, instructing what parts they need and how to get them.
“Dissect fetal liver and thymus and occasional lymph node from fetal cadaver within 10 (minutes of death).” “Arms and legs need not be intact.” “Intact brains preferred, but large pieces of brain may be usable.”
Or this, from a scientist studying the “Biochemical Characterization of human type X Collagen,” who requests “Whole intact leg, include entire hip joint, 22-24 weeks gest.”
The harvesting technician is asked to “dissect by cutting through symphasis pubis and include whole Illium [hip joint]. To be removed from fetal cadaver within 10 minutes.”
Another, from University of Colorado’s Gary J. Miller, a professor of pathology, seeks the prostate glands of 24 fetuses from the first and second trimesters. The glands, he says in his request to Anatomic Gift Foundation on November 10, 1998, are “To be removed and prepared within 5 minutes … after circulation has stopped.”
According to World magazine in the US, which broke the story, other specifications state that they are to be “preserved on wet ice,” “picked up immediately by applicant,” have “low risk no IV drug abuse or known sexually transmitted diseases,” and no prescription medications used by “donor” mother. The contract is signed both by Dr. Miller and, for the Regents of the University of Colorado, by “Sharon Frazier, Director of Purchasing.”
O’Brien refuses to believe there is anything dodgy about the fetal tissue harvesting operations in the US.
“I have to put my faith in the fact that the organizations that I’m obtaining tissue from are obtaining it in an ethical manner.”
But let’s look at that more closely. The American Society For Cell Biology, an association of cell biologists, lobbied hard against regulating the fetal tissue harvesting industry, including a suggestion that researchers should have to “verify that the tissue was obtained properly”. This condition, and others, were regarded as too onerous for the scientists to accept.
None of the many articles and papers Investigate has read on the issue suggest that the abortion clinics or tissue har-vesting organizations are subject to ethical oversight com-mittees. In fact, the Anatomic Gift Foundation, which is similar to ABR, openly puts the onus on its clients – the researchers – to get ethical approval before they make an organ purchase application. Investigate has found no evidence that AGF or ABR are themselves audited by anyone.
And how ethical is the behaviour of another big fetal tissue provider (until it was sprung in the ABC 20/20 programme), Opening Lines?
A division of Missouri and Illinois-based Consultative and Diagnostic Pathology Inc, Opening Lines made no bones about the fact it was in business to make money. A 20/20 producer, posing as a potential investor in the 11 year old company, visited its founder, pathologist Dr Miles Jones.
Jones, unaware he was being recorded on a hidden video camera, explained how his company obtained fetal parts from clinics across America for shipment to research labs.
“It’s market force,” Dr. Jones told the producer about how he sets his prices. “It’s what you can sell it for.” He said he was looking to set up an abortion clinic in Mexico in order to get more fetal tissue by luring women in with cut-price abortions.
“If you control the flow — it’s probably the equivalent of the invention of the assembly line.”
As to the financial benefits of his business, Jones was brutal about the demand from researchers: “If you have a guy that’s desperate for, let’s say, a heart, then he’ll pay you whatever you ask,” he said.
“That’s trading in body parts. There’s no doubt about it,” Arthur Caplan, director of the University of Pennsylvania’s Center for Bioethics, told the Alberta Report newspaper after reviewing Jones’ statements.
The Opening Lines corporate brochure reads more like a supermarket advertisement than an ethical, dignified approach to the death of a baby.
“The freshest tissue prepared to your specifications and delivered in the quantities you need it.”
Despite compiling a baby parts price list and charging fees, an FBI investigation concluded that Opening Lines had broken no laws in what it had done and how it had done it. So if the American ethical rules are tough, there’s been no evidence of it to date.
Then there’s the question of whether the University of Auckland Human Ethics Committee is tough enough in demanding proof of informed consent in cases like O’Brien’s.
You’ll remember O’Brien is insistent that she could not provide the University of Auckland with copies of the informed consent because it would be unethical for her to know the identities of the mothers who’d signed them.
