Nicholas Johnson's chapter is a rewrite and update of his paper presented at the "Symposium on Ethics and The Tudor Study: Implications for Research in Stuttering," organized by the Ph.D. Program in Speech and Hearing Sciences of the City University of New York and held at the CUNY Graduate Center, New York City, December 13, 2002.

The full chapter -- text, references and endnotes -- is available as a pdf file at http://www.nicholasjohnson.org/wjohnson/hsr/njhsr512.pdf . Endnote 1 indicates, in part,

"This chapter is supported by a Web site at http://www.nicholasjohnson.org [actually, the direct link now is  http://www.nicholasjohnson.org/wjohnson/hsr]. Many of the chapter's citations are to on-line material. Although the URL links were working when the book went to press, in the future some may no longer function. Thus, the Web site provides updated URLs. It also contains links to the original version of this chapter presented as a paper, additional references beyond those listed here, the Wendell A.L. Johnson Memorial Home Page, and additional information about the author [see links following "About Nicholas Johnson" at http://www.nicholasjohnson.org]."

Nicholas Johnson wishes to thank Abigail Darwin for her efforts in creating these hot links.

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Medical journals battle drug firms' grip on research. (2001, August 5). Iowa City Gazette, p. 3A.

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Pappas, G. (2001, July 24). Ul fires back at register's headline. The Daily Iowan, p. 1.

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Pelton, T. (2001, July 8). Respected doctors confront a tragedy; experiment: With a research subject's death, two distinguished scientists confront what colleagues say is the worst imaginable outcome. The Baltimore Sun.

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1. This chapter is supported by a Web site at http://www.nicholasjohnson.org [http://www.nicholasjohnson.org/wjohnson/hsr]. Many of the chapter's citations are to on-line material. Although the URL links were working when the book went to press, in the future some may no longer function. Thus, the Web site provides updated URLs. It also contains links to the original version of this chapter presented as a paper, additional references beyond those listed here, the Wendell A.L. Johnson Memorial Home Page, and additional information about the author.

This chapter only addresses the ethical issues surrounding the Tudor study. It leaves to research scientists' other chapters the analysis of the Tudor study data and conclusions. It presumes the reader has at least some awareness of stuttering research in general, the research of Dr. Wendell Johnson in particular, and most especially a 1939 masters thesis by one of his graduate students, Mary Tudor.

2. The emotionally-loaded quality of the reporting is illustrated by the language used in the accompanying promotion:

[In the] 'Monster Study' in 1939, an ambitious professor conducted a secret experiment on a group of orphans to test a new theory on stuttering. The results helped gain renown for the professor, but many of the children were psychologically harmed for life. The study was covered up, even from the orphans-until now.

There is no evidence for the assertions that the study, often examined by researchers and referenced in print (including an earlier story by this very reporter), was "covered up ... until now," that it involved "stuttering" rather than "disfluency," or that "many of the children were psychologically harmed for life."

Part Two was published by the same newspaper June 11, 2001, also on page 1A. Its promotional material included this quote: "An experiment leaves a lifetime of anguish [as] the study's young victims were left in ignorance, to cope alone. Experts debate whether the benefits justified the harm."

3. "For [former University of Iowa Vice President for Research] Duane Spriestersbach ... [the] experiment was both justified and ethical. 'It was a different time and the values were different.... Today we might disagree with what he did, but in those days it was fully within the norms of the time."' Jim Dyer, "Ethics and Orphans: The Monster Study," Part Two of a Mercury News Special Report, San Jose [CA] Mercury News, June 11, 2001, p. 1A. Others agree. "The University of Iowa's stuttering experiment six decades ago ... wouldn't have been considered so unusual at the time, according to experts." Colleen Krantz, "Orphans Targteted for Tests," Des Moines Register, July 9, 2001, p. 1. As then-University of Iowa President Mary Sue Coleman put it, "It was a different time and place." Jim Jacobson, "UI Denounces Experiment," Iowa City Gazette, June 13, 2001, p. IA. The University's Human Subjects Office director, Trish Wasek, said, "It was a different time and a different set of mores in existence at the time." Colleen Krantz, "U of I Rues Experiment on Stutterers," Des Moines Register, June 14, 2001, p. 1.

4. That this is not always the case, that there are mature adult responses occasionally, is illustrated by the Baltimore Sun's noting the contrast between the responses of Johns Hopkins and Rochester researchers after the death of a human subject. "In Rochester in 1996 [following the death of a human subject], doctors disclosed as many details as they could, at the risk of embarrassing themselves and complicating their legal position .... In Baltimore in the past few weeks, Hopkins leaders initially chose to reveal little, at the risk of appearing to have something to hide." Eric Siegel and Diana K. Sugg, "Management of Crisis Key to Public Trust," The Baltimore Sun, June 24, 2001.

