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. Author manuscript; available in PMC: 2007 Mar 16.
Published in final edited form as: J Health Care Poor Underserved. 2006 Nov;17(4):716–733. doi: 10.1353/hpu.2006.0130

Table 2.

DETAILED DESCRIPTIONS OF EIGHT STUDIES INCLUDED IN THE LITERATURE REVIEW

Authors Sample Population Objectives Outcomes Limitations
Corbie-Smith, Thomas, Williams, and Moody-Ayers, 1999 N=33
Location: Atlanta, GA
M=10
F=23
AA=33
Explore the reasons for low participation in clinical trials among AAs (attitudes and beliefs towards informed consent, knowledge of the USPHSSST, real/perceived examples of medical abuse, risks and benefits of participation)
  • Few participants could recount specific details of the USPHSSST

  • Participants were cautious about trusting government sponsored research

Focus group results are intended to generate, rather than test hypotheses. Participants were interviewed at only 1 location; results may not be generalizable to other locations.
Green, Partridge, Fouad, Kohler, Crayton, & Alexander, 2000 N=103
Location: Jefferson, Greene, Macon, Cherokee, Barbour, Dallas, Madison, Mobile, & Montgomery County, AL
M=31
F=72
AA=103
Examine factors related to minority participation and retention in clinical cancer trials
  • All participants were aware of the USPHSSST.

  • Inaccurate information about the study was prevalent among the focus group participants.

  • Most participants indicated their awareness would not affect their decision to participate in clinical trial.

A convenience sample was utilized for the study; results may not generalize to all African Americans. The majority of the sample was female. The focus groups were conducted with different moderators, which may have influenced responses.
Freimuth, Quinn, Thomas, Cole, Zook, & Duncan, 2001 N=60
Location: Los Angeles, Chicago, Washington, and Atlanta
M=20
F=40
AA=60
Examine knowledge and attitudes toward medical research, knowledge of the USPHSSST, and reactions to Miss Ever's Boys
  • The majority of participants were aware of the USPHSSST.

  • Participants lacked specific details of the study events.

  • Respondents' negative attitudes towards participation were often contributed to the USPHSSST.

One of the focus groups in Chicago did not take place. Finding a representative sample was not the goal of recruitment.
Bates & Harris, 2004 N=215
Location: Southeastern states
M=127
F=86
Ref=2
AA=118
W=71
H=15
O=l1
Investigate the use of the USPHSSST as an emergent theme in public discussion
  • Only AA participants mentioned the USPHSSST.

  • Awareness did not always result in unwillingness to participate.

  • The USPHSSST did make AA participants suspicious of research

Results may not be generalizable. Income of the group differs from the median for the state.
Green, Maisiak, Wang, Britt, & Ebeling, 1997 N=421
Location: Jefferson County, AL
M=206
F=215
AA=218
W=208
To report the effects of the USPHSSST on participation in health promotion activities and research studies.
  • AAs reported significantly less interest in participating in health research due to the USPHSSST than Whites.

  • Slightly more AAs were aware of the study than Whites.

Results may not be generalizable. Respondents’ knowledge may be influenced by their location, Knowledge of the USPHSSST was not assessed.
Sengupta, Strauss, DeVillis, Quinn, Devillis, & Ware, 2000 N=301
Location: Durham, NC
M=83
F=218
AA=301
Examine a multidimensional construct of institutional distrust and other factors that may influence willingness to participate in AIDS research
  • The majority of the sample was aware of the USPHSSST.

  • The USPHSSST was one of several contributing factors to distrust.

  • Distrust was a strong predictor of unwillingness to participate in AIDS research.

Random sampling was not utilized. Results may not be generalizable outside of Durham, NC. Causation cannot be implied from cross-sectional data. The SEM model did not have an excellent fit to the data. The model used is one of several plausible models.
Shavers, Lynch, & Burmeister, 20002 N=198
Location: Detroit, MI
M=83
F=96 (includes AA and Whites)
AA=91
W=88
H=8
O=6
Ref=5
Examine racial differences, knowledge of the USPHSSST and the influence of this knowledge on willingness to participate in medical research
  • Awareness was significantly higher in AAs than Whites.

  • The majority of respondents were misinformed about how the study subjects got syphilis.

  • Awareness linked to distrust negatively impacts AA’s willingness to participate.

The census data used for sampling was 10 years old; newly built homes may be overlooked. Low response rates inhibit ability to generalize data.
Brown & Topcu, 2003 N=438
Location: Detroit, MI
M=143
F=295
AA=216
W=222
Determine if older AAs are less likely than Whites to express willingness to participate, given knowledge of the USPHSSST and fatalistic beliefs
  • AAs were significantly more aware of the USPHSSST than Whites.

  • Awareness of the study influenced AA's and White's "behavioral intention" of participation equally.

Behavioral intention does not necessarily equate to actual participation.
2

Two subsequent publications using the Detroit PMSA database were published by Shavers et al. in 2001 and 2002.

M = male

F = female

USPHSSST = U.S. Public Health Service Syphilis Study at Tuskegee

AA = African American