Woodlands School medical-research subjects demand more than an apology.
Almost 45,000 newborns are tested annually in B.C. for six metabolic disorders, including phenylketonuria (PKU), and about 20 infants a year are diagnosed with one of the six disorders. Last year, the Gordon Campbell government announced the screening program would be expanding from six to 19 disorders, including cystic fibrosis, sickle-cell disease, and maple-syrup urine disease.
A child with PKU has a deficiency of an enzyme required to process the essential amino acid phenylalanine, which is found in eggs, bananas, and aspartame. Without this enzyme, phenylalanine builds in the blood and causes brain damage, leading to developmental disabilities and seizures. PKU can be treated with a diet low in phenylalanine, and most children treated early will develop normal intelligence. According to the B.C. Women’s Hospital and Health Centre’s Web site, approximately one child in 12,000 is born with PKU.
What most people don’t realize is that testing and treatment for PKU were the focus of decades of medical research using the children at Woodlands School—B.C.’s controversial residential school for unwanted or disabled children and adults—which operated in New Westminster between 1950 and 1996.
Former B.C. ombudsman Dulcie McCallum’s 2001 administrative review of Woodlands found systemic evidence of physical, sexual, and psychological abuse and unexplained deaths. A subsequent investigation by B.C.’s Public Guardian and Trustee’s Office documented reports of abuse, overcrowding, sexually transmitted diseases, unexplained injuries and illnesses, sterilization and the use of birth control, heavy doses of medication, chronic infectious diseases (including hepatitis) and salmonella poisoning, and punishments involving restraints (shackles and belt leashes), withdrawal of food and privileges, and seclusion.
The B.C. government has always maintained that systemic abuse did not occur at Woodlands.
McCallum recommended an apology and compensation for victims. An apology came from government, but not compensation.
About 1,500 Woodlands survivors have been locked in a bitter class-action battle with the B.C. government since 2002. On April 30, 2009, the B.C. Court of Appeals ruled that survivors victimized at Woodlands prior to the Crown Proceedings Act of August 1974 have no recourse of action, stripping an estimated 550 survivors of any claim to compensation. Prior to B.C.’s Crown Proceedings Act, the King or Queen—the Crown—and their agents could do no harm.
“The decision was devastating. It’s like we’re being victimized again,” said Len Zimmer, who was at Woodlands from 1952 to 1966. “We are hoping there will be an appeal.”
Woodlands-class-action attorney David Klein was disappointed with the decision. “The law is clearly unjust,” he told the Georgia Straight. “There is no sensible reason why a Woodlands resident who was abused on August 1, 1974, can make a claim but a resident who was abused on July 31, 1974, cannot. We are filing an application for leave to appeal to the Supreme Court of Canada.”
The issue of Woodlands children being used in medical research while in government care hasn’t been a focus of legal action, unlike adult patients used in Dr. Ewan Cameron’s notorious CIA–funded “psychic driving” research experiments at Montreal’s Allan Memorial Institute in the 1950s and 1960s. Many of those unwitting research subjects were compensated, first by the CIA in 1988, and then by the federal government in 1994 and 2007.
“Our focus is on the severely substandard conditions—poor facilities, extreme overcrowding, inadequate staff levels, lack of programs, inappropriate discipline, et cetera—that created an environment of institutional abuse,” Klein said.
As with the Allan research, Health Canada cofunded many of the Woodlands research studies. Unlike the Montreal experiments, some of the Woodlands research may have benefited generations of children. In 1954, Polish-born postwar émigré Bluma Tischler was the first pediatrician to treat children at Woodlands. A dedicated doctor and medical researcher, she quickly became Woodlands’ medical director, coauthoring 35 research papers by 1987. Her research efforts were praised by the medical community and politicians alike, and a UBC fellowship was named in her honour in 1978 by Premier Bill Bennett. She was later named professor emeritus of pediatric medicine at UBC. In 1988, she retired.
According to a 1992 dinner speech by Tischler, in 1955 she surveyed Woodlands residents with a ferric chloride test and in 1956 half of the group identified as having phenylketonuria was placed on a low-phenylalanine diet. The other half was not treated and was used as the control group.
Woodlands became one of two official centres for PKU research in B.C. Tischler’s research was riding a worldwide wave of research by other physicians, who reported successful dietary treatment of PKU as early as 1949.
Woodlands survivor Zimmer remembers being segregated from other children and forced to eat certain foods. “They put me on a special diet along with several other boys,” he said. “We couldn’t eat anything other than that diet.”¦They took our stools and urine and had us go for blood tests. It was Dr. Tischler’s special diet. They were using us as guinea pigs.”
Zimmer said that to his knowledge, he has never been diagnosed with PKU. Historically, the PKU diet required all proteins to be filtered through charcoal. Vitamins had to be added.
Between 1958 and 1962, Tischler teamed with Dr. Edith McGeer, the wife of former B.C. Social Credit cabinet minister Pat McGeer. Tischler and McGeer coauthored and had published four studies on phenylketonuria. Tischler continued researching PKU, coauthoring several other research studies published between 1964 and 1972.