5. Aside from the obvious use of the label "monster study" as a pejorative to besmirch the reputations of the researcher and her supervisor, it is not otherwise totally clear what "monster study" is intended to convey. Is it that the researcher was a "monster" ("a cruel, wicked and inhuman person")? Is it that the study produced "monsters" ("a grossly malformed and usually nonviable fetus")? That the study actually made the subjects stronger ("someone or something that is abnormally large and powerful")? Certainly those who so describe the study do not mean to suggest that the study was a big hit in speech communication research, as in "a monster hit at the box office." (Quoted definitions from http://dictionary.com) Whichever of these meanings is intended by the use of "monster study" it is so totally devoid of factual basis as to leave it as little more than a purposeful attack on reputation.

6. The president of the Stuttering Foundation of America has also noted, "In the 60 intervening years, no other researcher [than Mary

Tudor] has demonstrated that labeling someone a stutterer or criticizing his speech alone leads to the development of stuttering." Jane Fraser, The Fresno Bee, July 10, 2001, p. B6.

7. "Inasmuch as there is willingness to recognize differences in standards that existed 60 years ago, the remaining major concern in the case of the Tudor study is whether or not the experimenter and her mentor intended to cause harm by turning normally speaking children into children who stutter. Our review of the study reveals no such apparent intent. The study investigated whether the level of disfluency could be changed as a result of labeling. It was not to create stutterers. Even if there was an unstated goal to increase disfluency to a level perceived as stuttered speech, there is no indication that Tudor or Johnson believed that, if successful, this would make the children chronic stutterers. This, in our opinion is a critical point in judging the ethics of those involved in the conduct of the study."

They conclude, "Our assessment of the ethical issues suggests that the study should be viewed within the common standards of the period, that there is no evidence of intent to harm, and that the objective of increasing disfluent speech should not be confused with instilling chronic stuttering in normally fluent children." (Ambrose & Yairi, 2002, p. 201)

8. The World Health Organization (WHO) is involved in evaluating the ethics of a number of aspects of medical care in developing countries. U.S. pharmaceutical companies have sometimes sold drugs in developing countries that have been rejected by the FDA for sale in the United States. Among the WHO's concerns are the ethical issues raised by the use of human subjects from developing countries in studies conducted by corporations and their researchers from the developed world. Concern for human subjects research ethics when the subjects are Americans tend to evaporate beyond our borders. As one author has put it, researchers are "changing their ethics 'at the customs desk."' Paul M. McNeill (1998), "Should Research Ethics Change at the Border?" The Medical Journal of Australia, 169, 509-510, http://www.mja.com.au/public/issues/nov16/mcneill/mcneill.html.

The WHO has an ethics page on the Web, http://www.who.int/ethics/en. One of its publications refers to "current ethical controversies as experienced in Argentina, Brazil, Canada, Colombia, Chile, Spain, the United States, Mexico and Peru."

The Centers for Disease Control and Prevention has a "Human Subjects Research" page (http://www.cdc.gov/od/ads/hsr2.htm) and provides

the text of the Council for International Organizations of Medical Sciences (CIOMS), "International Guidelines for Ethical Review of Epidemiological Studies" (Geneva, 1991), http://www.cdc.gov/od/ads/intlgui3.htm.

In March 2000, the New England Journal of Medicine reported a study reminiscent of Tuskegee (discussed in section II. D. 1., in the text) done by researchers from no less prestigious a research institution than Johns Hopkins. In the Rakai region of Uganda they monitored 415 couples of whom only one partner was infected with HIV. The researchers did not inform the AIDS-free partners. Thirty months later 90 of the formerly healthy spouses had become infected. The journal's editor charged that the study was unethical by U.S. standards. "Ethics of Medical Research in the Third World," AllAfrica Global Media, February 2, 2001, http://allafrica.com/stories/200102020128.html (subscription required). Five people died in a South African clinical trial of anti-AIDS drugs at the Kalafong hospital where participants "claimed they were ill-informed about their rights when they signed consent forms." Ibid.

Paul M. McNeill, cited above, reports that as a result of providing HIVinfected mothers with placebos as a part of studies in Thailand, Africa, and the Caribbean, their children were unnecessarily, and deliberately, permitted to develop AIDS.

9. That supersensitivity about human subject research ethics is both preventing research that needs to be done, and producing unfair moral judgments about that which has gone before, is supported by a couple of articles: Christopher Shea, "Don't Talk to the Humans," Linquafranca, 10(6), September 2000, and John R. Stanley, "Ethical Accusations: The Loss of Common Sense," Archives of Dermatology, 136(2), 268-269, February 2000, http://archderm.ama-assn.org/cgi/content/extract/136/2/268-a (extract only with link to subscription-based full text).

Shea discusses examples of IRBs interfering with research in anthropology, history, journalism, public policy (researchers' interviews with government officials), and urban ethnography. He cites the case of a history Ph.D. candidate who also works as a newspaper editor. "So during the day, when he's working on his dissertation, he is supposed to get permission from an IRB before he talks to a retired governor or columnist.... At night, he can call up anyone he wants and grill them."

