Experiments Haunt University

WALTHAM, Mass.--Decades ago, researchers from the University came here to the Walter E. Fernald State School to feed retarded children radioactive isotopes in their breakfast cereal.

On Monday, members of a state task force investigating those experiments returned to Fernald to announce their findings: Harvard researchers involved in those experiments violated the "fundamental human rights" of their test subjects.

The task force's report, which details the use of radioactive materials in human subject research form 1943 to 1973, recommends that "all participants...should be compensated for any and all damage incurred as a result of the studies."

"The call for compensation stems form the findings that there were violations of basic rights in the research," said Frederick M. Misilo Jr. chair of the state Task Force to Review Human Subject Research.

At the same time, Misilo said the nutritionstudies conducted at Fernald in the 1940s and '50scaused "no significant health effects" to thetests' subjects.

Task force members said the report's findingsare based on independent scientific analyses ofthe Fernald data, not on examinations of formertest subjects.

The group said it will continue to investigatea series of four thyroid experiments and a nuclearfallout experiment. Task force members refused torule out the possibility that subjects in theseexperiments had suffered health effects.

Scientists from Harvard and MIT led the thyroidstudies. A Harvard Medical School assistantprofessor and a Harvard researcher conducted thenuclear fallout experiment.

Misilo said he was "particularly horrified" atthe nuclear fallout experiment in which Harvardscientists fed small doses of radioactive iodineto children aged one to 11 at the Wrentham, StateSchool in Wrentham, Mass.

The task forced recommended that the Fernaldtest subjects be entitled to federal benefits forany medical diagnoses and treatments related tothe experiments.

Documents included in the report as well asothers obtained by The Crimson show that the testswere led by the late Dr. Clemens E. Benda, who wasFernald's medical director at the time and also afaculty member at the Harvard Medical School.

The task force said it had contacted about halfof the 74 subjects of the nutrition experiments atFernald and only a handful of the more than 200people used in the thyroid and nuclear falloutstudies.

David White-Lief, a member of the task forceand chair of the Fernald Human Rights Committee,said Harvard and MIT should bear part of the costsof compensation.

"I think Harvard should pay," he said. "I thinkMIT should pay. I think the Commonwealth ofMassachusetts should pay. They violated the rightsof those people."

But Misilo and all other task force membersdeclined to say whether Harvard and MIT shouldcontribute to any compensation.

"Harvard and MIT played a role. The researcherswere form these institutions," Misilo said. "But[compensation] is a question which has to bedecided by others. Harvard and MIT wereinvolved...It's a question of people who have themeans."

When asked, Misilo declined to say whether heconsidered Harvard and MIT institutions which"have the means" to compensate test victims.

The task force used records donated to Harvardby Benda's estate to identify the subjects ofnutrition experiments.

In the 1940s, '50s and '60s, Harvard hadextraordinarily close ties to Fernald, accordingto a 1959 report. Scores of Medical School, Schoolof Public Health and other graduate studentsattended annual lectures, workshops anddemonstrations at the school.

Acting Vice President for Government, Communityand Public Affairs Jane H. Corlette said Monday ina telephone interview that she could not discussthe report or its findings until she had read it."It's way too early to comment," Corlette said.

A statement released Monday afternoon by theUniversity news office said Harvard officials arestill reviewing the report.

"It's too early to speculate," said Universityspokesperson Joe Wrinn, the only Harvard officialwho attended Monday's press conference at whichthe task force released the report.

A University committee chaired by Professor ofMedicine Emeritus Walter H. Abelmann is currentlyconducting its own in house review of Harvardhuman subject research.

J. David Litster, vice president and dean forresearch at MIT, indicated he did not think hisinstitution will have to compensate test subjects.

"I think the task force concluded that no harmwas done," Litster said.

Asked by reporters to explain how such basicviolations of human rights might have happened,Department of Mental Retardation CommissionerPhilip Campbell said discrimination againstdisabled people had been the main factor.

"The most overriding issue is that people withdisabilities are often devalued in society," saidCampbell, who established the task force.

In an awkward moment for the task force,Charles Dyer, a subject of one of Benda'sexperiments and a task force member, appeared toquestion some of the report's findings. Dyer, 53,said he thought it was possible that test subjectshad suffered health effects and wondered whetherthe government or universities might be coveringup the existence of experiments.

"We were brought up here to be taught thingsand to learn. But we were used, and I don't thinkthat's right," said Dyer, who is now a truckdriver receiving worker's compensation. "It seemslike everything is being covered up."

Austin LaRocque, a 53-year-old constructionworker, was Dyer's friend and also a test subjectduring his nine years at Fernald. He said thepublicity resulting from the state investigationhas hurt his career and personal life.

