Fill - Free fillable African Americans And Trust Levels With Age (Eastern Michigan University) PDF form

African Americans and Trust:

Examining Clinical Research Trust Levels Based on Age

Keri F. Kirk

Thesis

Submitted to the College of Health and Human Services

Eastern Michigan University

in partial fulfillment of the requirements

for the degree of

MASTER OF SCIENCE

Clinical Research Administration

Thesis Committee:

Stephen A. Sonstein, PhD, Chair

Ronald Woods, JD

Carolyn M. Sampselle, PhD, RNC, FAAN

August 27, 2010

Ypsilanti, MI

Acknowledgements

I would like to acknowledge all of the participants who provided invaluable feedback for this

project.

I would also like to extend my gratitude to the abundance of family members and friends

who helped to disseminate the information about this study, and those who provided prayers,

support, and encouragement throughout this entire process.

I would also like to acknowledge my Thesis Committee: Dr. Stephen Sonstein, Dr. Ronald

Woods, and Dr. Carolyn M. Sampselle. Without your leadership and guidance this project would not

have been possible.

Abstract

African American mistrust in clinical research has been cited as a barrier to participation.

The decision not to participate often depends on personal knowledge or experiences that shape

one’s views toward research. This lack of participation limits the generalizability of research results

for African Americans.

Using an established instrument to measure trust and qualitative analysis, this study sought

to determine whether there were differences in trust level towards clinical research based on age for

African Americans. Furthermore, the study examined whether the level of education, type of

employment, knowledge of the Tuskegee Syphilis study, experience with cultural prejudice or racism,

or perceived health status had influence on age-specific trust levels. Analysis of four age groups (18-

30, 31-40, 41-50, 51-74) showed that there were distinct differences in trust level and attitudes

toward clinical research. The 41-50 year-old age group was the least trusting of clinical research

overall.

TABLE OF CONTENTS

Acknowledgements………………………………………………………………………………....ii

Abstract………………………………………………………………………………………...….iii

Chapter 1: Introduction and Background………………………………………………...…………1

Mistrust: Where did it begin?...............................................................................................................3

Problem Statement, Justification, and Significance……………………………………….…7

Study Purpose and Objective………………………………………………………………8

Research Questions………………………………………………………………………..9

Chapter 2: Review of Related Literature…………………………………………………………...10

Chapter 3: Research Design and Methodology……………………………………………………13

Chapter 4: Presentation and Analysis of Data…………………………………………………….16

Demographic Information……………………………………...…………………………16

Survey……………………………………………………………………………………..19

Trust Scores…………………………...………………………………………………….26

Chapter 5: Summary, Conclusions, Inferences, and Recommendations for Further

Research and Action………………………………………………………………………28

Research Questions Addressed……………………………………………………………28

Conclusions and Recommendations………………………………………………………37

References………………………………………….……………………………………………..41

Appendix A Permission Letter……………………………………………………………………48

Appendix B Sample Questionnaire………………………………………………………………..49

LIST OF TABLES

Table Page

1 Percentage of Respondents Answering “Yes” to Key Survey

Questions by Age Group for African Americans……………………...………………21

2 Significant Short Answer Themes for Questions 1d/1d part B

from Table 1, by Age Group for African Americans…………………………………..23

3 Unique Short Answer Themes Per Group for Question 1d/1d part B

by Age Group for African Americans……………………………………………...….24

4 Significant Short Answer Themes for Question 1e from Table 1

by Age Group for African Americans…………………………………………………25

5 Unique Short Answer Themes Per Group for Question 1e

by Age Group for African Americans…………………………………………………26

6 Trust Scores by Race………………………………………………………………….27

7 Participant Deception and Researcher Honesty Trust Scores

by Race and Age……………………………………………..……………………….27

8 Total Composite Trust Score by Race and Age……………………………………….27

LIST OF FIGURES

Figure Page

1 Age distribution of study sample by race………………………………………………….17

2 Education level by race……………………………………………………………………18

3 African American education by age……………………………………………………….18

4 Job classification by race…………………………………………………………………..19

5 Perceived health by race……………………...……………………………………………19

African Americans and Trust 1

Chapter 1: Introduction and Background

On June 10, 1993, the National Institutes of Health (NIH) Revitalization Act was signed

into law, mandating NIH-funded research projects to include women and minorities unless the

nature of the research justifiably excludes these groups (National Institutes of Health [NIH]

Guide, 1993). On March 9, 1994, the NIH issued guidelines outlining appropriate adherence to

the new law

and has since updated those guidelines to ensure the ethical justice is maintained,

and gender and race are balanced in clinical research (NIH Guide, 1994; NIH Guide

Amendment, 2001). Despite this effort, African Americans still represent a low percentage (3%-

20%) of the clinical trial participant population (Adams-Campbell, et al., 2004; Swanson & Ward,

1995).

The following causes for the lack of African American participation in clinical research

have frequently been established in literature: lack of knowledge, limited access to health care,

racial/ethnic discrimination, and fear (Shavers-Hornaday, Lynch, Burmeister, & Torner, 1997).

Other commonly cited barriers are broader health care system issues, negative public perception

towards research and researchers

(Freimuth et al., 2001), a lack of minority investigators (Diaz et

al., 2008), and religion (Advani et al., 2003). Additionally, much of the current literature points to

a lack of trust in the medical field or in physicians in general as the primary reason for low rates

of participation for African Americans (Bird & Bogart 2001; Corbie-Smith, Thomas, Williams, &

Moody-Ayers, 1999; Corbie-Smith, Thomas, & St. George, 2002; Doescher, Saver, Franks &

Fiscella, 2000; Hall et al., 2004). This lack of trust has been found to have roots in various places,

but nonetheless creates a difficult barrier for researchers to overcome for African American

recruitement.

African Americans and Trust 2

Barriers to clinical research participation can be barriers to effective treatment, mainly

because purpose of clinical research is to test new medical standards of care (Emanuel, Wendler,

& Grady, 2000). It also tests the safety and efficacy of new drugs and devices (Meinert, 1986).

Treatment for specific conditions cannot be generalized to a large, ethnically diverse group

without adequate representation of that group in clinical research (Advani et al., 2003; Diaz,

Mainous, McCall, & Geesey, 2008). This is partly because differences in the pathogenesis of

disease and response to treatment is thought to exist for various ethnic groups (Doherty, Tang,

& Detrano, 1999). For example, African Americans have been found to respond poorly to

several classes of antihypertensive agents, putting them at greater risk for complications from the

medication. Their representation in experimental studies can help to address these differences to

ensure safety and efficacious treatment (Armstrong, Crum, Reiger, Bennett, & Edwards, 1999;

Evelyn et al., 2001; Savitt, 1978).

Because of these pathogenetic differences, African Americans are affected by diseases

such as cancer, hypertension, atherosclerosis, diabetes, and end state renal disease in unique ways

(Doherty et al., 1999; Freedman et al., 1997; Freedman, Tuttle & Spray, 1995; Fregene &

Newman, 2004; Kizer et al., 2004). A study by Fregene and Newman (2005) revealed that

African American women and women from sub-Saharan Africa suffer disproportionately

compared to white women from an aggressive form of breast cancer, prompting speculation that

heredity factors can potentially explain the trending similarities for this group of women. Many

of the countries in focus for this study are in Western Africa where the European slave trade

originated in the 17

and 18

centuries. An estimated 66% of slaves brought to the United States

during the slave trade were from West African countries; therefore, many African Americans

and West Africans are currently thought to share similar genetic vulnerabilities (Fregene &

African Americans and Trust 3

Newman, 2005; Ijaduola & Smith, 1998). A lack of clinical research participation by blacks

therefore prevents further study surrounding effective treatment for these vulnerabilities.

Another reason that a lack of clinical research participation is harmful to African

Americans is that the mortality risk of various diseases affects this group at disproportionate

rates. Blacks account for 33% and 37% of all patients being treated for HIV and AIDS in the

United States, respectively. However, they represent only 23% of patients in clinical trials for

these diseases (Gifford et al., 2002). African Americans make up only 6% of cancer clinical trials,

but have higher mortality rates for breast, prostate, lung, and colorectal cancer than any other

ethnic group (Newman et al., 2005). More African Americans (10.6%) have diabetes than their

White counterparts (6.4%), which has implications for the higher rates of kidney failure and

coronary artery disease (Carter, Pugh, & Monterrosa, 1996; Perneger, Brancati, Whelton, & Klag,

1994).

Mistrust: Where is did it begin? Trust can be defined as one party’s confidence that they will

not be harmed or put at risk by the actions of another party, or confidence that no party will

exploit the other’s vulnerability (Jones & George, 1998). According to that definition, a lack of

trust in someone or something would mean that one was fearful of harm or exploitation by

another. Many African Americans have these fears toward clinical research. From where does

the lack of trust within African Americans originate? Historians and medical anthropologists

alike have amassed a convincing amount of evidence suggesting that the origin of mistrust spans

many centuries. This evidence has been preserved and re-circulated through time by historical

documents, public records, and oral accounts and can be attributed to the extreme caution that

surrounds many African American ideas about clinical research.