Shea draws a stark contrast between the punctilious attention given by some to relatively harmless practices on the one hand (what he characterizes as the ethical equivalent of "run[ning] a red light on a deserted

street at 3:00 am"), and the somewhat less attention paid to much more serious ongoing ethical violations:

You would not get the impression that human-subject committees are overly aggressive from reading the newspapers. In September 1999 a young man died while undergoing experimental gene therapy at the University of Pennsylvania, and his father subsequently claimed that no one had fully explained the risks involved in the treatment. Since the fall of 1998 the National Institutes of Health (NIH) have shut down research programs at eight institutions, including Duke University Medical Center, the University of Illinois at Chicago, and Virginia Commonwealth University. The NIH cited violations that ranged from inadequate recordkeeping to a failure to review projects that should have been vetted.

10. Much of the research regarding studies described in this section came from the Department of Energy's Advisory Committee on Human Radiation Experiments Report, DOE Openness: Human Radiation Experiments, http://tis.eh.doe.gov/ohre/roadmap/achre/ The Committee was established by the President in 1994. See especially "Part I. Ethics of Human Subjects Research: A Historical Perspective," http://tis.eh.doe.gov/ohre/roadmap/achre/overpt1.html.

The U.S. Department of Health and Human Services' Office for Human Research Protections is a prime site for links to many of the basic documents both historical and current, http://www.hhs.gov/ohrp/ One of its pages provides links to educational material for researchers about human subjects ethics, http://www.hhs.gov/ohrp/education/index.html#materials.

The Virginia Commonwealth University's site, "Ethics of Research Involving Human Participation," contains useful links:
http://www.vcu.edu/hasweb/psy/faculty/fors/ethics.htm Professor Lawrence M. Hinman at the University of San Diego maintains an "Ethics Update" site, http://ethics.acusd.edu/.

The National Library of Medicine's "Current Bibliographies in Medicine" series includes 5000 references in "Ethical Issues in Research Involving Human Participants," Current Bibliographies in Medicine 99-3, http://www.nlm.nih.gov/pubs/cbm/hum_exp.html. The Introduction notes the significance of the President's 1997 apology to the

survivors of the Tuskegee Syphilis study and the reforms that followed. It says, "Contemporary safeguards such as [IRBs] are important, but by themselves are insufficient. Educating researchers and the public about research ethics is critical for the full protection of research participants." This bibliography is itself a consequence of that finding, and the work of the Bioethics Education Materials and Resources Subcommittee of the National Bioethics Advisory Commission.

11. The Nuremberg Code (1948) is a basic document available from numerous sources and Web sites. One is, "Nuremberg Code: Directives for Human Experimentation," Trials of War Criminals before the Nuremberg Military Tribunals under Control Council Law No. 10, Vol. 2, pp. 181-182. Washington, DC: U.S. Government Printing Office, 1949, http: //ohsr.od.nih.gov/nuremberg.php3 [http://ohsr.od.nih.gov/guidelines/nuremberg.html].

12. World Medical Association, "World Medical Association Declaration of Helsinki Ethical Principles for Medical Research Involving Human Subjects" ("Declaration of Helsinki") (Adopted by the 18th World Medical Assembly, Helsinki, Finland, June 1964, and amended by the 29th World Medical Assembly, Tokyo, Japan, October, 1975, 35th World Medical Assembly, Venice, Italy, October 1983, 41st World Medical Assembly, Hong Kong, September 1989, 48th WMA General Assembly, Somerset West, Republic of South Africa, October 1996, and the 52nd WMA General Assembly, Edinburgh, Scotland, October 2000), http://www.nihtraining.com/ohsrsite/guidelines/helsinki.html.

And see Glen Drew, "Side-by-Side Comparison of 1996 and 2000 Declaration of Helsinki," http://www.hhs.gov/ohrp/nhrpac/mtg12-00/h1996-2000.pdf.

13. See, for example., NIH, Office of Human Subjects Research, "Criteria for Institutional Review Board (IRB) Approval of Research Involving Human Subjects," http://www.nihtraining.com/ohsrsite/info/sheet3.html. Criterion 2 provides, "An IRB may approve research only after it has determined that all of the following requirements are satisfied: ... (b) Risks to subjects are reasonable relative to (1) anticipated benefits, if any, to subjects, and (2) the importance of the knowledge that may reasonably be expected to result."

14. This common defensive, and seemingly uncaring, reaction continues to this day. Following the death of a subject during a 2001 Johns Hopkins study there was an expression of considerable outrage by Johns Hopkins' doctors over the government's closing down their research ("unwarranted, unnecessary, paralyzing and precipitous").

There was after all, they pointed out, only one dead subject. You would think it was they who were the victims rather than their dead human subject and her family members.

