Uncovering the truth

‘Against Their Will’ re­veals the hor­ri­fy­ing his­tory of med­ic­al ex­per­i­ment­a­tion on chil­dren dur­ing the Cold War.

  • History meets horror: Allen M. Hornblum, who wrote Against Their Will with two co-authors, stands in front of St. Vincent’s Home for Orphans in Tacony. In 1907, more than 100 children were used for diagnostic tests at the facility. MARIA POUCHNIKOVA / TIMES PHOTOS

  • History meets horror: Allen M. Hornblum, who wrote Against Their Will with two co-authors, stands in front of St. Vincent’s Home for Orphans in Tacony. In 1907, more than 100 children were used for diagnostic tests at the facility. MARIA POUCHNIKOVA / TIMES PHOTOS

In 1947, the world watched as 23 Ger­man doc­tors were put on tri­al for mon­strous med­ic­al ex­per­i­ments on hu­man be­ings dur­ing World War II. They were found guilty of tor­tur­ing con­cen­tra­tion camp pris­on­ers by im­mers­ing them in icy wa­ter, in­ject­ing them with plague, pla­cing them in va­cu­um cham­bers and for­cing them to swal­low sea­wa­ter.

Sev­en of the doc­tors were sen­tenced to hang; oth­ers got long pris­on terms; and Amer­ic­ans were hor­ri­fied by their crimes.

They just didn’t know, or per­haps just didn’t care, that doc­tors right here in the United States also were us­ing un­wit­ting “vo­lun­teers” in their quests for won­der drugs and mir­acle cures, in­ject­ing them with dis­eases, taint­ing their food and ex­pos­ing them to ill­nesses.

Their test sub­jects were chil­dren. Doc­tors had been ex­per­i­ment­ing on them for dec­ades — not so much in secrecy, but very much out of pub­lic view.

That’s the as­ser­tion in Against Their Will: The Secret His­tory of Med­ic­al Ex­per­i­ment­a­tion on Chil­dren in Cold War Amer­ica, a new book by North­east Phil­adelphia res­id­ent Al­len M. Horn­blum and two co-au­thors, Penn State pro­fess­or Ju­dith L. New­man and med­ic­al is­sues writer Gregory J. Dober. We saw evil abroad, but not at home, they wrote.

“Few, if any, would con­tem­plate why we so clearly saw a mul­ti­tude of vices oc­cur­ring in Nazi Ger­many’s med­ic­al es­tab­lish­ment dur­ing the 1940s, but turned a blind eye to our own sins in the use of vul­ner­able pop­u­la­tions as test sub­jects,” they re­por­ted.

Against Their Will, pub­lished June 25 by Pal­grave Mac­mil­lan, is part his­tory and part hor­ror story. It’s a story that’s well-told, but in no way pleas­ant.

“It out­rages me,” Horn­blum said dur­ing an Aug. 22 phone in­ter­view.

It’s shock­ing to find out just how low doc­tors would go. Even some of the saints of mod­ern medi­cine used chil­dren as test sub­jects, the au­thors wrote. And they used kids isol­ated in in­sti­tu­tions be­cause of phys­ic­al or men­tal han­di­caps.

Why them?

Simply be­cause they were isol­ated from so­ci­ety. They were con­veni­ent, avail­able and cheap. And, most im­port­ant, not many people seemed to care about them.

“Doc­tors had dis­covered a use for those locked away in state in­sti­tu­tions,” the au­thors wrote. “Chil­dren — mute, un­wit­ting and des­per­ate for af­fec­tion — would in­creas­ingly be­come the front-line troops in the med­ic­al com­munity’s quest to im­prove the world.”


Against Their Will con­tains chapter after chapter of ac­counts of ex­per­i­ment­a­tion on chil­dren. 

For ex­ample, at the Cath­ol­ic-run St. Vin­cent’s Home for Orphans in Ta­cony, more than 100 chil­dren young­er than 8 years old were used in 1907 for a series of dia­gnost­ic tests in which a tuber­culin for­mula was placed in their eyes. Wal­ter Reed, the doc­tor fam­ous for tra­cing yel­low fever to mos­qui­tos, used chil­dren in New York orphan­ages to study small­pox vac­cines.

And Jo­nas Salk used kids in Pennsylvania in­sti­tu­tions to test polio vac­cine.

“Salk was work­ing for years to pre­vent polio,” Horn­blum said Aug. 22. “He needed a test pop­u­la­tion.”

He found it in “in­sti­tu­tions per­ceived to hold dam­aged and de­fect­ive hu­mans,” Horn­blum said. “If you were go­ing to do something that was risky … you do it on people who are thought to have less value … so that you, the in­vest­ig­at­or, were less likely to face neg­at­ive com­ment … and less likely to face a law­suit.”

Be­sides, Horn­blum said, “kids in orphan­ages have no rights.”

Such prac­tices went on all over the coun­try and were well-known in the med­ic­al com­munity, the au­thors stated. Few doc­tors spoke out against the prac­tice.

This isn’t Horn­blum’s first ex­pos&ea­cute; of the ex­cesses of med­ic­al re­search. In Acres of Skin, the Ox­ford Circle res­id­ent ex­amined how Holmes­burg Pris­on in­mates were used in ex­per­i­ments.

Horn­blum said he found “stun­ning” the pub­lic’s out­rage over the Jerry San­dusky tri­al, in which the former as­sist­ant Penn State foot­ball coach was con­victed of sexu­ally ab­us­ing chil­dren, “as I was writ­ing a book about most of the 20th cen­tury in which chil­dren were be­ing used and ab­used.”