African Americans and Trust 4

Perhaps the origin of this fear and mistrust sprouted in the eighteenth and nineteenth

centuries, long before the transformation of medicine as a useful science. Medicine in the

Southern United States at this time was harsh, ineffective, and spontaneously experimental

(Washington, 2006). Slavery was an established normalcy in American society and was largely

based on the control and manipulation of blacks for capital gain. Many historical records reveal

that slaves were medically neglected and abused because they were powerless and invisible under

the law (Savitt, 1978). The immense emotional, psychological, and physical trauma that slavery

had on the African American people is beyond the scope of this project; however, the historical

accounts of this time can only begin to paint a portrait of mistrust for this group.

What if the origin of mistrust was inscribed in the self-recorded notes of Dr. James

Marion Sims, the renowned “father of American gynecology”? Dr. Sims pioneered the technique

of fixing vaginal fistulas suffered by women post partum, but did so at the expense of 11 slave

women purchased solely for experimentation. He operated on these women without the use of

anesthesia, claiming that the operation was not painful enough to make the effort. However, he

was found to have always used anesthesia when performing the painful technique on white

women (Washington, 2006).

What if the origin was the agony of a slave named Fed who endured unthinkable

temperatures as a subject in a heat stroke study. Fed was secured in an in-ground pit that was

covered and heated in order to test which medications effectively enabled him (and eventually

other slaves) to withstand the Southern heat. The test would end only after Fed passed out and

had to be revived (Harris, Gorelick, Samuels & Bempong, 1996).

African Americans and Trust 5

An additional theory could have originated with the accounts of “night doctors” that

stole black bodies from cemeteries and morgues in the late 1800s and early 1900s (Gamble,

1997). These stories were dismissed by Whites as folklore and fairytale until proof of grave

robberies began to surface; most notably, the 1989 discovery of over 10,000 human bones and

skulls underneath the basement floor of the Medical College of Georgia (Blakely & Harrington,

1997). Seventy-five percent of the bones were from African Americans, although they only

consisted of 42% of Augusta, Georgia’s, population. The bones were thought to have been used

between 1835 and 1912.

Or, it could have been knowledge about the North Carolina Eugenic Commission that

sterilized 8,000 mentally handicapped people in the 1930s. Five thousand of the 8000 were black

(Washington, 2006). Maybe it was knowledge about the cruelty inflicted upon Holmesburg

Prison inmates in the early 1900s at the hands of dermatologist Dr. Albert Kligman. Kligman

later invented the popular acne treatment, RetinA, largely based on experimental data from

mostly black prisoners (Washington, 2006).

The origin of mistrust could have very well sprouted from the most notorious case of

medical abuse: The Tuskegee Syphilis Study at the Tuskegee Institute in Macon County,

Alabama (Armstrong et al, 1999; Brandon, 2005; Bates, 2004; Freimuth et al., 2001; Gamble,

1997). The experiment spanned forty years, even after regulatory staples such as the Henderson

Act of 1943, the Nuremburg Code of 1947, and the Declaration of Helsinki in 1964 deemed the

study’s protocol unfit (Emanuel et al., 2000). This study was sponsored by the United States

Public Health Service (PHS) and included a study team that consisted of both Black and White

health professionals. Over 400 black men were admitted to this study over its forty-year life

under the guise that they would receive treatment for syphilis. The intent of the study was to

African Americans and Trust 6

research the long-term effects of the syphilis by keeping the men in the study until they

succumbed to the disease (Shavers-Hornaday et al., 1997). They were watched and monitored

closely by study staff, most notably Eunice Rivers, a black nurse who gained the participants’

trust. Some believe her relationship with the participants contributed to the high retention rate

of the study (Gamble, 1993). The men never received proper treatment for syphilis, even after

wide-spread use of penicillin in the 1940s revolutionized the treatment of bacterial infections.

Once information about the study began to surface in medical conference minutes, many of the

attempts to end the study by both white and black professionals were unsuccessful. In fact, the

study did not cease until it was leaked to the press in 1972, 40 years after its initiation (Shavers-

Hornaday et al., 1997; Dennis & Neese, 2000). Only after public knowledge of the study drew

outcry and scrutiny was there an attempt to reconcile wrong-doing of the researchers in the form

of a government act, The Belmont Report of 1979. This report established guidelines for

protection of human subjects in research (Emanuel et al., 2000).

More recently, the HeLa cell controversy has also become an account of history that has

raised considerable questions about the motives of research. In 1951, Henrietta Lacks, a young

mother, went to her doctor complaining of inter-menstrual bleeding. Upon examination, her

doctor found purple lesion, unlike anything he had ever seen. He biopsied the mass, which

would later prove to be a biologically unique and cancerous tumor. The cancer was resistant to

radiation and grew very aggressively in culture as well as in Mrs. Lacks, who died eight months

after her initial biopsy. This uniqueness in growth and resistance to radiation attracted many

researchers, all racing to find a cure for cancer. Thus, the HeLa cell line was formed and the cells

were distributed to biomedical companies to be massed produced. These cells led to a revolution

in cellular and molecular biology both intellectually and financially. The problem was that Mrs.

African Americans and Trust 7

Lacks never gave her consent for the distribution of her cells nor has her surviving family

received any financial compensation for any revenue generated by HeLa cell research (Jones,

McKusick, Harper, & Wuu, 1971). One of Mrs. Lacks’ daughters expressed her feelings about

financial compensation after seeing her mother’s cells under a microscope: “People always

gonna be makin money from them cells, nothing we can do about that. But we not gonna get

any of it” (Javitt, 2010).

Wherever the origin of mistrust has its roots and whatever portrait has been painted in

the minds of African Americans, many the aforementioned historical events and the knowledge

thereof are relative to each individual. Some may know more about the history of clinical and

medical research abuse than others. There are African Americans who know very little, if

anything, about clinical malpractice but are still less trusting of clinical research than the average

participant (Corbie-Smith, Thomas, Williams, & Moody-Ayers, 2002; Mouton, Harris, Rovi,

Solozarno & Johnson, 1997). Hence, the origin of mistrust could lie within the confines of an

unfavorable personal experience that tainted one’s view of what clinical research is truly

supposed to represent. Whether the unfavorable experience was on the job, in the classroom, or

at a hospital, the fact remains that broken trust must be mended and redeemed.

Problem Statement, Justification, and Significance

Much of the innovation and technology that will help develop the cures for currently

incurable diseases are being tested in clinical trials. Research and development for new drugs

and therapies consists of intensive testing before they are incorporated as part of the gold

standard of care for patients (Meinert, 1986). African Americans represent a range of 3%-20% of

clinical trial participation (Adams-Campbell et al., 2004; Swanson & Ward, 1995). It is critical

African Americans and Trust 8

that African Americans participate in clinical research so that results can be generalized to this

group (Advani et al., 2003; Diaz et al., 2008).

A majority of the literature references historical events and personal experiences as

precursors to participant apprehension and lack of trust. Personal experience with or

remembrance of historical events implies that there could be a link to the origin of mistrust with

the age of the individual. There is little research that intricately examines the characteristics of

African Americans who may have had negative attitudes or a lack of trust in the clinical research

process. Age is a particularly important area of interest given the strong link to history’s

influence on trust. Other than clinical trials or research studies involving the elderly cancer

population or clinical trials related to diseases that target the very young or the very old, there

were few studies focusing on the attitudes and beliefs of specific age groups regarding clinical

research trust levels.

Study Purpose and Objective

This study was conducted to determine whether different age groups of African

Americans have different levels of trust in the clinical research process and to examine

differences for those reasons. Trust levels were determined using the Trust in Medical

Researchers Scale (Mainous, Smith, Geesey & Tilley, 2006). The secondary objectives were to

determine whether or not there was a correlation between type of employment, education level,

knowledge of the Tuskegee Syphilis Study, or experience with cultural prejudice/racism with

resulting trust levels.

African Americans and Trust 9

Research Questions

Different age groups have different events that define their generation and often have

unique and multidimensional perspectives on life due to their varying experiences. With this in

mind, this research project aimed to answer the following questions: Do different age groups of

African Americans have similar perspectives and opinions about clinical research? Are younger

African American adults more trusting of the clinical research process, given their upbringing in

a less historically negative time period? Do level of education, perceived health status, and type

of employment predict trust levels?

African Americans and Trust 10

Chapter 2: Review of Related Literature

A review of the extant literature pertaining to African American trust and research

reveals that little data intricately examine the age characteristics of African Americans who may

have had negative attitudes or a lack of trust in the clinical research process, unless the study

focused on patients ages 65 and older. A study by Comis, Miller, Aldige, Krebs, and Stoval

(2003) attempted to assess public attitude toward clinical trials and found that younger adults

were more likely to hold positive views about cancer clinical trial participation. This was the only

study reviewed that broke down age groups in 10-year increments and compared attitudes

pertaining to willingness to participate in cancer trials. These data were helpful; however, they

did not go into detail as to why the individuals felt as they did, nor were data presented

comparing race differences.

