When Science Goes Wrong (38 page)

In their analysis, Ambrose and Yairi took a cautious view of the idea that the NS children suffered lasting harm. ‘There did seem to be an effect that when children were told “You’d better watch out what you say” or “You’d better not repeat”, they got anxious about talking,’ Ambrose told me. But she pointed out that there was no objective assessment of such effects in the study. In addition, she tended to pooh-pooh the notion that the children had been turned into asocial hermits by the experience, as some of the elderly survivors apparently claimed in their discussions with Dyer. ‘These were children who were given up [by their parents], children who were living in a situation way less than ideal,’ Ambrose said. ‘These individuals had so many difficulties in their lives, I don’t see why you would think that that particular study of a few months, with very little contact really, had any kind of significant effect on their lives.’ She mentioned an episode recounted by Dyer, in which Mary Korlaske ran away from the orphanage and made it all the way back to her mother’s home, whereupon her mother summoned the police to take Mary back to the orphanage. ‘I would think that would be a much more problematic situation than someone telling you that you should speak fluently,’ Ambrose commented.

Given that Ambrose and Yairi are members of the academic speech-pathology community, it may be that they were motivated to minimise the harm suffered by children in Tudor’s experiment as a way of protecting Johnson’s reputation. Nevertheless, they minced no words in their critique of the Tudor study’s scientific merits. All in all, it seems very difficult at this point to discern what role, if any, the Johnson-Tudor study played in the difficulties that some of the NS children experienced in their later lives.

Tudor’s thesis was never published, and Johnson never referred to it in his own published writings. The only reference he made to the study was in his lectures to students, in which he cited it in support of the diagnosogenic theory, as mentioned by Oliver Bloodstein. According to Jim Dyer, this failure to publicise the study amounted to a positive ‘hiding’ of it. Dyer maintained that the reason had to do with the atrocities perpetrated by Nazi doctors in the name of medical science during World War II. After those crimes came to light, the entire scientific community was sensitised to ethical issues in research involving human subjects, and in this new environment Tudor’s experiments would have seemed ethically indefensible.

Ehud Yairi took exception to Dyer’s imputation that Johnson actively hid the Tudor study. Yairi stressed that the thesis has been available in the University of Iowa library and that at least 19 people are recorded as having read it between 1941 and 1993. Yet shelving an unpublished master’s thesis in a university library is equivalent, in the majority of cases, to destroying it. Such theses are rarely read and almost never cited.

Given that the study, on its face, was actually a disconfirmation of his theory, Johnson’s failure to publish it or refer to it in print could be viewed in quite a different light – that is, as part of a strategy to protect his pet theory from findings that put it in doubt. If so, his and Tudor’s failure to publish would be ethically troubling. It is equally possible, however, that Johnson realised that the study had grave methodological shortcomings that would not have passed scrutiny. ‘In light of today’s standards, I would say this is totally not publishable because it’s a very poorly done study,’ commented Ambrose.

Although Tudor’s thesis languished on the library stacks, and Tudor herself left the University of Iowa to take up a position as a speech therapist, there was some institutional memory of her experiment. Some of Johnson’s students began referring to it as the Monster Study. As far as I know, the first use of this phrase in print was in 1988, when the late Franklin Silverman, a professor of speech pathology at Marquette University, used it as the title of an article about the study.

During the postwar years, Wendell Johnson gradually built up his diagnosogenic theory into the centrepiece of his thinking about how stuttering developed and how it should be prevented or cured. It was but one of many ‘blame the parents’ theories that were current in that epoch: schizophrenia, autism, homosexuality and many other traits were said by influential academics and doctors to be caused by the way parents and others treated young children.

Although Johnson held fast to his theory until his death, other lines of research gradually made it seem less and less plausible. For one thing, studies of young children – some of them done by Nicoline Ambrose – revealed that the speech mistakes made by children at the very onset of stuttering are not the normal disfluencies exhibited by other children, but distinct abnormalities that are immediately recognisable as the beginning of stuttering. A child can be talking entirely normally, Ambrose told me, and the next day he or she wakes up obviously stuttering. There is increasing evidence that there is a genetic predisposition to stuttering. The efficacy of some drugs in relieving stuttering also points toward a biological explanation and away from a theory based on family dynamics. At this point, Johnson’s diagnosogenic theory is dead, and most of the current research interest is in pinning down the brain miswiring that was hypothesised by Johnson’s teachers in the 1930s.

That is not to say that Johnson’s contributions were worthless. He made useful studies of the ‘stuttering block’ – the mental events that lead to the moment when the person who stutters does actually stutter. And Johnson is still considered to have helped people  overcome or reduce their stuttering by encouraging them to see the trait as something they could control – an echo of the ‘Be the master of your fate and the captain of your soul’ mantra that he first heard as a teenager.

Ambrose emphasised this positive aspect of Johnson’s work in her discussion with me, but she also added a warning that it sometimes leads to negative consequences, especially a tendency to blame the person who stutters for his or her failure to improve. ‘[Johnson’s] idea that if stuttering can be learned it can be unlearned has done a disservice in some ways,’ she said, ‘because if you keep on stuttering, what’s wrong? And we don’t think that’s a failure on the part of the clinician or the client, if they’re not able to reduce their stuttering.’

During all the years in which Johnson’s diagnosogenic theory gained credence and then gradually lost it, the Tudor study remained largely unknown. Tudor herself, like the subjects of her study, led an inconspicuous life. There were occasional written references to the study, such as the 1988 article by Franklin Silverman, mentioned earlier. And in 1999, Jerome Halvorson – a onetime professor of speech pathology at the University of Wisconsin who had obtained a master’s degree at the University of Iowa – wrote a novel about the study, titled
Abandoned: Now Stutter My Orphan
. Halvorson used pseudonyms for the students rather than divulging their real names. Because the novel was self-published and highly idiosyncratic in style, it attracted little attention.