They were con­sidered so­ci­ety’s flot­sam and jet­sam and “no one really gave a damn about them.”

Ex­per­i­ment­a­tion on chil­dren was men­tioned in med­ic­al journ­al art­icles, Horn­blum said. “Doc­tors did read about it and were not dis­turbed or bothered by it. … It was the cul­ture of re­search.”

In the early 20th cen­tury, Horn­blum said, ac­cept­ance of med­ic­al ex­per­i­ment­a­tion on in­sti­tu­tion­al­ized chil­dren was the res­ult of a mix of pub­lic glor­i­fic­a­tion of doc­tors and their re­search, about bet­ter­ing man­kind and the be­lief that men­tally han­di­capped people were a bur­den so­ci­ety should not have to bear.

“I opened the book with this per­fect storm that de­veloped,” Horn­blum said. 

In the early part of the last cen­tury, books were li­on­iz­ing doc­tors for their suc­cesses against dis­ease, he said. Then there was eu­gen­ics, a the­ory de­veloped in the late 19th cen­tury that hu­man­ity could be sci­en­tific­ally shaped by con­trolling breed­ing and cut­ting out bad traits — like men­tal and phys­ic­al han­di­caps.

“On one hand, we were glor­i­fy­ing doc­tors who needed test sub­jects and would be do­ing very nasty things to people,” Horn­blum said.

On the oth­er hand, those with those han­di­caps were de­val­ued and de­hu­man­ized, Horn­blum said. They were people who had no con­nec­tion to their com­munit­ies and were con­sidered an onus.

Put­ting them to­geth­er “was an ar­range­ment that proved help­ful to re­search,” he said.

The irony is that the Nazi doc­tors were prac­ti­cing eu­gen­ics, a the­ory de­veloped by Amer­ic­an doc­tors, Horn­blum said. “Eu­gen­ics fit in well with the Nazis,” Horn­blum said. “They wiped out mil­lions of people.”

Fear also played a role. As the Atom­ic Age dawned, dread of nuc­le­ar war and its af­ter­math promp­ted med­ic­al ex­per­i­ments in which sub­jects were ex­posed to or in­jec­ted with ra­dio­act­ive ma­ter­i­al.

The first ex­ample the au­thors cite is that of an in­sti­tu­tion­al­ized boy named Charlie Dyer who was offered the op­por­tun­ity to join the “Sci­ence Club” at the Fernald State School in Mas­sachu­setts. In the 1950s, Dyer and oth­er boys were offered in­cent­ives like spe­cial out­ings to join. But the perks proved few and far between, and Dyer later learned that he and the oth­ers were part of secret ra­di­ation ex­per­i­ments. Their oat­meal break­fasts were tain­ted with ra­dioiso­tope-laced milk.

Dur­ing the last 25 years of the 20th cen­tury, ex­per­i­ments were sub­jects to in­sti­tu­tion­al over­sight and re­view com­mit­tees. As doc­tors, in­sti­tu­tions and phar­ma­ceut­ic­al com­pan­ies be­came more aware of eth­ic­al con­straints and re­strict­ive codes, the au­thors wrote, ab­uses were re­duced, but not elim­in­ated in the United States.

Horn­blum said he wouldn’t call drug com­pan­ies evil, “but they are primar­ily mo­tiv­ated by profit. … It is im­port­ant from a cor­por­ate per­spect­ive to de­vel­op new drugs … I will not ar­gue that it is an in­ex­pens­ive pro­cess … [drug com­pan­ies] look for the quick­est and cheapest and easi­est ways to de­vel­op their lines of goods.”

So ex­per­i­ment­al sub­jects are still needed, and the profit in­cent­ive in find­ing cheap sub­jects moved test­ing over­seas. The au­thors said 80 per­cent of all drug ap­provals are based in part on re­search data ac­cu­mu­lated out­side the United States. 

“It’s cheap­er to do re­search abroad,” they wrote, “where it is easi­er to re­cruit test sub­jects — many of them in­cor­rectly be­liev­ing they are be­ing treated — and where there is less like­li­hood that neg­at­ively im­pacted in­di­vidu­als will seek leg­al coun­sel.”

And so, ex­per­i­ment­a­tion on vul­ner­able hu­man sub­jects con­tin­ues.

“Sci­entif­ic pro­gress and the med­ic­al ad­vances it fosters is a pro­cess we can all cel­eb­rate,” Horn­blum, New­man and Dober wrote, “but the at­tain­ment of such tri­umphs on the backs of chil­dren and oth­er power­less groups makes their real­iz­a­tion all the less im­press­ive and praise­worthy.” ••

The write stuff

Al­len M. Horn­blum and Ju­dith New­man, two of the co-au­thors of Against Their Will, will dis­cuss med­ic­al re­search eth­ics at 7 p.m. on Wed­nes­day, Sept. 25, at Lub­ert Com­mons  Penn State’s Abing­ton Cam­pus, 1600 Wood­land Ave. The au­thors’ guests will in­clude Jonath­an Marks, a bioeth­i­cist and former dir­ect­or of the Rock Eth­ics In­sti­tute; Gor­don Shat­tuck, a former child test sub­ject; and Kar­en Alves, sis­ter of a test sub­ject. For more in­form­a­tion, vis­it www.horn­blum.com

You can reach at jloftus@bsmphilly.com.

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