142nd APHA Annual Meeting and Exposition

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301465
Comparative Impact of two Tuskegee Syphilis Study events on the Mistrust-In-Research (MIR) field of study: The 1972 news discovery headlines vs the 1981 publication of the history book 'Bad Blood'

142nd APHA Annual Meeting and Exposition (November 15 - November 19, 2014): http://www.apha.org/events-and-meetings/annual
Monday, November 17, 2014

Anthony Congiusta , Department of Epidemiology, NYU College of Dentistry, Brooklyn, NY
Ralph Katz , Department of Epidemiology, NYU College of Dentistry
Tiffany Tien , NYU College of Dentistry
Mariel Chetcuti , NYU College of Dentistry
Julia Lee , NYU College of Dentistry
Kiara Hill
Richard McGowan
Bianca Dearing
Objective: The purpose of this Mistrust in Research (MIR) component of the ongoing Tuskegee Legacy Project was to explore which ‘trigger event’ may have led to the existing body of ‘mistrust in research’ literature, i.e., was the MIR field of study a ‘legacy’ of the USPHS Syphilis Study at Tuskegee, i.e., aka the Tuskegee Syphilis Study (TSS)?

Methods:A comprehensive systematic search of published literature between 1900-2011 by a biomedical librarian identified 794 abstracts related to MIR.  Initially, a specially developed Mistrust Abstract Categorization form was used to identify 315 original research MIR articles.  Subsequently, a Relevant Article Abstraction Categorization (RAAC) form was used to abstract 16 data items from the retrievable 279 relevant MIR research articles, of which 192 (~70%) were categorized as original research articles.  Finally, a RAAC histogram of these 192 original research MIR articles was constructed to show the number of original research MIR articles published per year to ‘see’ whether the resulting histogram supported the hypothesis that the published MIR research literature was, indeed, a legacy of the USPHS Syphiis Study at Tuskegee (TSS). 

Results: The major finding, as revealed by the RAAC histogram, showed the first original research MIR articles appearing in 1993 with a steady rise through 2005, leading to a sustained annual high level of published MIR articles (~25 per year) from 2006-2011.  Other detailed findings for these 192 original research MIR articles were: 1) 94.8% were conducted in the United States; 2) 28.9% collected some quantitative data while 71.1% collected qualitative data only; and, 3) the TSS was not mentioned directly in the majority (60.2%) of these articles, and only studied directly as a variable of interest in 11.9% of these articles. 

Conclusion: Assuming the typical 8-12 year lag period between an ‘incident event’ and subsequent wave of published articles, the findings suggest that the likely key incident event related to the TSS that led to the Mistrust in Research (MIR) literature wave was the publication Bad Blood by Jim Jones, the first definitive TSS history book, in 1981 rather than the initial media disclosure of the TSS in 1972.

Learning Areas:

Conduct evaluation related to programs, research, and other areas of practice
Diversity and culture
Epidemiology
Ethics, professional and legal requirements

Learning Objectives:
Describe the impact that the 1972 media discovery announcement revealing the USPHS Syphilis Study at Tuskegee Study had on the subsequent development of the Mistrust-in-Research line of study, as compared to the impact from the 1981 publication of Jim Jones’ definitive history book, ‘Bad Blood’.

Keyword(s): Ethics, Vulnerable Populations

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I have been a member of Dr. Ralph Katz's 'Mistrust in Research' research project for approximately 1.5 years. I am a second-year dental student at NYU College of Dentistry. I have worked on the MIR project before and during my dental school career. My scientific interests include public participation in research studies, health care, and oral surgery.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.