Nor was concern about loss of funding limited to Hopkins. The University of Iowa contributed to a local news story by Jim Jacobson, headlined "UT Funding Unaffected by Halt in Johns Hopkins Cancer Study," Iowa City Gazette, July 21, 2001, p. 1. Apparently Hopkins, rather than the government, subcontracts to the university $700,000 a year for one study and $11,000 for another. Iowa City residents were no doubt reassured to learn that the local research "likely will not be affected." There was no mention of the death, nor of expressions of concern by university administrators.

15. Even Mercury News reporter Jim Dyer later acknowledged, during an NPR interview, that "[Johnson] went to the ... place that the University of Iowa ... had used for several studies and research projects, and received permission ... for this particular project." NPR, "Weekly Edition," June 23, 2001. He wrote, "In fact, in its 1936 biennial report, the Iowa State Board of Control, which oversaw all state institutions, openly encouraged and reported on cooperation with the University of Iowa in conducting research using children in various institutions." Jim Dyer, "Ethics and Orphans: The 'Monster Study,"' San Jose Mercury News, June 11, 2001. And see Colleen Krantz, "Orphans Targeted for Tests," Des Moines Register, July 9, 2001, p. 1. James Holmes, superintendent of the institution during the 1950s and 1960s has said of the Tudor study, "The state must have known about it" (Dyer, above).

16. References to the full text of the NASA standards, and their historical evolution, are a part of the Advisory Committee on Human Radiation Experiments Report; see Part 1, Chapter 3, NASA Policy, http://www.eh.doe.gov/ohre/roadmap/achre/chap3_3.html.

17. "The history of psychology ... is studded with experiments whose designers gave too little thought to the well-being of their subjects .... [I]n the early 1960s the young Theodore Kaczynski-the future Unabomber-was among a group of Harvard students garlanded with electrodes and confronted by skilled lawyers who ridiculed and demolished what the students avowed were their most deeply held beliefs. No one explained the experiment in advance, the psychologists wanted to see how the students would handle the stress." Christopher Shea, "Don't Talk to the Humans: The Crackdown on Social Science Research," Linguafranca, 10(6), September 2000. For

additional references see, Nicholas Johnson, "Psychology's Special Problems," in "Cites, Sites, Sources and Notes," linked from http://www.nicholasjohnson.org [http://www.nicholasjohnson.org/wjohnson/hsr/hsrsites.html].

18. Even Tudor ethics critic Jim Dyer expressly acknowledges, "In the autumn of 1938, Johnson received permission from orphanage officials to begin his experiment." Jim Dyer, "Ethics and Orphans: The 'Monster Study,"' San Jose Mercury News, June 10, 2001. He continues, "The university had already conducted numerous research projects ... there, among them a decades-long study to see if developmental retardation would be more common among children who remained in the overcrowded and unstimulating orphanage than among children placed in a special new preschool."

19. Retired Marquette speech pathology professor Bill Trotter agrees: "I know Wendell Johnson was an extremely ethical and moral person, and if something happened to those children it was because of something he did not foresee." Jim Dyer, "Ethics and Orphans: the 'Monster Study,"' San Jose Mercury News, June 11, 2001.

20. For any readers totally unaware of the reputation of Dr. Wendell Johnson for ethical, kindly and thoughtful behavior toward others, a few quotes and a Web site link may provide some insight.

Shortly after the Mercury News articles the former director of the Indiana University Speech, Language and Hearing Clinics wrote, "Johnson ... completed a formidable body of scientific research that gave hope to millions. Johnson was a remarkable personality who got along well with everyone. His stuttering clients, their families, university students, etc. all loved him. He was such a kind man. There was nothing that he would ever have done intentionally to harm anyone." Robert L. Milisen, "Johnson Was a Great Man," Iowa City Press-Citizen, June 27, 2001, p. 11A.

Former colleague Dr. D. C. Spriestersbach told Jim Dyer, "Wendell Johnson was a most revered and universally loved man." Jim Dyer, "Ethics and Orphans: The 'Monster Study,"' San Jose Mercury News, June 11, 2001.

Five speech pathologists wrote, "Recently have come comparisons of Dr. Wendell Johnson to Timothy McVeigh and Adolf Hitler. This has made us so angry. Johnson has no similarities to such individuals. He was a fine man, dedicated to helping solve the problems of stuttering, not only in the United States but also in the world. All that has been accomplished in this emotion-laden journalism is the trashing of a well-earned reputation of one of the most decent men who ever lived."

Judith Knabe, Peggy Gingerich, Nancy Fesenmeyer, Jill Lorack, and Becky Hubbard, "Wendell Johnson was a Fine Man: Judge Him in Light of the Times," Iowa City Gazette, July 5, 2001, p. 7A.

Even while issuing the University's apology to surviving subjects of the Tudor study, the University's Vice President for Research, David Skorton, who was very critical of the study's ethics, added, "In no way does this statement denigrate Wendell Johnson's very important and contributory career. He was a huge, positive factor in the field of speech pathology and in the lives of many, many patients with speech disorders." Kathryn Ratliff, "UI Apologizes for Research on Stuttering," Iowa City Press-Citizen, June 14, 2001, p. 1A.