Unwitting research-experiment subjects at Montreal’s Allan Memorial Institute were compensated by the federal government in 1994 and 2007.
She also coauthored a study on pericyazine, a strong antipsychotic drug not normally used to treat children. She found the behaviour and table manners of mentally impaired children improved dramatically with pericyazine, and they were easier to control. Drug safety was established in the study after a six-month trial.
In 1972, isolation-ward head nurse Marie White complained to the Woodlands administration about overmedication of children “against doctor’s orders” to no avail. She also complained about the sexual abuse of children. When she threatened to go to the press, Woodlands administration staff had her committed to a private sanatorium. She won reinstatement after an investigation by the minister of health.
Some relatives recall their children at Woodlands were so overmedicated they didn’t recognize their own parents.
Bill McArthur and Zimmer both recall being heavily medicated while at Woodlands. McArthur remembers lining up every morning and night for medication. “Everyone got it,” said McArthur, who is the lead plaintiff in the class-action suit.
Tischler coauthored a pioneering study entitled Supra Pubic Aspiration of Urine in the Mentally Retarded Child, which was about a method of obtaining a sterile urine specimen from uncooperative children—by inserting a large needle into the bladder. She also had an interest in Down syndrome children.
Although it appears that Tischler and her coauthors’ research motivations were altruistic, what is less clear is the ethical role of the provincial government, Health Canada, and the administration at Woodlands, who allowed children in care to be used as medical-research subjects.
It was only 16 years prior to the first PKU study at Woodlands that ominous clouds gathered on the medical-research horizon.
In the fall of 1939, Adolf Hitler signed a decree ordering merciful death for Germany’s incurables. Despite the sometimes heroic attempts of doctors, nurses, and townspeople to prevent it, more than 70,000 disabled children and mental-hospital patients were killed during the first two years of the program. By the end of the Second World War, 275,000 Germans had been euthanized, and, like many concentration-camp inmates, many were victims of medical experiments prior to their deaths.
Nazi wartime medical research, and the trials of concentration-camp doctors, led to the development of the Nuremberg Code, later followed by the 1964 Helsinki Declaration. Both documents and subsequent declarations outline conditions for human medical research.
Section 1 of the Nuremberg Code states: “The voluntary consent of the human subject is absolutely essential. This means that the person involved should have legal capacity to give consent; should be so situated as to be able to exercise free power of choice, without the intervention of any element of force, fraud, deceit, duress, overreaching, or other ulterior form of constraint or coercion; and should have sufficient knowledge and comprehension of the elements of the subject matter involved as to enable him to make an understanding and enlightened decision. This latter element requires that before the acceptance of an affirmative decision by the experimental subject there should be made known to him the nature, duration, and purpose of the experiment; the method and means by which it is to be conducted; all inconveniences and hazards reasonable to be expected; and the effects upon his health or person which may possibly come from his participation in the experiment. The duty and responsibility for ascertaining the quality of the consent rests upon each individual who initiates, directs or engages in the experiment. It is a personal duty and responsibility which may not be delegated to another with impunity.”
Sections 2 to 10 reinforce the necessity for informed consent and the rights of subjects to withdraw at any time and not be subjected to duress, injury, or the potential for harm.
Children and cognitively impaired adults cannot offer informed consent. But University of Victoria medical ethicist Eike Kluge said the Nuremberg Code was considered unworkable soon after it was drafted and accepted precisely because it made it impossible to do research and experiments on persons who lacked capacity.
“The code entailed that one could not do research with children or the mentally disabled, the confused, people who suffered from Alzheimer’s, et cetera,” he told the Straight in a phone interview from his office. “This was changed in subsequent declarations because one cannot develop treatment options for these groups unless one enrolls them in the research. However, there should be an appropriate consent process for enrolling them.”
Kluge, who gave expert testimony in one of the Allan Institute lawsuits, says that the Canadian Medical Association’s code of ethics requires informed consent.
“It was a standard of medical ethics that patients should give informed consent to medical or other procedures,” he said. “Of course, this was not always followed. The best case in point on this is the infamous experiments performed by Dr. E. Cameron at the Allan Memorial Institute of McGill University in Montreal. Nevertheless, the federal government ultimately accepted that this was unethical behaviour, that it should not have funded the experiments, and offered compensation to the victims.”¦I cannot see how a lesser standard would apply to children who were used as subjects without appropriate consent.
“In ethics and law, even at that time, a substitute decision maker had the duty to make the decision in the best interests of the incompetent person,” Kluge explained. “Therefore, the question becomes: were the experiments or was the research therapeutic or nontherapeutic? If it was therapeutic, one can perhaps make a case for involving them. If it was nontherapeutic, the case would be very difficult to make.”
Attorney Klein said that although Woodlands survivors who were involved in medical research might have a claim against the federal government, it would require another lawsuit.
“What we’d really like to see is an out-of-court settlement before we all die,” said Woodlands survivor Zimmer, who turned 65 last summer.
The class action for post-1974 survivors is slated to begin in 2010.