“It is unethical for the organization that coordinates the collection of the tissue to provide me with any sort of information that might link it back to the mother.”
Contrast O’Brien’s statement with this extract from the ethical guidelines imposed on fetal tissue research by the University of Texas at Houston:
“An investigator proposing to use fetal tissue must complete an application form for full [Ethics Committee] review and approval. The application must include a copy of the consent form used to obtain consent for donating the tissue. [Ethics Committee] must be assured that the woman donating tissue has been given an opportunity to understand the procedures, any possible risks to her privacy and well-being, and to assure that she has an opportunity to give free and informed consent to the donation.” [emphasis added]
Additionally, the University of Texas requires that the consent form cannot be generic, and must relate to the actual research project that is planned, with “a short description of the reasons for the research.”
While O’Brien claims it would be unethical for her to know the donor or talk to them, the University of Texas requires its researchers to include on the woman’s copy of the consent form “the name and telephone number” of the researcher, so that the donor can make contact, ask further questions, and even withdraw their consent.
Implicit in this is that the researcher must take ethical responsibility for the collection of the tissue, and should know who the donor is. Both of these aspects corroborate the comments made about the flawed informed consent procedures of the University of Washington earlier in this report.
It is clear from O’Brien’s interview with Investigate that none of the women donating their dead babies’ eyeballs would have been able to reach her to withdraw their consent or ask questions.
But Investigate didn’t leave the issue there. Despite the fact that Advanced Bioscience Resources refuses to give media interviews, we obtained the cellphone number of its President, Linda Tracy, and we rang it. What we obtained is a world exclusive:
“We’re just doing a story on fetal tissue use over here in NZ, and one of the suppliers is ABR, and people tell us you guys are subject to ethical committee oversight, would that be right?”
“Who are you with again?”
“OK, I don’t give any information to magazines or interviews to anyone.”
But just as Tracy was about to do what she’d done so many times before to American journalists – hang up – we reminded her that negative publicity could affect her business, and she had a responsibility to put her side of the story.
“In this particular case, the researcher says that the suppliers such as yourself are subject to ethical committee oversight. I’m trying to find out who is responsible for ethical oversight in terms of ABR, would it be you or is it the researcher who must seek approval?”
“What committee do you people report to, how does it work?”
“Well, we are overseen by the IRS, the Internal Revenue Service. As a non-profit organization we have guidelines to abide by, but that’s about the only regulatory committee that we are subject to.”
So much for ethical oversight. Is there, we asked, an external ethical committee that Advanced Bioscience Resources reports to or which oversees its baby harvesting operation?
What about the actual extraction of eyeballs and other fetal tissue, who carries that out?
“It is our responsibility to collect the tissue,” confirms Linda Tracy.
“So you’re in control of the process all the way through?”
This ‘ethical oversight’ is getting more fascinating by the minute. Which part of the process, we asked, was outside ABR’s control?
“The [abortion] clinic consents the patient.”
“And then the clinic provides you with the consent?”
“Is there any possibility that the clinic may not properly consent the patient, the clinic may take the view ‘we’re never going to see the patient back through here, they’re never going to know’, and they’ll just write out the forms. How do you know the clinic is doing the informed consent properly?”
“We just have to trust them,” says ABR’s Linda Tracy.
Don’t forget, the abortion clinic gets paid money for providing ‘office space’ to the harvesters, and has a financial interest in the success of harvesting as an industry.
Keely Bumsted O’Brien may have expressed “shock” and outrage when Investigate suggested the harvesting programmes could be ethically shonky, but the evidence now appears pretty damning.
Not only is there no ethical oversight of the abortion clinics, there is none on the companies doing the fetal tissue harvesting either. All the way through, the process appears to be done purely on “trust”.
And just how good is the actual informed consent process that the ethics committees rely on? According to the University of Texas, informed consent forms had to spell out what kind of research was specifically planned.