"This has affected me in many ways. It hasaffected my family," said LaRocque, a member ofthe task force. "I had to use an assumed name andI've lost jobs because of this school [Fernald]."

LaRocque also said his son had been teased atschool about his father's connection to Frenald.

LaRocque and Dyer were both members of theso-called "Fernald Science Club," a group ofstudents enticed with trips and parties toparticipate in the tests.

"The provision of special rewards...otherwiseunavailable to individuals confined in aninstitutionalized setting...resulted in theresearch subjects being unfairly enticed by thoseconducting the research," the report states in oneof its 11 findings.

White-Lief said researchers delegated the taskof obtaining consent to the various state schools'superintendents, thereby failing to ensure thatthe informed consent of the subjects was secured.

"Each of the researchers had a non-delegableduty," said White-Lief, a Boston attorney. "Theduty rested on the researchers."

The 272-page report cites the task force'sthree main findings:

. The research conducted on human subjects ator from state schools between 1943 and 1973 thatinvolved the introduction of radioactivesubstances into their bodies was conducted inviolation of the fundamental human rights of thesubjects involved.

. The Commonwealth of Massachusetts, which wasat the time charged with the responsibility ofcaring for the individuals in its custody, failedto provide basic protection to the individuals whowere subjected to the research.

. Laws designed to protect persons with mentalretardation from being subjected toexperimentation are inadequate and need to bestrengthened.

Task force members urged the Department ofMental Retardation to support the passage ofcurrent legislation filed by Gov. William F. Weld'66. The proposed law requires the informedconsent of human subjects as a condition forperforming research in any state facility.

U.S. Rep. Edward J. Markey (D-Mass.) issued astatement yesterday praising the task force andthe report.

"From my viewpoint, the most importantrecommendations of the report are compensation fordamages and mechanisms to prevent a recurrence,"said Markey, adding that he has already introducedlegislation to set federal standards forcompensation.

The subjects of the experiments would likelyqualify for federal compensation because thelicenses to use the radioactive isotopes in manyof the tests came from the Atomic EnergyCommission, a predecessor of the EnergyDepartment.

Sen. Edward M. Kennedy '54-'56 (D-Mass.) echoedMarkey's statement in a letter accompanying thereport.

"Together we will uncover the full extent ofthe problem and ensure this will not occur again,"Kennedy said.

Campbell, the Department of Mental RetardationCommissioner, said he would adopt many of the taskforce's recommendations, including:

. strengthening restrictions on researchinvolving residents of state facility for thementally retarded;

. identifying all former research subjects;

. obtaining federal compensation for the testsubjects.CrimsonAndrew L. Wright"These people are certainly entitled tocompensation," said ROBERT KRANT, who served onthe state task force.

At the same time, Misilo said the nutritionstudies conducted at Fernald in the 1940s and '50scaused "no significant health effects" to thetests' subjects.

Task force members said the report's findingsare based on independent scientific analyses ofthe Fernald data, not on examinations of formertest subjects.

The group said it will continue to investigatea series of four thyroid experiments and a nuclearfallout experiment. Task force members refused torule out the possibility that subjects in theseexperiments had suffered health effects.

Scientists from Harvard and MIT led the thyroidstudies. A Harvard Medical School assistantprofessor and a Harvard researcher conducted thenuclear fallout experiment.

Misilo said he was "particularly horrified" atthe nuclear fallout experiment in which Harvardscientists fed small doses of radioactive iodineto children aged one to 11 at the Wrentham, StateSchool in Wrentham, Mass.

The task forced recommended that the Fernaldtest subjects be entitled to federal benefits forany medical diagnoses and treatments related tothe experiments.

Documents included in the report as well asothers obtained by The Crimson show that the testswere led by the late Dr. Clemens E. Benda, who wasFernald's medical director at the time and also afaculty member at the Harvard Medical School.

The task force said it had contacted about halfof the 74 subjects of the nutrition experiments atFernald and only a handful of the more than 200people used in the thyroid and nuclear falloutstudies.

David White-Lief, a member of the task forceand chair of the Fernald Human Rights Committee,said Harvard and MIT should bear part of the costsof compensation.

"I think Harvard should pay," he said. "I thinkMIT should pay. I think the Commonwealth ofMassachusetts should pay. They violated the rightsof those people."

But Misilo and all other task force membersdeclined to say whether Harvard and MIT shouldcontribute to any compensation.

"Harvard and MIT played a role. The researcherswere form these institutions," Misilo said. "But[compensation] is a question which has to bedecided by others. Harvard and MIT wereinvolved...It's a question of people who have themeans."

When asked, Misilo declined to say whether heconsidered Harvard and MIT institutions which"have the means" to compensate test victims.