A former student and colleague wrote of him after his death, "He was much beloved, even by those in Iowa City who knew little of his international recognition and awards. To them he was a neighbor, a great public speaker, teller of stories, composer of songs and limericks, personal counselor and active member of civic organizations. When he died, in addition to the stories in national news magazines and newspapers, the family was flooded with thousands of letters from individuals around the world, formerly unknown to them, who had been touched in some way by his life and love of humankind." Dean Williams, "Remembering Wendell Johnson," Et cetera, Winter 1992-93, p. 433, reprinted from the Daily Iowan, May 4, 1992.

The man I knew seemed exceedingly gentle and incapable of angering. His disposition had a very calming effect in otherwise trying times .... A few days before he died in August 1965, I received a very long letter with remarks on his health status, general philosophizing, and the wish that he could be 50 white rats so his physicians could do the kind of research on his condition that could provide some answers, a typically Johnsonian approach to life.... To sum up the Johnson I knew, my best memories are of a pleasant, jovial, dedicated man whose love of life and of people was evidenced in his every act. (Joseph L. Stewart, "Wendell Johnson: A Memoir," Et cetera, Winter 1992-1993, p. 424.)

21. See also Dorothy Moeller, Speech Pathology and Audiology: Iowa Origins of a Discipline (Iowa City: University of Iowa, 1975), pp. 61-62.

22. "As you can see, the woman 'featured' in Dyer's articles actually got more fluent over the four months." Dr. Robert W. Quesal, E-mail to author, June 21, 2001, with accompanying supporting analysis of the Tudor study data.

23. Dr. Wendell Johnson's masters thesis, Because I Stutter (Appleton, 1930), was one of the very few masters theses to be commercially published. Although out of print, it is available on the Web as a link from http://www.nicholasjohnson.org/wjohnson.

24. The masters thesis is a very thin document consisting of no more than a handful of pages of commentary and conclusions along with a reproduction of the data. Moreover, twenty-first century critics of the study argue that the data it contains simply do not support its few conclusions. Few masters theses in any field are likely to receive much attention and subsequent citation, so it is not remarkable that the Tudor study did not. However, in this case it is at least possible that an additional reason for the little attention it received over the years is that earlier researchers saw in it the same flaws seen by its critics a half-century later. In any event, given that it was cataloged in the University of Iowa Library, as accessible as any other masters thesis over the years, and checked out many times, this seems a much more probable explanation than that it was "suppressed."

25. Standards change over time with regard to many aspects of human behavior. Language widely used without formal objection at one time, say, the way some men talked about women during the 1950s, may become the basis for everything from social shunning to law suits for sexual harassment decades later.

The writer was a human subject in a University of Iowa clinical trial of a new drug. It is apparently standard practice to require human subjects, who are taking at least some risk for no pay in a project from which everyone else is profiting, to sign a couple of waivers. One absolves the institution not only from any liability for harm, but even liability for negligence. The other seems especially uncaring. The testing institution, a major research hospital, expressly leaves human subjects harmed by the study entirely on their own in their search, and ability to pay, for restorative medical care. Is this ethical? Under 2001 standards apparently it is. Will there be another view of the matter in the future? One would hope so. And, if so, will moral outrage then be expressed regarding those who utilized such overreaching waiver language today? One would hope not.

By mid-twenty-first century a majority of the world's population may conclude that today's animal rights activists were right all along. Those not vegetarians in 2001 may find their eating habits subsequently described as "barbaric" some 62 years later because of their earlier willingness to slaughter animals and eat their flesh. They may even

become named defendants in mock trials for their participation in this animal genocide. PETA (People for the Ethical Treatment of Animals) has for years objected to the use of animals in research, http://www.peta.org and see especially, "Cruel Science," http://www.peta.org/cmp/ sci.html [http://www.peta.org.uk/cmp/viv.asp] and "Stop Animal Tests," http://www.stopanimal tests.com [http://www.stopanimaltests.com].

The citizens of many countries already regard Americans as barbarians because we continue the death penalty, a practice they believe violates the United Nation's Universal Declaration of Human Rights (1948), http://www.un.orgt/Overview/rights.html [http://www.un.org/Overview/rights.html], as President George W. Bush discovered during his 2001 European trip.

Those who are insistent on applying the standards of their day to the human subjects research of others in the 1920s and 1930s might at least want to consider the consequences of doing so. To apply early twentyfirst century standards to early twentieth century research will mean that, for the next few years, professional societies, research universities, and other institutions will be issuing apologies to the thousands of experimental subjects of that time, if not writing checks for billions of dollars as well. Indeed, one journalist has already seriously suggested they should be doing just that. John Carlson, "U of I, State Owe Yesteryear's Orphans the Whole Truth," Des Moines Register, June 17, 2001, p. 1B.