We asked ABR whether, for example, donating ‘mothers’ would be told their child’s organs would be used for eye studies, or for transplantation into animals for experiments?
“The law requires that we always state that it is possible that it may be used for important stem cell research, and if the patient asks specifically what it might be used for then that is explained to her verbally. The consent itself is somewhat generic except for the pluripotent stem cell use.” [our emphasis]
Based on Linda Tracy’s interview with Investigate, it now appears certain that no donating mother gave informed consent for her baby’s body parts to be transplanted into human/mouse hybrids, or injected into the veins of rats. Little wonder the US Government National Institutes of Health refused to release informed consent forms from ABR regarding those projects.
There was another aspect we wanted to clarify: O’Brien’s insistence that it would be unethical for her to see a donating mother’s consent form.
“Are those forms available to researchers if they need them for ethical approval?”, we asked Tracy.
Naturally, all these discoveries raised more questions than answers. We went back to the University of Auckland’s Tom Barnes, the man the university’s ethics committee reports to.
“Keely does have ethical approval from the University of Washington to do this and that ethical approval is current and has gone through their prescribed procedures.”
Barnes explained that the project is a collaboration with the University of Washington’s Anita Hendrickson, who was apparently the principal point of contact with tissue harvesters.
But Barnes was not aware that University of Washington’s ethical procedures were found wanting, as referred to earlier in the Seattle Post-Intelligencer report.
“I’m sorry, I can’t comment on that,” reflected Barnes. “I’d have to know exactly what the situation is before I comment.
“In terms of what this university knows, we have the ethical approval from Washington, and also the proposal has been examined by our ethics committee de novo [as if for the first time] as well.”
When we pointed out that neither University of Washington nor ABR had directly sought informed consent from women and instead relied on abortion clinics to get it, Barnes said the University of Auckland had to trust the paperwork in front of it.
“As I say, I understand the ethical approvals were granted over there and we have paperwork that backs that up. Whatever happened over there I can’t comment on.”
We explained to Barnes the stringent ethical conditions imposed on informed consent forms by the University of Texas, and asked whether he was satisfied that the University of Auckland’s ethical rigours were tough enough.
“Let me say that our ethics committee operates under guidelines that are set nationally, and those guidelines are approved by the HRC. I believe we have an ethics committee that is absolutely committed to research being done in the correct way and I believe they do an excellent job of that.”
Having said that, says Barnes, the University of Auckland will ponder Investigate’s allegations that the US ethical process is flawed.
And what about the overall ethical issue of whether human infants should be experimented on at all? Barnes says it is legal under current New Zealand law, and proposed new rules to control it have not yet come into effect. When we again raise the comparison with Auschwitz, Barnes rejects the analogy.
“I think that’s entirely inappropriate.”
“Well it’s a totally different situation.”
“If you accuse, by default, Keely of behaving like somebody in a Nazi death camp, I do think that’s unfair. If the issues you’ve raised about ethical approval in America are resolved satisfactorily, if the mothers are in fact giving informed consent for the use of their tissue, that’s really quite different to somebody who’s in a Nazi death camp being experimented on,” says Barnes.
But doesn’t the answer, we pointed out, really turn on whether the fetus is the ‘mother’s tissue’ to dispose of in the first place?”
“We make sure we fall within the ethical guidelines as they are laid down,” says Barnes. “Whether those guidelines are flawed or not or whether they’ll change or not is a matter for the future, and in the meantime we have to operate within those constraints.
“To be honest with you, I think that that [whether a foetus is an individual human life or just part of the mother] is a broader debate which would have to take place in the country at large.”
It’s a good point. Researchers talk of the baby simply being “the mother’s tissue”, but advances in DNA mean we now know the foetus has its own unique DNA and tissue, and is not merely an extra piece of maternal flesh. The mother, in real scientific terms, can no more “own” the foetus on such grounds than she can “own” her older children and consent to their execution and vivisection. Is it time for renewed public debate?
It’s an argument that the University of Auckland is sympathetic to.
