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Human Subjects Research Ethics
Given the widespread and distorted national media attention given to the 1939 Tudor masters thesis during the years 2001-2003, those who may be interested in a little more balanced approach to the issues may want to read at least the first introductory pages of Nicholas Johnson's "Retroactive Ethical Judgments and Human Subjects Research."
It was first presented as a paper, "Retroactive Ethical Judgments and Human Subjects Research: The 1939 Tudor Study in Context," at the Symposium on Ethics and The Tudor Study: Implications for Research in Stuttering, sponsored by the Ph.D. Program in Speech and Hearing Sciences at the City University of New York, December 13, 2002.
It was subsequently published as Chapter 9 in Ethics: A Case Study from Fluency, Robert Goldfarb, editor, December 2005 ("Retroactive Ethical Judgments and Human Subjects Research: The 1939 Tudor Study in Context"), and available here as a pdf file from that link. This will be the source most readers will want to use for most purposes. A couple of notes:
The first endnote for the chapter in Ethics makes reference to a page at this URL.This is a 5 MB pdf file, so it may take a little while to download. If you do not have the Adobe Reader software necessary to view pdf files on your computer, you may obtain a free copy from http://www.adobe.com/products/acrobat/readstep2.html.The chapter is copyright by Plural Publishing, Inc., of San Diego and Oxford. It is made available here as a matter of "fair use" for noncommercial, educational purposes only, to the extent it is relevant to the Wendell A. L. Johnson Memorial Home Page and the related commentary of Nicholas Johnson. Obviously, there is an implied license to download and read the material. An individual reader may make a single copy for his or her personal use. Quotations may be taken and used within the boundaries of "fair use." However, the making of multiple copies, or uses in any way "commercial," require the prior approval of Plural Publishing, which may be reached via its Web page at http://www.pluralpublishing.com/.
By definition, the book chapter, and its faithful reproduction here, cannot contain "hot links" to the URLs they reference. For most readers this will be a reality of little consequence. They may have little interest in even reading the endnotes, let alone linking from them to the cited material."This chapter is supported by a Web site at http://www. nicholasjohnson.org. [As you now know it is, in fact, the page where you are: 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."
However, for the benefit of researchers, scholars and the generally curious, a duplicate of the chapter's "References and Endnotes Only" has been reproduced as an html document. In it, the links are active and, for those that are not, either an updated hot link has been inserted in brackets, or there is a bracketed notation that the material is apparently no longer available on the Internet. Of course, as a printed document, many of the endnotes do not include URL references, and thus have no links.
There is other reference material available as links from here that may be of interest:
We regret that we are unable to maintain updating of all the links in these "other references." The documents are merely provided here as historical references for such use as they may provide.The earliest version was a reaction to the San Jose Mercury News stories, uploaded to the Web as "Retroactive Moral Judgment and the Evolution of Ethics in Human Subjects Research: A Case Study in Context," June 17, 2001 (with revisions through October 10, 2002).Additional related material, along with sources, was uploaded as "Cites, Sites, Sources and Notes," June 30, 2001 (and updated July 9, 2001).
Following this there was an "Epilogue" uploaded July 30, 2001.
Substantial excerpts from Nicoline Grinager Ambrose and Ehud Yairi, "The Tudor Study: Data and Ethics," American Journal of Speech-Language Pathology, vol. 11, 190-203, May 2002, were uploaded to the Web site August 27, 2002.
The paper as originally presented at CUNY, December 13, 2002.
A couple of related and relevant articles in the eastern Iowa Gazette are also linked -- Tom Owen, "When Words Hurt: Stuttering Story Missed the Mark" and "UI Professor's Son Defends Him, Research," both July 13, 2003 -- as is Dr. Michael Flaum's "Research Did Not Cause Stuttering," Daily Iowan, September 4, 2002.
-- N.J., March 12, 2006