26. Although best known as a speech pathologist, Dr. Wendell Johnson was also one of the founders of the International Society for General Semantics. His book, People in Quandaries, first published in 1946, was still available in 2001.

27. It was December 2002 before the State of Oregon first acknowledged that its program of forced sterilization was no longer acceptable. From 1917 through 1983 over 2500 Oregonians, "girls in reform school, people in mental institutions and poor women selected by welfare workers," were sterilized. AP, "Ore. Gov. Apologizes for Sterilization," December 2, 2002.

28. Gina Kolata, "U.S. Suspends Human Research at Johns Hopkins After a Death," The New York Times, July 20, 2001. The most detailed reporting regarding the Johns Hopkins controversy was, not surprisingly, in The Baltimore Sun.

Jonathan Bor and Tom Pelton, "Hopkins Study Was Exempt from FDA; Asthma Project Tested Function of Lungs, Wasn't a Drug Trial," The Baltimore Sun, June 22, 2001.

Jonathan Bor, "Hopkins Panel to Study Death of Volunteer," The Baltimore Sun, June 23, 2001.

Eric Siegel and Diana K. Sugg, "Management of Crisis Key to Public Trust," The Baltimore Sun, June 24, 2001.

Douglas M. Birch and Gary Cohn, "The Changing Creed of Hopkins Science; What Once Was Heresy Is Now the Mission: A Partnership with Business to Advance Research," The Baltimore Sun, June 25, 2001.

Editorial, "Death at Research Center; Hopkins Study: Volunteer's Death Raises Questions About Protection, Role of Human Research Subjects," The Baltimore Sun, July 1, 2001.

Editorial, "Of Profits and Patients; Medical Research: Academic Institutions Face Huge Conflicts of Interest as They Pursue Business Ties," The Baltimore Sun, July 2, 2001.

Tom Pelton, "Asthma Study Violated Safety Rules, FDA Says; Hopkins Experiment Ended with Death of Volunteer, 24," The Baltimore Sun, July 3, 2001.

Tom Pelton, "Respected Doctors Confront a Tragedy; Experiment: With a Research Subject's Death, Two Distinguished Scientists Confront What Colleagues Say Is the Worst Imaginable Outcome," The Baltimore Sun, July 8, 2001.

Editorial, "An Unnecessary Death; Hopkins Study: Tighter Controls on Human Research Projects Needed; Institution's Inquiry Finds Faults," The Baltimore Sun, July 18, 2001.

Jonathan Bor and Tom Pelton, "U.S. Halts Hopkins Research; Most Experiments on Human Subjects Ordered Suspended; Federal Funding Withheld; Oversight Agency Decries Safety Lapses in Volunteer's Death," The Baltimore Sun, July 20, 2001.

Michael Stroh, "Shutdowns Have Wide Effect on Programs; Cuttingedge Treatments Become Unavailable; Funding, Name Damaged," The Baltimore Sun, July 20, 2001.

"Hopkins Calls Federal Agency's Action 'Precipitous,"' The Baltimore Sun, July 20, 2001.

Editorial, "Protecting Humans in Research; Hopkins Shutdown: Government Is Right to Be Concerned, but Wrong to Punish Researchers so Harshly," The Baltimore Sun, July 21, 2001.

Diana K. Sugg, "Despite Suspension, Hopkins Researchers Continue Vital Tests; Doctors, Nurses Rush to Reassure Patients, Appeal Research Bans," The Baltimore Sun, July 21, 2001.

Tom Pelton and Jonathan Bor, "Hopkins Vows to Improve Research Safety; Changes Outlined in Letter School Sent to Federal Agency; 'It's Been Utter Confusion;' Lifting of Suspension Sought by Next Week," The Baltimore Sun, July 21, 2001.

29.  See also, "UI Apologizes for Stuttering Study," San Jose Mercury News, June 14, 2001; "University Apologizes for '39 Experiment," Chicago Tribune, June 14, 2001, p. 19. University of Iowa President Mary

Sue Coleman was quoted as saying, "There's no way I can condone that kind of research." Jim Jacobson, "UI Denounces Experiment," Iowa City Gazette, June 13, 2001, p. 1A. Richard Hurtig, Chair of the UI Department of Speech Pathology and Audiology was quoted as saying that "this is not the kind of study anyone today would even think of proposing or would an institutional review board authorize." Kathryn A. Ratliff, "UI Stuttering Study Doubted," Iowa City Press-Citizen, June 12, 2001, pp. 1, 7.

30. James Dyer, "The Twisted Experiment of Dr. Wendell Johnson," The Iowa City Mercury, April 1992, p. 1. Franklin Silverman reported on the Tudor study as early as 1988 in the Journal of Fluency Disorders. It was also the subject of a novel by Jerry Halvorson in 1999.