“You have to sort of balance the tremendous potential of this research to solve some absolutely debilitating problems – people being blind for years and so on. So we do the best we can at balancing all these factors within the guidelines and the law as it stands, and we contribute to and take part in that ethical debate and we will abide by what comes out of that ethical debate. We’re not trying to cover anything up.
“If the result of that debate that you’re referring to is that it’s unethical to work with this kind of tissue, then we wouldn’t do. No question.”
Another who shares that view is Steven Bamforth, a Canadian geneticist harvesting fetal tissue at the University of Alberta for his research colleagues. Every day, his job entails sifting through aborted remains, searching for recognizable eyes, hearts, livers and other organs sought after by universities.
“The humanity is always before us,” Dr. Bamforth told Alberta Report magazine recently. “If society said this research is not acceptable, of course, we would immediately desist. It’s not something that I do happily.”
Nor does the “helping older people with their health” excuse carry water with Christopher Hook, of Illinois’ Centre for Bioethics and Human Dignity. He told World magazine the exploitation of pre-born children was “too high a price regardless of the supposed benefit. We can never feel comfortable with identifying a group of our brothers and sisters who can be exploited for the good of the whole. Once we have crossed that line, we have betrayed our covenant with one another as a society, and certainly the covenant of medicine.”
In New Zealand, the issue of conducting medical experiments on dead bodies – both adult and fetal – is currently the subject of an ethics committee review by the Ministry of Health. Keely Bumsted O’Brien was one of those who made submissions to hearings prior to the issue of a draft report last year, Review of the Regulation of Human Tissue and Tissue-based Therapies, available on the web.
The 131 page document records a majority of submissions believe research should be prohibited on bodies where the wishes of the deceased were not known prior to death, even if the family give their consent post-mortem. As a foetus cannot express its wishes, such a restriction could impact on the use of fetal tissue, especially if society eventually reaches a decision that a foetus is a human life.
Even so, the document also notes growing unease at the use of fetal tissue for experiments, and the fact that it currently falls outside of the regulations, and the Ministry is now considering giving fetal tissue fresh ethical protection. How far it goes will depend, ultimately, on public debate.
PRICE LIST FOR BODY PARTS (US$)
Opening Lines Fee for Services Schedule
> age greater than
< age same or less than Unprocessed Specimen (> 8 weeks) $ 70
Unprocessed Specimen (< 8 weeks) $ 50
Livers (< 8 weeks) 30% discount if significantly fragmented $150 Livers (> 8 weeks) 30% discount if significantly fragmented $125
Spleens (< 8 weeks) $ 75 Spleens (> 8 weeks) $ 50
Pancreas (< 8 weeks) $100 Pancreas (> 8 weeks) $ 75
Thymus (< 8 weeks) $100 Thymus (> 8 weeks) $ 75
Intestines & Mesentery $ 50
Mesentery (< 8 weeks) $125 Mesentery (> 8 weeks) $100
Kidney-with/without adrenal (< 8 weeks) $125 Kidney-with/without adrenal (> 8 weeks) $100
Limbs (at least 2) $150
Brain (< 8 weeks) 30% discount if significantly fragmented $999 Brain (> 8 weeks) 30% discount if significantly fragmented $150
Pituitary Gland (> 8 weeks) $300
Bone Marrow (< 8 weeks) $350 Bone Marrow (> 8 weeks) $250
Ears (< 8 weeks) $ 75 Ears (> 8 weeks) $ 50
Eyes (< 8 weeks) 40% discount for single eye $ 75 Eyes (> 8 weeks) 40% discount for single eye $ 50
Skin (> 12 weeks) $100
Lungs & Heart Block $150
Intact Embryonic Cadaver (< 8 weeks) $400 Intact Embryonic Cadaver (> 8 weeks) $600
Intact Calvarium $125
Intact Trunk (with/without limbs) $500
Cord Blood (Snap Frozen LN2) $125
Spinal Column $150
Spinal Cord $325
Published in print November 2006, Investigate magazine