Other studies offered age breakdowns, but they were specific to diseases, not trust in

clinical research (Lear, 1995; Hoover, Carfiolo & Moench, 2000). One age-specific analysis

protocol did not analyze trust but factors influencing the clinical research participation of

African American college students (Diaz et al., 2008). The study found that young African

Americans preferred an African American investigator over other races. Additionally, a study by

Crandall et al. (2006) presented a breakdown of age effects of lifestyle modification on diabetes

prevention, but race was controlled and there was no survey of attitudes toward research

participation.

Dr. Vanessa Northington Gamble’s extensive work on African American trust in clinical

research has helped to provide a framework for the widespread mistrust of African Americans

toward clinical research. Although an abundance of research points to the Tuskegee experiment

African Americans and Trust 11

as a sole contributor to mistrust, Gamble emphasizes that the origin of mistrust predates public

knowledge about the Tuskegee experiment (Gamble, 1997). She does not ignore Tuskegee’s

influence, however, delving deeper in to the “shadows of Tuskegee” than many other scholars

have gone.

Arch Mainous and colleagues (2006) developed the Trust in Medical Researchers Scale

that specifically assesses participant trust towards clinical research staff. Other authors developed

trust scales, some citing Mainous in preparation, but these scales addressed trust in physicians

specifically, which does not necessarily indicate trust in clinical research or researchers.

Harriet Washington, medical ethicist and journalist, provided the first comprehensive

historical account of medical experimentation on African Americans. In the book, Medical

Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the

Present, Washington made the Tuskegee experiment appear tame with accounts of other medical

monstrosities practiced in the name of research. This publication provided powerful evidence

that the origin of clinical research mistrust for all ages of African Americans can be as

multidimensional and complex as the wrongs committed against this race of people throughout

history.

The most extensive and informative data linking age with trust and participation involve

cancer clinical trials. For example, one study found a high rate of elderly African American

women cancer trial enrollment using a cancer cooperative database to recruit participants

(Hutchins et al., 1999). This study did not, however, gauge trust or attitudes toward

participation. Although effective recruitment strategies for any age group are helpful, addressing

differences in response to African American recruitment by age could be helpful as well. Over

60% of cancer cases in the United States occur in the elderly (≥65) population (Aapro, 2005),

African Americans and Trust 12

and it is important to expand age specific focus to younger groups so that comparisons can be

made regarding what is appropriate practice and what is not.

African Americans and Trust 13

Chapter 3: Research Design and Methodology

The target population in this study consisted of African American adults over the age of

18. However, all races were welcome to participate.

Prior to the distribution of the questionnaire, a Request for Approval of Research

Involving Human Subjects was submitted to the Eastern Michigan University College of Health

and Human Services Human Subjects Review Committee (HSRC) for review and approval. The

study was approved on August 24, 2009 (Appendix A).

A survey was created incorporating questions that would enable a comparison of age to

the level of education, knowledge of the Tuskegee Syphilis Study, experience with cultural

prejudice/racism, and trust. A brief introduction to the survey described the purpose of the this

research project, extent of study involvement, what would happen with the results, insurance of

confidentiality and protection of privacy, explanation of risks, and researcher contact

information should a problem arise. The participants were informed that by completing the

questionnaire, they were giving permission for their answers to be used in analysis of the study,

but they were also informed that their participation was completely voluntary and that they

could stop their participation at any time. Demographic information was then collected

including age, race, hometown, education status, level of education, employment status, and

perceived health. An information section was included to inform those who might have been

unfamiliar with common clinical research terms. The following items were defined: clinical

research/clinical study, clinical trial, informed consent, principal investigator, participant, subject,

and trust. The questions varied in form including short answer questions, multiple choice,

yes/no, Likert scale responses (5=very likely, 4=somewhat likely, 3=neutral, 2=somewhat

African Americans and Trust 14

unlikely, 1=not likely), and Likert scale responses that included a short answer explanation. The

survey is presented in Appendix B.

Embedded in the larger survey was a smaller 12-item survey: the Trust in Medical

Researchers (TMR) Scale (Mainous et al., 2006). This is a previously established instrument to

measure trust specifically in the medical researcher and not in a general construct of medicine as

other models have done (Hall, Zheng, & Dougan et al., 2002). For this study, the questions

were answered on a 5-point Likert scale, thus trust was measured by the total score of the

participant after answering all twelve questions. A higher score represented more trust in the

medical researcher. There were two scores that comprised one trust score. One score pertained

to the participants’ belief that they will be deceived or misled in research (Participant Deception

Score). The other score pertained to the participants’ confidence that researchers are honest

while conducting their research.

The survey was uploaded to the Survey Monkey website (www.surveymonkey.com)

where it was accessible to anyone who could retrieve the link to the survey. The link was posted

to the social media websites Facebook and MySpace. Additionally, various participants obtained

the link from either website and forwarded the link via email to associates and friends who were

not part of an electronic social network or reposted the link on their personal page. The link was

also forwarded via email to a large database of employees of a nationally recognized company.

The completion of the questionnaires was solely online.

The SAS Data System was used to analyze the significance of trust scores in relation to

the secondary variables: age, region of upbringing, education, employment, and perceived health.

African Americans and Trust 15

Various short answer questions from the survey were qualitatively analyzed. The answers were

grouped according to affirmative answers to the following questions: “Have you ever heard of

the Tuskegee Syphilis Study? Does knowledge of this experiment have any influence on your

opinions about clinical research OR whether or not you would participate in a clinical research

study? Have had any experience with cultural prejudice or racism?” Once grouped, the answers

that stood out and were similarly stated by three or more individuals were given a theme. If

answer verbiage was similar across age groups, then the theme was kept consistent across the

groups. Themes that were unique to one group were given distinguishable titles.

African Americans and Trust 16

Chapter 4: Presentation and Analysis of Data

A total of 163 people started the questionnaire. Out of this group, 74% were African

American, 19.6% were white, and 6.25% were of either central/south Asian, American

Indian/Alaskan, or of a mixed racial background. Due to the small sample size of the latter

group, they were all combined into group classified as “Other.” One hundred and sixty-two

respondents completed the demographic portion which included age, race, region of upbringing,

education status, and perceived health. After this section, there were fewer total respondents per

question and the response rate varied by question. In the end, 120 people received a complete

set of trust scores. Therefore, only the answers submitted by these respondents were used in

trust data analysis.

Demographic Information

Age. The youngest participant in the sample was 18 years old and the oldest participant

was 72 years old. Figure 1 represents the comparison of age groups by race. There were no

respondents in the 51-74 age group for the Other section.

African Americans and Trust 17

18-30

31-40

41-50

51-74

Percent

Age Group (Years)

AA %

White %

Other %

Figure 1. Age distribution of study sample by race (African American, n=120; White, n=30;

Other, n=12)

Region of upbringing. Various regions of the country were represented in the study sample.

Eighty-three percent of the respondents were from the Midwest (MI, IL, IN, OH, MO), 5%

were from the South (FL, GA, TN, MS, AB, AR), 5% of respondents answered that they grew

up in various regions of the country, 3.8% were from the Northeast (NY, NJ, PA), 1.3% were

from the East coast (Washington D.C., VA), and 1.9% were from the west coast (CA, NM, AZ).

It is important to note that four respondents indicated that they were not born and raised in the

United States. Due to the differences in culture and traditional clinical research practices of the

United States compared to other countries, these respondents were not included in the trust

analysis but were still included in other qualitative measures.

Education. For the total sample, 34% of respondents had a bachelor’s degree, 33.9% had

a Master’s degree, 9.4% had an associate’s degree, 4.4% had a doctorate degree, and only 1.26%

had no college education at all (See Figure 1). For the purpose of analysis, groups were

combined into the following: high school education, some college, Associates degree; Bachelor

African Americans and Trust 18

and Post-Baccalaureate Degree; Master’s and Doctoral Degree. The breakdown for the sample

as a whole was 25.7%, 35.7%, and 37.5% respectively.

The education level for African Americans varied, with a majority of the group having

obtained a Master’s or a doctoral degree (See Figure 2).

HS, Some College, Assoc

Bachelor's/Post

-Bacc

Master's/Doctorate

Percent

Education Level

White

Other

Figure 2: Education level by race (African American, n=120; White, n=30; Other, n=12)

Figure 3 shows the distribution of education as it pertains specifically to African Americans.

19-30

31-40

41-50

51-74

Percent

Age Group (Years)

High School/Some

College, Associates

Bachelor's/Post-Bacc

Master's/Doctorate

Figure 3. African American education by age (African American, n=120)

Employment. The employment distribution for the entire sample was as follows: 35.2% of

respondents worked in the business field, 26.3% worked in education, 16.7% worked in health

African Americans and Trust 19

care, 12.18 worked in the arts, technology, or trade, and 9.6% were unemployed. Figure 4

presents this data according to race.

Arts

Business

Education

Health Care

Technology

Trade

Unemployed

Percent

Job Description

White

Other

Figure 4. Job Classification by race (African American, n=120; White, n=30; Other, n=12)

Perceived Health. Forty-two percent of the survey population considered themselves to be

in very good health, 32% in good health, 11% in excellent health, and 5% in fair/poor health.

Figure 5 presents this data according to race.