31. The suggestion that today's research institutions and individuals possess a moral superiority to their predecessors, that there are standards in place today to prevent any possibility of the problems of earlier times, is a triumph of arrogance over experience. The abuses detailed in the DHHS Office of Inspector General's report, "Protecting Human Research Subjects," were published as recently as April 2000. It is available online in pdf format,
http://www.oig.hhs.gov/oei/reports/oei-01-97-00197.pdf.

The NIH requirement of "education on the protection of human research participants for all investigations" was established even later, in October 2000. One institutional response has been a simple online summary presentation of some highlights that researchers are required to scan. An example is the University of Michigan's "Protection of Human Research Subjects Computer-Based Training for Researchers." A comparable online training program is The National Cancer Institute, "Human Participant Protections Education for Research Teams," http://cme.cancer.gov/clinicaltrials/learning/humanparticipant-protections.asp (requires free online registration). Stanford University offers a similar "Use of Human Subjects in Research: History" tutorial module, http://www.stanford.edu/department/DoR/hs/History/his01.html [http://www.stanford.edu/dept/DoR/hs/History/his01.html].

32. Less than one week after the Johns Hopkins revelations, the Des Moines [Iowa] Register headlined on page one: "U of I Faces Probe Over Research." The story noted that, among other things, " the issues raised . . . focus on internal review boards that sometimes rushed approval of changes in experiment guidelines and did not document

procedures in enough detail." Colleen Krantz, "U of I Faces Probe Over Research," Des Moines Sunday Register, July 22, 2001, p. 1.

A letter to the university in 1999 from the Food and Drug Administration referred to its reviews at the university in 1992, 1995, and 1998. Each of those reviews involved violations that "are of particular importance because many of them have been observed during past inspections where corrections were promised by your institution but not implemented." According to the news story, an FDA spokesperson said it is "fairly rare to see issues remain unresolved after several visits, as inspectors suggested was the case at the University of Iowa."

A spokesperson for the university tried to minimize, even trivialize, the violations as "minor administrative details." Said another, "the more complex the research the greater the likelihood there are some failures because we are, after all, all human." Thus was it revealed that the standard of at least some educational administrators is to be forgiving of their own ethical and legal errors, but morally outraged by those of their predecessors.

The same University spokesperson who joined in the chorus of moral outrage, saying that the Tudor study was "unfortunate and indefensible," was later quoted in a local paper's follow-up on the Register expose of the University's own failings. The Register reported that, "The university calls into question both the headline and its [the story's] placement as Sunday's leading story," while acknowledging that the story itself was "mostly accurate if read in its entirety."

The University of Iowa's continuing tenacious campaign against the Des Moines Register's headline and placement was represented in a letter to the editor with a headline presumably finally thought acceptable, David Skorton, "No Action Pending Regarding U of I Research," Opinion, Des Moines Register, August 5, 2001, p. 9A.

The contrast between this protest by the University over the headline and placement of a story it concedes was "balanced and mostly accurate," and its response to the media's unethical and broadside attacks on the 1939 Tudor study are striking. In the latter case it not only failed to protest anything about the stories, whether content, headlines, or placement, it actually joined in the moral castigation of its own former faculty member.

There was, of course, no reference to how "unfortunate and indefensible" it is that clear governmental standards have not been complied with in spite of repeated government investigations and university

assurances of correction. See generally, George Pappas, "Gov't Probe of UI Research 'Minor,"' The Daily Iowan, July 23, 2001, p. 1; George Pappas, "UI Fires Back at Register's Headline," The Daily Iowan, July 24, 2001, p. 1; Ryan Foley, "'Monster Study' Reporter Under Fire," The Daily Iowan, July 26, 2001, p. 1.

33. One of many possible consequences of such a hurried rush to public relations offensive is its impact on litigation. With potential plaintiffs waiting in the wings, to launch a gratuitous assault on a former faculty member as someone who supervised "a study that should [n]ever be considered defensible in any era," however much thought to be potentially useful in the public relations short run, is a somewhat reckless gamble with a state university's resources.

34. As one speech pathologist has noted, "Even more startling than the [Dyer] article itself was its front-page placement and space allotment, this for an article appearing to provide no useful information whatsoever to the public.... How much more useful would an article about stuttering problems have been if readers had instead been informed of resources.... As a speech pathologist, I am particularly disheartened that the opportunity to help people prevent and treat stuttering problems was squandered in what seems to be efforts to engage in sensationalism, for what purpose or purposes one can only speculate." Ellen-Marie Silverman, "Paper Missed Chance to Better Inform Readers," Milwaukee Journal Sentinel, June 18, 2001, p. 10A.

35. See, for example, Dorothy Moeller, Speech Pathology and Audiology: Iowa Origins of a Discipline (Iowa City: University of Iowa, 1975); Wendell Johnson, Because I Stutter (New York: Appleton, 1930); Wendell Johnson, People in Quandaries (New York: Harper & Brothers, 1946); Wendell Johnson (Ed.), Stuttering in Children and Adults (Minneapolis: University of Minnesota Press, 1955); Wendell Johnson (Ed.), The Onset of Stuttering: Research Findings and Implications (Minneapolis: University of Minnesota Press, 1959).