It was Jim Dyer’s articles in the
San Jose Mercury News
in 2001 that first drew wide attention to the Tudor study. Dyer’s articles contained what purported to be accurate details of the study, interlaced with sentimental accounts of a human drama that was largely orchestrated by Dyer himself.

A brief account of how this happened was given to the
Des Moines Register
by David Yarnold, executive editor of the
Mercury News
. Yarnold said that Dyer, besides his job at the
Mercury News
, was also a graduate student at the University of Iowa. Using his identity as a graduate student, Dyer gained access to the Iowa State Archives in Des Moines – specifically to confidential records that are only open to academics for
bona fide
research purposes. From these records, Yarnold said, Dyer obtained the real names of the children in Tudor’s study. (However, some of these names were also mentioned in Tudor’s notes, according to Dyer.) Armed with the names, Dyer tracked down and interviewed several of the surviving children – now elderly adults. He told them about the real purpose of Tudor’s study, of which the children had apparently never been informed, even in the course of Tudor’s ‘debriefing’ sessions after the study was completed. (Again, I haven’t been able to confirm this account with Dyer himself.)

Several of the subjects reacted to the information with understandable anger. Dyer describes the lives of some of them as having followed a downward spiral, starting with the stuttering that was allegedly caused by the study and progressing to near-complete social isolation in some cases. The centrepiece of Dyer’s story was Mary Korlaske, now a widow and a reclusive inhabitant of a retirement home, who was so incensed by what she heard from Dyer that she wrote an angry letter to Tudor – whether spontaneously or at Dyer’s suggestion, I don’t know. The letter, which was addressed to ‘Mary Tudor the Monster’ concluded as follows:

As I sit here crying… I wondered what I could say or send you to remind you of the hurtful pain that never goes away.

I’m sending you your own thimble.

God try to have mercy, or should he? You had no mercy for the children who still cry in the night.

- Mary Korlaske Nixon Case No.15

PS When the tears get realy (sic) bad, punch a whole (sic) in the bottom of the thimble like I did. Then the thimble won’t over flow.

Dyer hand-carried the letter to the 84-year-old Tudor – or else, he just happened to be present when it arrived in the mail – and he described Tudor’s reactions as she looked it over: the shaking of her head, the trembling of her hands and her comment, ‘Oh dear – I hope it isn’t a bomb.’

According to Dyer, Tudor herself made both positive and negative comments about the study. On the one hand. she was proud of a study that – as she still believed – proved Johnson’s diagnosogenic theory correct. ‘It was a small price to pay for science,’ Dyer quoted her as saying. ‘Look at the countless number of children it helped.’ On the other hand, she expressed shame at the apparent harm the study had done to some of the children. ‘That was the pitiful part – that I got them to trust me, and then I did this horrible thing to them,’ she said. Tudor deflected much of the blame onto Johnson who, she said, told her to perform the study in the fashion that she did, and neglected to have psychotherapists help the children to recover from the trauma that had been inflicted on them. I had hoped to hear more about this from Tudor herself, but when I tried calling her in the autumn of 2006 a neighbour informed me that she had died a few weeks earlier.

Dyer resigned from the
Mercury News
after the ruse he had allegedly used to discover the names of Tudor’s subjects came to light, and since that time he seems to have disappeared from public view.

In a lawsuit brought against the State of Iowa in 2003, the three surviving subjects in the NS group, along with the estates of the three who had died, requested $13 million in damages for intentional infliction of emotional distress, fraudulent misrepresentation, breach of fiduciary duty, invasion of privacy and civil conspiracy. In August of 2007 the plaintiffs settled with the State of Iowa in return for a total payment of $925,000.

As suggested earlier, it may be very difficult to tease apart the harm caused by the Tudor study from that caused by the many other traumas suffered by the orphanage children both before and after they participated in the study. But this uncertainty has not prevented many people from passing judgment on the ethical issues surrounding the case.

One person who has reviewed these issues in particular detail is Richard Schwartz, Presidential Professor in Speech and Hearing Sciences at the Graduate Center of the City University of New York. Schwartz has for many years chaired CUNY’s Institutional Review Board. In 2005, he published an analysis of the Tudor study with this question in mind: Would the study be approved if it were proposed to an IRB today? Schwartz believes that there are several reasons why it would not. First, there was the real possibility for harm to the children who were to be labelled as stutterers. ‘If you really believe the theory, you’re going to turn these children into stutterers,’ he told me in a 2006 interview. In addition, there was the possibility for more general psychological harm, as the lawsuit alleges did occur. These potential harms were not balanced by any potential benefits to the children.

Second, Schwartz says that the study would be judged unethical on account of its poor design and execution, which made it unlikely that it would add anything to the fund of knowledge about stuttering. If a study cannot generate useful findings it is unethical to engage human subjects in it.

Third, Schwartz believes that the study would be judged unethical because of its use of institutionalised children, who are considered to lack the same protections and capacity for choice that children living with their parents typically enjoy. In fact, current US federal regulations would rule out the Tudor study on these grounds alone.

Lastly, Schwartz believes that the use of deception in the Tudor study would be considered unethical today, because the scientific issues at the heart of the study could have been addressed by other means, and because the deception was not justified by any probability that real advances in scientific understanding or human welfare would result from its use.