Excellent

Very Good

Good

Poor/Fair

Percent

Health Description

White

Other

Figure 5. Perceived health by race (African American, n=120; White, n=30; Other, n=12)

Survey

As stated previously, after the demographic section of the questionnaire, the response

number per question, especially by non-African American participants, varied slightly. Thus, the

resulting sample of White and other ethnic groups were too small in many cases to analyze

African Americans and Trust 20

properly. Where the numbers were large enough per question, there are detailed results of all

three groups. If only the data from African American participants were analyzed, it is explained

and justified.

Question 1 (survey section) of the questionnaire asks participants to list what comes to

mind when they hear the term “clinical research.” There were very similar responses across all

age groups for the entire sample with the most common terms and phrases cited as: cures, lab

testing, research about diseases/health, research done to enhance health, experiments, and

medical testing. The majority of the entire sample listed these relatively positive, general

statements. A total of 6 participants (total n=162), all African American, simply listed “guinea

pig,” “test rat,” “test dummies,” or “Tuskegee” as their response. This response trend was

meaningful, because overall, the sample had a neutral first thought about what clinical research

meant to them.

However, as detailed in subsequent discussion, other questions gave more opportunity

for the expression of opinion and this neutral response turned less positive, particularly for

African Americans.

Tuskegee and Experience with Racism. Survey questions incorporating knowledge of the

Tuskegee Syphilis Study and racism prompted the participants to share their opinions and beliefs

more so than any other short answer question. Due to the low number of responses from non-

African American participants, only African American responses were analyzed; however,

significant responses by White and Other ethnics groups will be noted.

African Americans and Trust 21

Table 1 consists of the percentage of affirmative responses across the four age groups of

African Americans that seemed to correspond with the trust score pattern that will be discussed

later.

Table 1

Percentage of Respondents Answering “Yes” to Key Survey Questions By Age Group for African Americans

Age Group

18-30 31-40 41-50 51-74

63.6% 57.1% 42.1% 61.1%

59% 39.3% 31% 50%

68.2% 82.1% 94.7% 83.3%

46.7% 60.9% 61.1% 60%

81.8% 89.3% 68.4% 100%

13.6% 7.1% 15.8% 27%

Question

1f: Does your experience with cultural prejudice or racism have

an effect on your willingness to trust health care or clinical

research staff?

1b: Have you ever participated in a research study?

1a: Have you ever been asked

to participate in a research study?

1c: Have you ever heard of the Tuskegee Syphilis Study?

1d: Does knowledge of this experiment have any *influence on

your opinions about clinical research OR whether or not you

would participate in a clinical research study? (*strong to

moderate influence)

1e: Have had any experience with cultural prejudice or racism?

A closer look into respondent answers for questions 1d from Table 1, 1d part B (not

listed in the table) “If so, can you briefly explain why you are influenced?” and question 1e also

in Table 1 revealed many similarities in opinion about clinical research, trust, and racism across

age groups as well as unique differences. It is important to note that among individuals who had

a trust score, experience with cultural prejudice or racism was measured as a significant predictor

of lower trust (p-score=0.0328).

Table 2 compares the significant statements for questions 1d and 1d part B. The

responses from these questions were placed into themes. The first column shows the only theme

that was present in all four age groups, Theme 1: “No drugs, no injections.” In addition, “No

drugs, no injections – Especially no flu shot” present in the older two age groups was listed

under theme 1 due to the similarity of the topic. Theme 2, “The Unknown,” was present in

African Americans and Trust 22

three age groups. The third and fourth column show two different themes that were present in

two age groups: Theme 3, “Another Tuskegee is unlikely, but…” and Theme 4, “The right

versus the wrong group.” Table 3 shows the themes that were unique to each age group.

African Americans and Trust 23

4 Groups 3 groups 2 groups

Age

Theme 1a: No injections, no

drugs

Theme 2: The Unknown

Theme 3: Another Tuskegee

is unlikely, but…

Theme 4: The right versus

the wrong group

"No experiment would be invasive

to my body…"

“[Tuskegee] was run by the

government. Federal funding from

the government funds most studies

these days”

18-30

"I choose not to participate in

medical research. Only social

science"

"It happened once. It can happen

again"

"Although another Tuskegee is

unlikely…you never know how

your info will be used and the

ultimate impact of the results"

" I am not sure if I would ingest

anything"

"[Tuskegee influences me] because

one never knows…"

" If I was given clear assurance

that I would receive the real

sample I may participate"

31-40

"I realize that any data can be

manipulated…I am not a fan of

taking drugs for any research

project…"

"It's hard to get all of the facts" X

"if there was a chance for me to

be in the 'wrong group' on these

studies, I will not participate"

"[Tuskegee] has caused a mis trust

in... trials as well as any 'vaccines'

that the government is pushing for"

" I have wondered about things that

I have done and how they will affect

me long term. To the best of my

knowledge they were safe, but who

knows"

Theme 1b: No injections, no

drugs - Especially no flu

shot

41-50

"[Tuskegee] allows me not to take

flu shots or to be involved in any

type of studies"

"I would never voluntarily expose

myself due to the lack of full

disclosure associated with research"

"Even though these are different

times, I still feel like there is no way

for a person to know what is really

being done to them"

"any research that involved any

drug or injection…I would not

participate in"

"[Tuskegee] makes me cautious

about what anyone says about what

is good for me"

51-74

"I do not receive injections or flu

shots"

"I have no way of being assured that

I would receive truthful

information…pertaining to

research"

"you could be treated with a

placebo for terminal cancer…[I

will not participate] due to this

uncertainty"

"I am mistustful of the H1N1

vaccine"

Table 2

Significant Short Answer Themes for Questions 1d/1d part B from Table 1, by Age Group for African Americans

African Americans and Trust 24

18-30 31-40 41-50 51-74

Theme 5: We're treated

like animals

Theme 7: I'm not a testing

ground

Theme 8: Alterior Motive

Theme 3: AA lives are

viewed as inferior,

worth less

"Tuskegee has little influence

because I am already aware of how

white people view and treat AA

as animals"

"I would never allow anyone to use

my body as a testing ground for an

experimental drug"

"People are generally

selfish…thinking about what

benefits them…I would have trouble

reaching a comfortable trust level"

"the heart of some humans

can't be trusted…blacks are

still considered inferior to

whites that are largely in

charge of research"

"It seems as though AA are used

as guinea pigs"

"it's hard to trust organzations

that fight for the rights of rabbits

to not have mascara tested…but

will stand quietly by when people

are at risk"

"The US government performed

experiments…under the guise of

research…blacks used over whites is

illustrative of the willingness to

subject non-whites to inhumane

treatment"

"the way this experiment was

done makes me

believe..clinical researchers

don't believe AA people have

any value or worth"

Theme 6: AA are given

diseases/not cured on

purpose

Theme 9: God

"...I feel as though African-

Americans are subjected to clinical

research with negative

ramifications. i.e. giving african-

americans diseases and/or using

non-proven cures for pre-existing

diseases"

"If God doesn't lead me…I will not

participate"

Table 3

Unique Short Answer Themes Per Group for Question 1d/1d part B by Age Group for African Americans

Age

The themes in Table 3 were numbered in succession with Table 2. Table 4 groups the

responses to question 1e from Table 1 in a similar manner as Table 2. The themes are lettered

in order to distinguish them from the numbered themes that were in response to question 1d.

As with Tables 2 and 3, it is important to note that the responses found in Table 4 do not

represent the entire set of answers to questions 1e; however, these responses stood out among

the others and were specific examples of personally experienced racism.

African Americans and Trust 25

3 groups 2 groups

Age

Theme A: Work Place

Racism

Theme B: Stereotyped

and more by my doctor

Theme C: The N

word

Theme D: Racial

Profiling

Theme E: Too

much to count

18-30 X

"Nigger was painted on the

lockers of the predominantly

white high school I attended"

"It all boils down to people

thinking you are up to

something just because of the

number of black men in a

single group"

"I was pulled over while

parked in front of my house

because the police officer

didn't believe it was my kind

of neighborhood"

31-40

"I work in corporate America. I

experience [racism] on a daily

basis"

"My husband was given a

vasectomy without my

consent…[my doctor]

stated…more AA men were

likely to undergo the procedure at

that hospital"

"being followed aroud stores

by security like I'm a possible

target for being a shop lifter"

"too many to list";

"Too many to

name"; "too many

and not enough

time"

"discriminated against when it

came to promotions…there was a

trend in the office"

"…doctors assuming I didn't have

a husband or insurance, assuming

I'm on assistance"

"I'm a black man that fits

every description of a wanted

person for questioning"

41-50

"by-passed for promotions";

"always on my job, I'm 1 of 2

blacks"

"I suffered a serious depressive

epidose due to a white doctor

prescribing a beta-blocker without

notifying me of the side effects…a

black physician brought attention

to it…led to my removal of the

medication"

X X X

"…on more than one

occasion I have received

disparaging treatment in the

workplace"

"...stereotypical diagnoses…'you're

pregnant, or have a yeast infection

from tight jeans'…I was not

sexually active and don't own

jeans"

51-74

"everyday at work demonstrates a

lack of diversity in leadership"

"white kids [called my kids]

the n word… they were hurt

because the teacher did

nothing"

"[Racism] is too

broad…we just live

with it...it just is"

"I have been passed over for

positions, ignored in some business

situations…"

"I was at the park and a

young male asked me why I

didn't go to a 'nigger' park"

Table 4

Significant Short Answer Themes for Question 1e from Table 1, by Age Group for African Americans

African Americans and Trust 26

Table 5 represents unique responses for each age group pertaining to whether

participants had experienced cultural prejudice or racism (See Questions 1e, Table 1). The 31-40

year-old age group shared all of its themes with the other three age groups and did not produce a

significantly unique response to question 1e.