36. There are numerous ethical issues in human subjects research truly deserving of academic reflection and public education by journalists. Here is but one example.

An April 2000 report of the DHHS Office of Inspector General, "Protecting Human Research Subjects," notes a great many "disturbing inadequacies." One, it says, is that "The increased commercialization of

research and the growing importance of research revenues for institutions heightens the potential for conflicts of interest in clinical research."

On August 5, 2001, the Washington Post reported that overreaching by pharmaceutical companies was so bad that "editors at the world's most prominent medical journals, alarmed that drug companies are exercising too much control over research results, have agreed to adopt a uniform policy that reserves the right to refuse to publish drug company-sponsored studies...." Susan Okie, "A Stand for Scientific Independence: Medical Journals Aim to Curtail Drug Companies' Influence," Washington Post, August 5, 2001, p. A1. (The story was reported in Iowa City as, "Journals Adopt New Policy: Editors Aim to Clip Drug Companies' Influence," Iowa City Press-Citizen, August 5, 2001, p. 1A, and "Medical Journals Battle Drug Firms' Grip on Research," Iowa City Gazette, August 5, 2001, p. 3A.)

The author quotes "several observers of biomedical studies who have become alarmed about the influence of the drug industry on the integrity of medical research." A University of California professor of clinical pharmacy is quoted as saying that if negative results are published "you can still get pressure put on you for fear that you won't get any future funding." Companies not only control access to data, but may even control who writes the papers, or ghost writes them for the academics who "are too busy to take all the time needed to create the publication." She cites examples in which reports of side effects, no benefits, or cheaper alternatives have led to blocked publication or even lawsuits.

One would think the significance of an ethical issue of this magnitude would be worth at least as much media attention as a masters thesis from 1939.

37. Compare Greg Mitchell, "Reporters Trail Badly (Again) in Annual Poll on Honesty and Ethics," Editor and Publisher, December 7, 2004 ("Once again, newspaper reporters score poorly in the annual Gallup Poll ... on 'honesty and ethical standards' in various professions ... lower than bankers, auto mechanics, elected officials, and nursing-home operators"), http://www.editorandpublisher.com/eandp/news/article_display.jsp?vnu_content_id=1000732750 [subscription required] with Michelle Z. Spielman, "U.S. Journalists Get High Marks on Ethics, Study Finds; LSU and University of Missouri professors analyze the 'moral minds' of journalists and advertisers," LSUs Biweekly Newsletter for Faculty & Staff, 21(12), February 25, 2005, http://www.Isu.edu/lsu-today/050225/pageone.html [http://www.lsu.edu/lsutoday/050225/pageone.html], and Kelly McBride, "Journalists: More

Ethical than People Realize?," Poynteronline, December 17, 2004, http://www.poynter.org/content/content_print.asp?id=75962&custom=.

38. "As you can see, the woman `featured' in Dyer's articles actually got more fluent over the four months." Dr. Robert W. Quesal, E-mail to author, June 21, 2001, with accompanying analysis of the Tudor study data.

39. The Mercury News ethics policy, violated by the journalist, provides:

Under ordinary circumstances, reporters or photographers ought to identify themselves to news sources. There might be times, however, when circumstances will dictate not identifying ourselves. Only the Executive Editor or Editor may approve such exceptions. (Mercury News Ethics Policy, September 21, 2004, http://www.grandforks.com/mld/mercurynews/contact_us/about/9723906.htm).

40. The quote is from a promotional, public relations release from Patty Wise, the Mercury News' Public Relations Manager, distributed nationally by the PR Newswire Association, "to medical, family and features editors," June 8, 2001. It made both stories available to other papers prior to their publication in the Mercury News, thus ensuring the re-enforcing impact of the national media blitz.

41. The false claim that the study was "revealed for the first time" in the Mercury News' stories of 2001 is particularly ironic and unethical given that the stories' author, Jim Dyer, was himself one of those who wrote about it earlier in the Iowa City Mercury. James Dyer, "The Twisted Experiment of Dr. Wendell Johnson," The Iowa City Mercury, April 1992, p. 1. Franklin Silverman reported on the Tudor study as early as 1988 in the Journal of Fluency Disorders. Franklin Silverman, "The monster study," Journal of Fluency Disorders, 13, 225-231 (1988). (For a different view of the Tudor study and its media coverage from the Silverman family see the quote from Ellen-Marie Silverman, "Paper Missed Chance to Better Inform Readers," Milwaukee Journal Sentinel, June 18, 2001, p. 10A, note 34, above.) The study was also the subject of a novel by Jerry Halvorson in 1999, Jerry Halvorson, Abandoned: Now Stutter My Orphan (1999) (with foreword by Franklin Silverman).