Document Search Was 'Herculean'
WALTHAM, Mass--Members of the state Task Force on Human Subject Research's scoured attics, searched long-neglected libraries and poured through rusty file cabinets to find papers relating to experiments with radiation conducted decades ago at state schools for the retarded.
Many of the documents turned up during the search are included in the task force's 272-page report, which was issued here Monday.
One task force member talked of sorting through hundreds of cardboard boxes to collect a handful of relevant papers. Another involved in the search described the task as "Herculean."
At Harvard, the Countway Medical Library had to hire an independent archivist to go through 72 boxes of files donated by the estate of the late Dr. Clemens E. Benda, who led some of the experiments at the Walter E. Fernald state School for the retarded. Benda was the medical director at Fernald and a faculty member at Harvard Medical School.
"Records donated to Harvard University by the estate of Dr. Clemens E. Benda, Medical Director at Fernald during the time period, allowed the positive identification of the 57 subjects in the Calcium studies," the task force report says.
In Benda's files, the subjects' names were all indicated by corresponding numbers, which were accompanied by corresponding research notes, according to the report.
Some of the papers show that Benda may have pressured parents into having their children participate in the radiation tests. The failure of Benda and other researchers to obtain the informed consent of test subjects leq the task force to conclude that the human rights of those who participated in the experiments were violated.
One letter which Benda sent to parents of Fernald boys requesting permission for the experiments say: "if you have not expressed any objections [by the given date] we will assume that your sons may participate."
None of Benda's consent letters to parents mention the use of radioactive materials.
One letter to Benda from an MIT researcher, Dr. Robert S. Harris, suggests lining up a baseball game to entice Fernald "Science Club" members to participate in the research.
Harris asked Benda to arrange an assembly at Fernald so that they could encourage the boys to participate and to "feel satisfied that their small pain is really worthwhile."
Copies of some of the files, reproduced in the report, show certain subjects' names blackened out.
Members of the task force said they included the documents in their report in an attempt to dispel any suggestions that further tests on children are being concealed from the public.
Officials said the thoroughness of the task force's report could make it a model for any future state or federal investigation into human subject research.