18-30 31-40 41-50 51-74

Theme G: Childhood

memories

Theme H: I've seen it happen

to others

Theme I: The South

"I wasn't invited to a birthday party

because I was black"

"I work in education..and have seen

how inner-city schools were treated

unfair compared to white schools"

"I'm black, raised in the South,

you figure it out"

"I attended friend's birthday party

where everyone else was staying over

for the night…but I was informed that I

could not."

"My father called people much younger

than him no sir or no ma'am…this was

done to make a better life for his

children"

"I grew up in the south during

segregation"

Table 5

Unique Short Answer Themes Per Group for Question 1e by Age Group for African Americans

Age

Trust Scores

As noted earlier, only the respondents with a complete set of trust scores were included

in trust score analysis. Overall, African Americans had lower trust scores than the other two

groups. There were cases where the Other group had similar scores; however, the small sample

size of the group (n=11) made it difficult to compare the results to the much larger sample of

African Americans (n=87). As Table 6 shows, African Americans had a significantly lower trust

score regarding participant deception than did their white counterparts.

African Americans and Trust 27

Table 6

Participant Deception Researcher Honesty Total

AA 20.6 24 22.5

White 31 26.2 28.5

Other* 23.6 21.6 22.6

*Small Sample Size

Trust Scores by Race (African American, n=87; White, n=22; Other, n=11)

The differences in trust level among the ethnic groups also varied by age (see Table 7).

Table 7

Race 18-30 31-40 41-50 51-74 18-30 31-40 41-50 51-74

AA 22.2 21.6 17.2 20.8 25.5 26.8 22.0 22.7

White 33.7 29.0 26.0 30*

27.3 29.5 19.6 32*

Other* 25.7 16.0 29.2 n/a 26.9 26 20 n/a

*Small Sample Size

Participant Deception and Researcher Honesty Trust Scores by Race and Age (African American, n=87;

White, n=22; Other, n=11)

Participant Deception

Researcher Honesty

Combining the participant deception and researcher honesty scores gives one composite

trust score. The composite scores also varied significantly by race and age (see Table 8);

however, African Americans still amassed the lowest total trust scores in each age group of all

counterpart groups.

Table 8

Total Composite Trust Score by Race and Age

18-30 31-40 41-50 51-74

AA 23.6 24.7 19.8 21.7

White 30.5 29.3 22.8 31*

Other* 26.3 37* 24.6 n/a

*Small Sample Size

Age

African Americans and Trust 28

Chapter 5: Summary, Conclusions, Inferences, and Recommendations for Further Research and

Action

Not all of the data collected in the questionnaire warranted pertinent information relative

to the initial research questions posed. The demographic information, questions pertaining to

the Tuskegee Syphilis Study, racism, and the trust scores obtained from the study sample proved

to correspond in a manner that not only answered the research questions but provided

supplementary insight into other issues plaguing the African American community regarding

trust and clinical research participation. Additional survey questions pertaining specifically to

trust in clinical research were also helpful in analysis, mainly those probing “what comes to

mind…” or “how likely are you to…”.

Research Questions Addressed

Do different age groups have similar perspectives and opinions about clinical research?

According to Table 1, an average of 44% of African American respondents had ever

participated in a clinical trial, with the highest percentage in the 18-30 year-old age group and the

lowest percentage in the 41-50 year-old age group. Whites had a comparable participation rate at

48% and the Other group had a participation rate of 83%. Research suggests that only 3%-20%

of African Americans participate in clinical trials, so even though they lagged behind their

counterparts, their participation exceeded the average rate.

Question 1d from Table 1 and 1d part B (see questions 7 and 8 in Appendix B) were

initially gauging knowledge of the Tuskegee experiment and the strength of its influence thereof.

Although many African American participants responded accordingly, others used this question

as an opportunity to explain how they felt about clinical research in general. Table 2 lists

African Americans and Trust 29

recurring themes across age groups. “No injections, no drugs” was the most generalizable barrier

to participation for African Americans, and it was knowledge of the Tuskegee study that

prompted thoughts of injections or drugs.

The Tuskegee Syphilis Study, as horrific as it was, actually did not involve the injection

of syphilis or the initiation of the infection. The intent of the study was to monitor the long-term

effects of syphilis on those who already had the disease – which is why the men were not treated

even after penicillin became an acceptable and effective treatment in the early 1940s.

Notwithstanding, of the 31% of African American individuals who were strongly or moderately

influence by Tuskegee, 26% of these people incorrectly noted that the men of the study were

injected with syphilis. Another 55% did not indicate injection but purposeful infection or

exposure of the men to syphilis, which by protocol of the study is still an inaccurate

interpretation. Many also noted that the men were given a drug that didn’t cure them. That

leaves only 18% of the influenced with an accurate account of what actually happened in the

Tuskegee study.

The most common answer given for apprehension towards clinical research participation

based on Tuskegee’s influence (no matter how small or strong) was the distrust of injections

and/or drugs. An inaccurate account of a historical event is currently carrying significant weight

in the minds of those who are aware that the study existed, thus creating a barrier to clinical

research participation in a small group who might otherwise participate in research. Corbie-

Smith et al. (2002) insists that knowledge of negative events through wide dissemination carries

enough weight to adversely affect the ability to overcome distrust. Eighty-one percent of the

African Americans indicating that they were strongly or moderately influenced by Tuskegee had

similar, inaccurate interpretations of the study. It is uncertain whether or not the views of these

African Americans and Trust 30

people would change if they knew that the Tuskegee men were not injected or intentionally

exposed to syphilis. However, the significant weight of these views, accurate or inaccurate, were

nonetheless a barriers to clinical research participation for all ages in this study.

Implied fear of the “unknown” was also an influence of Tuskegee and a common theme.

All age groups expressed this fear with the exception of the 18-30 group. One of the key

statements from the 41-50 age group implied that research does not fully disclose its intentions.

Another statement implies that the full “truth” about research cannot be known, thus it is safer

not to participate. Even white respondents mentioned “hope” that research practices had

changed since Tuskegee. Hope is not certainty. Therefore, fear of what could happen based on

what did happen is driving a lack of participation as well.

Table 3 lists other significant themes present in less frequency with regard to the

Tuskegee experiment. These themes (Theme 3 and 4) are only present in two age groups but still

represent similarities in opinion about not just Tuskegee but clinical research in general. Theme

3 represents both optimism and skepticism for the 18-30 and 41-50-year-old age groups.

“Another Tuskegee is unlikely, but…” takes into account that some African American

participants believe that another study similar in practice to Tuskegee is unlikely in current times.

However, even with that belief, many expressed doubts about other areas pertaining to research.

The youngest participant in the study sample (18 years old) noted the connection

between government allowance of Tuskegee and the notion that many research studies today are

funded by the government to strengthen their point that research is not safe simply because of

government rules. In response to question 1d (Table 1) that same participant stated, “[Tuskegee]

was run by the government. Federal funding from the government funds most studies these

African Americans and Trust 31

days,” almost as if to say that the government provides no protection. Additionally, the entire

study sample, not just African Americans, indicated that out of sample institutions that could

conduct a study, mainly colleges and universities (see Question 11 in Appendix B), they were the

least trusting of the government. White participants even indicated that they would be more

trusting of a study run by a Historically Black College or University (HBCU) than a government-

run study.

Theme 4, “The right versus the wrong group,” was present in the remaining age groups.

Two of the three participants quoted under Theme 4 (Table 2) had participated in clinical

research. One participated in a diabetes study and the other participated in a clinical device

study. Even though they had participated in research before, their comments indicated that they

were skeptical of research that had more than one group for participants to be placed.

Unfortunately, many clinical trials are set up with more than one group (commonly called arms).

Randomized trials produce objective results because the researchers are not placing participants

into the study arms. They are randomized into them and most studies of this type have at least

two arms. The number of arms and the treatment thereof depends on the type of study, but the

objectivity of the data depends on the randomization procedures (U.S. National Library of

Medicine: ClinicalTrials.gov).

The participant who had not participated in research described a study that she was

asked to participate in. She stated, “Two groups were randomly selected: one group to walk and

use a pedometer and the other group to continue as normal (no walk, no exercise). The group

on the walking program would benefit physically but the other group would not even though it

is a proven fact that exercise is good for you. So instead of being encouraged to walk, you are

almost encouraged not to for the benefit if the study.” She later went on to say, “If there was a

African Americans and Trust 32

chance for me to be in the ‘wrong group’ on these studies, I will not participate.” In her first

comment, she clearly articulated the random selection of the two groups, yet expressed her

displeasure with the fact that one group would not get the same benefits as the other group.