The task force used records donated to Harvardby Benda's estate to identify the subjects ofnutrition experiments.

In the 1940s, '50s and '60s, Harvard hadextraordinarily close ties to Fernald, accordingto a 1959 report. Scores of Medical School, Schoolof Public Health and other graduate studentsattended annual lectures, workshops anddemonstrations at the school.

Acting Vice President for Government, Communityand Public Affairs Jane H. Corlette said Monday ina telephone interview that she could not discussthe report or its findings until she had read it."It's way too early to comment," Corlette said.

A statement released Monday afternoon by theUniversity news office said Harvard officials arestill reviewing the report.

"It's too early to speculate," said Universityspokesperson Joe Wrinn, the only Harvard officialwho attended Monday's press conference at whichthe task force released the report.

A University committee chaired by Professor ofMedicine Emeritus Walter H. Abelmann is currentlyconducting its own in house review of Harvardhuman subject research.

J. David Litster, vice president and dean forresearch at MIT, indicated he did not think hisinstitution will have to compensate test subjects.

"I think the task force concluded that no harmwas done," Litster said.

Asked by reporters to explain how such basicviolations of human rights might have happened,Department of Mental Retardation CommissionerPhilip Campbell said discrimination againstdisabled people had been the main factor.

"The most overriding issue is that people withdisabilities are often devalued in society," saidCampbell, who established the task force.

In an awkward moment for the task force,Charles Dyer, a subject of one of Benda'sexperiments and a task force member, appeared toquestion some of the report's findings. Dyer, 53,said he thought it was possible that test subjectshad suffered health effects and wondered whetherthe government or universities might be coveringup the existence of experiments.

"We were brought up here to be taught thingsand to learn. But we were used, and I don't thinkthat's right," said Dyer, who is now a truckdriver receiving worker's compensation. "It seemslike everything is being covered up."

Austin LaRocque, a 53-year-old constructionworker, was Dyer's friend and also a test subjectduring his nine years at Fernald. He said thepublicity resulting from the state investigationhas hurt his career and personal life.

"This has affected me in many ways. It hasaffected my family," said LaRocque, a member ofthe task force. "I had to use an assumed name andI've lost jobs because of this school [Fernald]."

LaRocque also said his son had been teased atschool about his father's connection to Frenald.

LaRocque and Dyer were both members of theso-called "Fernald Science Club," a group ofstudents enticed with trips and parties toparticipate in the tests.

"The provision of special rewards...otherwiseunavailable to individuals confined in aninstitutionalized setting...resulted in theresearch subjects being unfairly enticed by thoseconducting the research," the report states in oneof its 11 findings.

White-Lief said researchers delegated the taskof obtaining consent to the various state schools'superintendents, thereby failing to ensure thatthe informed consent of the subjects was secured.

"Each of the researchers had a non-delegableduty," said White-Lief, a Boston attorney. "Theduty rested on the researchers."

The 272-page report cites the task force'sthree main findings:

. The research conducted on human subjects ator from state schools between 1943 and 1973 thatinvolved the introduction of radioactivesubstances into their bodies was conducted inviolation of the fundamental human rights of thesubjects involved.

. The Commonwealth of Massachusetts, which wasat the time charged with the responsibility ofcaring for the individuals in its custody, failedto provide basic protection to the individuals whowere subjected to the research.

. Laws designed to protect persons with mentalretardation from being subjected toexperimentation are inadequate and need to bestrengthened.

Task force members urged the Department ofMental Retardation to support the passage ofcurrent legislation filed by Gov. William F. Weld'66. The proposed law requires the informedconsent of human subjects as a condition forperforming research in any state facility.

U.S. Rep. Edward J. Markey (D-Mass.) issued astatement yesterday praising the task force andthe report.

"From my viewpoint, the most importantrecommendations of the report are compensation fordamages and mechanisms to prevent a recurrence,"said Markey, adding that he has already introducedlegislation to set federal standards forcompensation.

The subjects of the experiments would likelyqualify for federal compensation because thelicenses to use the radioactive isotopes in manyof the tests came from the Atomic EnergyCommission, a predecessor of the EnergyDepartment.

Sen. Edward M. Kennedy '54-'56 (D-Mass.) echoedMarkey's statement in a letter accompanying thereport.

"Together we will uncover the full extent ofthe problem and ensure this will not occur again,"Kennedy said.

Campbell, the Department of Mental RetardationCommissioner, said he would adopt many of the taskforce's recommendations, including:

. strengthening restrictions on researchinvolving residents of state facility for thementally retarded;

. identifying all former research subjects;

. obtaining federal compensation for the testsubjects.CrimsonAndrew L. Wright"These people are certainly entitled tocompensation," said ROBERT KRANT, who served onthe state task force.