Therefore, since she believed that exercise was proven to be beneficial, she did not participate

because she was not guaranteed enrollment into the pedometer group. A pattern emerged when

combining her explanation of her experience with her knowledge of the Tuskegee Study. She

indicated that Tuskegee’s “goal was to determine if patients were better off not being treated.”

She chose not to participate in a study where she thought that she could be in the group that was

not being “treated” with exercise even after her acknowledgement of the randomization process.

Many research studies rely on the comparison of data across different groups, and

sometimes the randomization process is unavoidable. Notwithstanding, Theme 4 demonstrates

that there could be trust issues surrounding a fundamental component of some research studies,

due to historical recollection that one group will not receive the same benefits as the other(s).

Table 3 lists the themes that were unique to each age group with regard to Tuskegee’s

influence. The 18-30 age group believed that African Americans are treated and viewed as

animals and are intentionally given or not cured from diseases (Themes 5 and 6). Similarly, the

51-74 age group expressed views of African American lives as inferior to whites or less valued.

Gamble (1997) explains that when African Americans feel devalued by whites, their relationships

with medical professionals are influenced and mistrust is fueled. This belief’s shared influence on

both the youngest and eldest age group suggests that these thoughts are impartial to the age of

the individual.

African Americans and Trust 33

The 31-40-year-old age group expressed their disdain for being used as testing objects

because of potential risk. The 41-50 age group was the most candid in expressing outright

distrust for the clinical research process, citing the selfishness of people and the “guise” of

research as reasons to rightfully be negatively influenced in terms of clinical research opinion. As

will be discussed later, the latter age group was also compositely the less trusting age group.

Table 4 lists select participant experiences with racism. As previously stated, racism was a

statically significant predictor of a lack of trust in clinical research (p-score= 0.038). However,

even though the 41-50 age group was the least trusting by total trust score, they had the least

experience with racism of all groups. One would have expected the 51-74 age group (100%

experience with racism, n=36) to have been the least trusting overall based on experience with

racism alone, but a lack of trust can originate from several factors. The 41-50 age group had the

lowest participation rate (31%) in clinical research when compared to the 18-30, 31-40, and 51-

74 age groups (59%, 39.3%, and 50%, respectively). Over 94% of the 41-50 age group had heard

of the Tuskegee study and had the highest percentage of strong to moderate influence due to

this knowledge (29%, n=38). The level of education has also been cited to correlate negatively

with a lack of trust (Hall, Camacho, Lawlor, DePut, Sugarman, & Weinfurt, 2006). The 41-50

age group had the most participants whose highest level of education was high school, some

college, or an associate’s degree. Additionally, this group had the lowest percentage of

participants reaching a Master’s or doctoral level of education of all African American age

groups (See Figure 3) . All of these factors could explain the lower trust score despite the lesser

experience with racism.

One of the most significant themes as it relates to the clinical setting is Theme B,

“Stereotyped and more by my doctor.” This theme was represented in the 31-40 and 41-50 year-

African Americans and Trust 34

old age groups. Negative views of hospital staff have been found to be a barrier to trust. African

Americans have been found to be less trusting of their physicians and to be more passive in

encounters (Franks, Muennig, Lubetkin & Jia, 2006; Bird & Bogart, 2001). A telephone survey

revealed that African Americans were more likely than Whites to report that their doctors did

not inquire sufficiently about their pain, did not give a time frame for their medication to work,

and did not explain the seriousness of injury or illness (Blendon, 1989; Gamble, 1997).

Additionally, physicians have been found to perceive and treat African American patients

differently than their white counterparts (Franks et al., 2006). The cringe-inducing accounts of

the experiences in this current research study are evidence of not only stereotypes in health care,

but potential seeds of mistrust. One participant described her experience with what she thought

was a stereotypical diagnosis by her doctor. She stated, “I have had several occurrences where I

would mention certain symptoms that I am experiencing…and the physician would make a

stereotypical diagnosis/guess of my condition without performing an examination…until I insist

that they examine me before trying to guess.” She went on to state that she was told she was

pregnant or had a yeast infection from tight jeans when she was not sexually active and did not

own a pair of jeans.

Just like the perpetuation of stereotypes in other areas of our lives can be harmful to

those around us, so too can it be in health care and clinical research. Surprisingly, none of these

participants indicated that they would not participate in clinical research indefinitely. Instead,

they all stated that careful understanding of potential research studies, personal assumption of

responsibility for knowing what the study entails, and careful background research of the study

in question were necessary prior to participation. These individuals, whose stories were

highlighted in Theme B (Table 4), represent a group of African Americans who are cautious of

African Americans and Trust 35

research due to a negative medical experience but have not yet excluded clinical research

participation all together.

Table 5 listed unique experiences by age group, and the themes for three of the four

groups were somewhat indicative of the age of the individuals. Keeping in mind that racism was

a statistically significant predictor of trust in clinical research, the 18-30-year-old age group often

referenced distant childhood memories in their experiences with racism which could be

indicative of why this group was less influenced and participated more in clinical research than

any other age group. The 41-50 and 51-74 age group, which have the lowest two participation

rates and trust scores of all groups, referenced more recent and frequent encounters with racism

at their place of work. The recall of more recent memories or situations (e.g. going to the same

job every day where they were passed up for a promotion, working every day with the same

colleagues who make racist remarks) could explain why the older age groups were less trusting of

and participated in research less than the 18-30 age group.

Are younger African American adults more trusting of and more willing to participate in the clinical

research process given their upbringing in a less historically negative time period?

While little explicit data were available to answer this question, a few implicit details

emerged through the short answer responses of the participants. Younger African American

adults in the 18-30-year-old age group did participate in clinical research at a higher rate than the

31-40, 41-50, and 51-74 age groups (59% had participated in clinical research compared to

39.3%, 31%, and 50%, respectively). Across all age groups, this was an extremely high rate of

participation. Newman et al. (2006) found that due to the difficulty in obtaining adequate

minority samples, researchers tend to settle for general population demographics when

conducting their studies. African Americans represent approximately only 13% of the United

African Americans and Trust 36

States population (McKinnon, 2003), thus, the participation rates of the individuals in this study

would be expected to hover around this percentage. The doubling and a tripling of this

percentage could be attributed to the general geographic location of residence for the study

sample. Over 70% of the respondents indicated that they were either born or raised in Southeast

Michigan, which is home to over 5 major public institutions of higher education, two of which

are world leaders in clinical research (Universities Research Association, Inc.). The proximity of

the universities could provide increased access to research studies for this group of African

Americans.

The 18-30-year-old age group and the 31-40-year-old age group both had higher

composite trust scores than the corresponding older age groups, suggesting more trust in clinical

researchers. The 18-30 age group had a participant deception score of 22.6, a researcher honesty

score of 25.5, and a composite score of 23.6. These were the highest scores for all four age

groups, meaning that the youngest age group was the most trusting of clinical researchers. The

31-40 age group was in the same area, with a participant deception score of 21.6, a researcher

honesty score of 26.8, and a composite score of 24.7. The closest score to the two younger

groups was the participant deception score of the 51-74-year-old age group, which was 20.8. The

remaining scores for the older two groups were at least 2.8 points lower than the younger group.

The 41-50 age group averaged a participant deception score of 17.3, which was the lowest of all

trust scores for any age or race. This group frequently cited a lack of full disclosure and

“withhold[ing] of the truth” as a barrier to participation, so it was expected that this group

would unanimously believe that researchers attempt to deceive participants in some way.

African Americans and Trust 37

Do level of education, perceived health status, and type of employment predict trust levels?

Although research suggests that education can be a predictor of low clinical research

participation and trust (Hall et al., 2006), this study did not find a significant correlation between

education and trust. In addition, this study did not find a correlation between perceived health

and trust either.

The African American study sample was more educated than not only the average

African American, but the average White American as well. Over 60% of the entire African

American sample held at least a bachelor’s degree, with 37% having obtained a master’s or

doctoral degree. According to a Unites States Census Bureau report in 2004, only 17% and 29%

of African Americans and Whites, respectively, had obtained at least a bachelor’s degree. This is

an unusual sample by most standards and could be attributed to the general sampling area

(Southeast Michigan is home to over 5 major universities) and the manner in which the sample

was obtained (all respondents answered the questionnaire online via computer and internet

access).

Conclusions and Recommendations

Given the information obtained in this research project, it is reasonable to conclude that

different age groups of African Americans are apprehensive about participation and less trusting

of clinical research for different reasons.

This study shows that even highly educated and employed African Americans can be

distrustful of the clinical research process, contrary to other studies that indicated a lack of

education and low socioeconomic status are barriers to clinical research trust and participation

(Fouad et al., 2000; Shavers et al., 2002). The African American study sample surpassed not only

African Americans and Trust 38

the national average for Blacks receiving at least a bachelor’s degree, but for Whites as well. This

study showed that a lack of trust correlated significantly with experience with racism. Other

studies have reported that institutional racism can be a barrier, but few studies have specifically

analyzed experiences with racism with regard to age. The ability to link one or multiple

experiences with trust or lack thereof is an important step in determining how to move beyond

racism as a barrier to African American participation.

Additionally, there is a lot of research that debates the significance of knowledge of the

Tuskegee Syphilis Study on African American participation in research. There is research that

suggests that it shaped a generation of thoughts toward clinical research (Gamble, 1993;

Fairchild & Bayer, 1999). Evidence from this study supports this theory, mainly by the low trust

scores and high knowledge rates of the Tuskegee experiment in the 41-50 and 51-74 age groups.

However, there is also research that suggests that African Americans are willing to participate in

clinical research and actually have favorable views towards it (Gifford et al., 2002). Evidence

from this study supports this theory as well with the high participation percentage of African

Americans when compared to their representation in the United States. The latter theory is also

supported by the expression of “advice” that many participants gave regarding the pursuit of

knowledge about a study before participation can begin, implying that participation was possible

with and only with full knowledge of the study protocol.

To successfully reach out to African Americans, researchers must take into account the

various reasons behind their mistrust. Focus groups that include research staff and African

American adults of various ages could provide an opportunity for both parties to gain a better

understanding of the other’s perspective on research. These focus groups should center on

investigator attitudes toward minority recruitment and reasons behind participant mistrust.

African Americans and Trust 39

There were some limitations of this study. First, the questionnaire was only available

online. This could have prohibited some from completing the questionnaire due to a lack of

access to the internet. Second, the questionnaire link was primarily distributed on Facebook and

MySpace. Many people do not have a Facebook or MySpace account, which limited the initial

response to a select number of individuals. While it is not certain how many people responded

via social networking sites or who responded via the emails forwarded to a company list-serve,

the limited access of the survey created a barrier to participation. Last, additional demographic

information such as gender and the institution of high education would have all been helpful in

defining the characteristics of the study sample.

The study’s strengths were its qualitative approach to attitudes about clinical research

based on age. The resulting themes of the open-ended questions provide additional information

to the literature as to what could be perpetuating mistrust of clinical research for African

Americans. The division of age groups provided unique information pertaining to their thoughts

and apprehensions about clinical research. The use of Trust in Medical Researchers scale enabled

analysis of trust specifically in the medical researcher and not in general health care or primary

care providers. This specificity strengthens the trust score’s relevance to the research questions

posed.

Evidence presented in this study also adds to the current literature by further exploring

specific trust level differences in African Americans. Age specific barriers to trust could have

future implications for trust-building and effective clinical research recruitment for specific age

groups. Future outreach efforts should attempt to gauge the age-specific apprehension of

African Americans in order to tailor appropriate recruitment and retention strategies towards

them.

African Americans and Trust 40

Last, as evident in Theme B from Table 4, principal investigators and their staff

members must be trained in cultural sensitivity and cultural competency to help prevent

irrational assumptions and stereotypes from impacting their outreach efforts to the African

American population. Newman et al. (2006) report that many investigators are reporting

deficiencies in developing culturally competent protocols. As difficult as it can be to recruit

African Americans, the effort must be made to develop culturally competent protocols that will

enable better recruitment and retention. This is particularly important in addressing younger

people who have higher participation rates currently and, with effective outreach, can change the

future enrollment statistics of African Americans. Additionally, the willingness of respondents

in this study to participate in clinical research even after a culturally insensitive experience

reflects the capacity of some African Americans to fully educate and inform themselves about

their personal pursuit of research. Increased education for researchers in this area can facilitate

the outreach to those who are not as willing to participate.

The results of this study provide a unique perspective on age-based trust that targets all

adult ages, not just the elderly. Given that ethnic diversity in clinical research is critical, the

results of this study provide important insights that could ensure that African Americans will feel

more comfortable about clinical research participation. These insights include the importance of

mending of broken trust for African Americans, the maintenance of trust that does exist, and

the effort to specifically address their age-related issues in clinical research.

African Americans and Trust 41

References

Aapro, M. S., Kohne, C. H., Cohen, H. J., & Extermann, M. (2005). Never too old? Age

should not be a barrier to enrollment in cancer clinical trials. The Oncologist, 10, 198-

204.

Adams-Campbell, L. L., Ahaghotu, C., Gaskins, M., Dawkins F. W., Smoot, D., Polk,

O.D., et al. (2004). Enrollment of African Americans Onto Clinical Treatment

Trials: Study Design Barriers. Journal of Clinical Oncology, 22, 730-734.

Advani, A. S., Atkeson, B., Brown, C. L., Peterson, B. L., Fish, L., Johnson, J. L., et al. (2003).

Barriers to the participation of African American patients with cancer in clinical

trials. Cancer, 97, 1499-1506.

Armstrong, T. D., Crum, L. D., Rieger, R. H., Bennet , T. A., & Edwards, L.J. (1999).

Attitudes of African Americans toward participation in medical research. Journal of

Applied Social Psychology, 29(3), 552-574.

Bates, B. R., & Harris, T. M. (2004). The Tuskegee study of untreated syphilis and public

perceptions of biomedical research: A focus group study. Journal of the National

Medical Association, 96(8), 1051-1064.

Bird, S. T. & Bogart, L. M. (2001) Perceived race-based and socioeconomic status (SES)-

based discrimination in interactions with health care providers. Ethnicity and Disease,

11(3), 554-563.

Blakely, R. L. & Harrington, J. M. (1997). Bones in the Basement: Postmortem Racism in the

Nineteenth-Century Medical Training. Washington, D.C., and London: Smithsonian

Institution Press.

Blendon, R. J. (1989). Access to medical care for black and white Americans; A matter of

African Americans and Trust 42

continuing concern. Journal of the American Medical Association, 261, 278-281.

Brandon, D. T., Isaac, L. A., & LaVeist, T. A. (2005). The legacy of Tuskegee and trust in

medical care: Is Tuskegee responsible for race differences in mistrust of medical

care? Journal of the National Medical Association, 97(7), 951-956.

Carter, J. S., Pugh, J. A., & Monterrosa, A. (1996). Non-insulin-dependent diabetes mellitus

in minorities in the United States. Annals of Internal Medicine, 125(3), 221-232.

Comis, R. L., Miller, J. D., Aldige’, C. R., Krebs, L., & Stoval, E. (2003). Public attitudes

toward participation in cancer clinical trials. Journal of Clinical Oncology, 21(5), 830-835.

Corbie-Smith, G., Thomas, S. B., Williams, M. V., & Moody-Ayers, S. (1999). Attitudes

and Beliefs of African Americans Toward Participation in Medical Research. Journal

of General Internal Medicine, 14, 537-546.

Corbie-Smith, G., Thomas, S. B., St. & George, D. M. (2002). Distrust, race, and

research. Archives of Internal Medicine, 162, 2458-2463.

Crandall, J., Schade, D., Ma, Y., Fujimoto, W. Y., Barrett-Connor, S. F., Dagogo-Jack, S., et

al. (2006) The influence of the effects of lifestyle on modification and metformin in

prevention of diabetes. Journals of Gerontology Series A: Biological and Medical Sciences,

61(10), 1075-1081.

Dennis, B. P. & Neese, J. B. (2000). Recruitment and retention of African American elders

into community-based research: Lessons learned. Archives of Psychiatric Nursing, 14(1),

3-11.

Diaz, V. A., Mainous, A. G., McCall, A. A., & Geesey, M. E. (2008). Factors affecting

research participation in African American college students. Family Medicine, 40, 46-

51.

African Americans and Trust 43

Doescher, M. P., Saver, B. G., Franks, P. & Fiscella, K. (2000). Racial and ethnic disparities

in perceptions of physician style and trust. Archives of Family Medicine, 9(10), 1156-

1163.

Doherety, T. M., Tang, W., & Detrano, R. C. (1999). Racial differences in the significance

of coronary calcium in asymptomatic black and white subjects with coronary risk

factors. Journal of the American College of Cardiology, 34(3), 787-794.

Emanuel, E. J., Wendler, D., & Grady, C. (2000). What makes clinical research ethical? The

Journal of the American Medical Association, 283, 2701-2711.

Evelyn, B., Toigo, T., Banks, D., Pohl, D., Gray, K., Robins, B. et al. (2001) Participation

of racial/ethnic groups in clinical trials and race-related labeling: A review of the new

molecular entities approved 1995-1999. Journal of the National Medical Association,

93(12), 18S-24S.

Fairchild, A. L. & Bayer, R. (1999). Uses and abuses of Tuskegee. Science, 284, 919-921.

Fouad, M. N., Partridge, E., Green, L., Kohler, C., Wynn, T., Nagy, S., et al. (2000).

Minority recruitment in clinical trials: A conference at Tuskegee, researchers and the

community. Annals of Epidemiology, 10, S35-S40.

Franks, P., Muennig, P., Lubetkin, E., & Jia, H. (2006). The burden of disease associated

with being African-American in the United States and the contribution of socio-

economic status. Social Science and Medicine, 62, 2469-2478.

Freedman, B. I., Tuttle, A. B., & Spray, B. J. (1995). Familial predisposition to nephropathy

in African Americans with non-insulin dependent diabetes mellitus. American Journal

of Kidney Diseases, 25(5), 710-713.

Freedman, B. I., Soucie, J. M., & McClellan, W. M. (1997). Family history of end-stage renal

African Americans and Trust 44

disease among incident dialysis patients. Journal of the American Society of

Nephrology, 8, 1942-1945.

Fregene, A., & Newman, L. A. (2005) Breast cancer in Sub-Saharan Africa: How does it

relate to breast cancer in African American women?. Cancer, 103, 1540-1550.

Freimuth, V. S., Quinn, S. C., Thomas, S. B., Cole, G., Zook, E., & Duncan, T. (2001)

African American views on research and the Tuskegee Syphilis Study. Social Science

and Medicine, 52, 797-808.

Gamble, V. N. (1993). A legacy of distrust: African Americans and medical research.

American Journal of Preventative Medicine, 9, 35-38.

Gamble, V. N. (1997). Under the shadow of Tuskegee: African Americans and health care.

American Journal of Public Health, 87, 1773-78.

Gifford, A. L., Cunningham, W. E., Heslin, K. C., Andersen, R. M, Nakazono, T., Lieu,

D. K., et al. (2002). Participation in research and access to experimental treatments

by HIV-infected patients. New England Journal of Medicine, 346, 1373-1382.

Hall, M. A., Camacho, F. Lawlor, J. S. DePuy, V, Sugarman, J., & Weinfurt, K. (2006).

Measuring trust in medical researchers. Medical Care, 44(11), 1048-1053.

Hall, M. A., Zheng, B., & Dugan, E., Camacho, F., Kidd, K. E., Mishra, A., et al. (2002).

Measuring patients’ trust in their primary care providers. Medical Care Research and

Review, 59(3), 293-318.

Harris, Y., Gorelick, P. B., Samuels, P., & Bempong, I. (1996). Why African Americans

may not be participating in clinical trials. Journal of the National Medical Association, 88,

630-634.

Hoover, D. R., Carfioli, B., & Moench, E. A. (2000). Attitudes of adolescent/young adult

African Americans and Trust 45

women toward human papillomavirus vaccination and clinical trials. Health Care for

Women International, 21, 375-391.

Hutchins, L. F., Unger, J. M., Crowley, J. J., Coltman, C. A., & Albain, K. S. (1999).

Underrepresentation of patients 65 years of age or older in cancer-treatment trials.

The New England Journal of Medicine, 341(27), 2061-2067.

Ijaduola, T. G. & Smith, E. B. (1998) Pattern of breast cancer among white-American,

African-American, and nonimmigrant west-African women. Journal of the National

Medical Association, 90, 547-551.

Javitt, G. (2010). Why not take all of me? Reflections on The Immortal Life of Henrietta

Lacks and the status of participants in research using human specimens. Minnesota

Journal of Law, Science & Technology, 11(2), 713-755.

Jones, G. R. & George, J. M. (1998). The experience and the evolution of trust:

Implications for cooperation and teamwork. Academy of Management Review. 23(3),

531-546.

Jones, H. W., McKusick, V. A., Harper, P. S., & Wuu, K. D. (1971). After office hours: The

HeLa Cell and a reappraisal of its origin. Obstetrics and Gynecology, 38(6), 945-949.

Kizer, J. R., Arnett, D. K., Bella, J. N., Paranicus, M., Rao, D. C., Province, M. A., et al.

(2004). Differences in left ventricular structure between black and white

hypertensive adults: The Hypertension Genetic Epidemiology Network study.

Hypertension, 43, 1182-1188.

Lear, D. (1995). Sexual communication in the age of AIDS: The construction of risk and

trust among young adults. Social Science and Medicine, 41(9), 1311-1323.

Mainous, A. G., Smith, D. W., Geesey, M. E., & Tilley, B. C. (2006). Development of a

African Americans and Trust 46

measure to assess patient trust in medical researchers. Annals of Family Medicine,

4(3), 247-252.

McKinnon, J. (2003). The Black Population in the United States: March 2002. U.S. Census.

Meinert, C. L. (1986). Clinical Trials: Design, Conduct, and Analysis. New York: Oxford

University Press.

Mouton, C. P., Harris, S., Rovi, S., Solorzano, P., & Johnson, M. S. (1997) Barriers to black

women’s participation in cancer clinical trials. Journal of the National Medical Association,

89, 721-727.

National Institutes of Health. Recruitment of underrepresented minorities into

institutional/national research service award programs. NIH Guide 1993; 22(25).

National Institutes of Health (2001). Amendment: NIH policy and guidelines on the

inclusion of women and minorities as subjects in clinical. Retrieved August 10,

2010, from

http://grants.nih.gov/grants/funding/women_min/guidelines_amended_10_2001.htm.

Newman, L. A., Lee, C. T., Parekh, L. P., Stewart, A. K., Thomas, C. R., Beltran, R. A. et al.

(2006). Use of the National Cancer Data Base to develop clinical trial accrual targets

that are appropriate for minority ethnicity patients. Cancer, 106, 188-195.

NIH Guidelines on Inclusion of Women and Minorities as Subjects in Clinical Research,

NIH Guide. (1994), 23(11). Retrieved August 10, 2010, from

http://grants.nih.gov/grants/guide/notice-files/not94-100.html

Perneger, T. V., Brancati, F. L., Whelton ,P. K., & Kiag, M. (1994). End-stage renal disease

attributable to diabetes mellitus. Annals of Internal Medicine, 121, 912-918.

US Census Bureau Report on Educational Attainment in the United States: 2003. Issued

African Americans and Trust 47

June 2004, United States Census Bureau.

Savitt, T. L. (1978) Medicine and Slavery: The Diseases and Health Care of Blacks in

Antebellum Virginia. Urbana: University of Illinois Press; reprint 2002.

Shavers, V. L., Lynch, C. F., & Burmeister, L. F. (2002). Racial differences in factors that

influence the willingness to participate in medical research studies. Annals of

Epidemiology, 12, 248-256.

Shavers-Hornaday, V. L., Lynch, C. F., Burmeister, L. F., & Torner, J. C. (1997). Why are

African Americans under-represented in medical research studies? Impediments to

participation. Ethnicity and Health, 2, 31-45.

Swanson, G. M. & Ward, A. J. (1995). Special Article “Recruiting minorities into clinical

trials: Toward a participant friendly system. Journal of the National Cancer Institute, 87,

1747-1759.

United States National Library of Medicine. ClinicalTrials.gov. Retrieved August 15,

2010, from http://clinicaltrials.gov/ct2/info/glossary#randomt.

Universities Research Association, Inc. URA Universities. Retrieved August 15, 2010,

from http://www.ura-hq.org/universities/index.html.

Washington, H. (2006). Medical Apartheid: The Dark History of Medical Experimentation on

Black Americans from Colonial Times to the Present. New York: Doubleday Broadway

Publishing Group.

African Americans and Trust 48

APPENDIX A: Permission Letter

Study title:

African Americans and Trust: Examining Clinical Research Trust Levels Based On Age

The purpose of this research project is to learn whether or not different age groups are or are not

trusting of the clinical research process for different reasons based upon their age. Although

African Americans are the target population, all racial and ethnic groups are welcomed and encouraged

to participate in the study. You must be at least 18 years old to participate.

The study involves the completion of a brief survey that will take you approximately 15 -30 minutes to

finish. You will be asked a series of questions about your personal feelings and experiences with regard

to clinical research. This is not a test and there are no right or wrong answers.

The results of this study could be used in a research publication that will be accessible to the public.

Your right to confidentiality is of great importance; therefore this study does not require that you give

your name or other personal information. With your permission, responses to the open ended questions

could be used as data, however, you will not be identified in any way. The data collected is only for use

of the investigator for research purposes. Your privacy will be protected at all times.

Since no names or contact information are requested in this study, there will be a space at the end of

the survey for you to provide your email address should you wish to be informed of the study results.

This information will be kept securely in a password protected database and will only be used to

distribute results of the study.

There are no risks associated with participating in this study. However, there is the possibility that as

you respond to the questions you may feel some distress through identifying personal experiences. If

you feel any discomfort, you have the right to stop at any time. If such distress is felt after the survey

has been completed, you may contact Dr. Deb deLaski -Smith, Administrative Co-Chair of the Eastern

Michigan University Human Subjects Review Committee (contact info below).

Taking part in this study is completely voluntary. You do not have to participate if you do not want to.

You may stop your completion of the questionnaire at any time. If you stop taking the survey before it is

finished, there will be no penalty to you.

If you have any additional questions or concerns, please contact the researchers listed below to:

• Obtain more information about the study

• Ask a question about the study procedures

• Express a concern about the study

Stephen Sonstein, PhD

Email address: sonsteinff@comcast.net

This research protocol and informed consent document has been reviewed and approved by the Eastern

Michigan University Human Subjects Review Committee for use from to . If you have any questions about

the approval process, please contact Dr. Deb de Laski -Smith (734.487.0042, Interim Dean of Graduate

School and Administrative Co-chair of UHSRC, human.subjects@emich.edu).

By completing the questionnaire, you will give the researcher your permission to obtain, use, and share

information that you provide for this study. This permission is required in order for you to take part in the

study.

1. Consent to Participate

African Americans and Trust 49

APPENDIX B

Please enter the following demographic information.

To protect your privacy, all of your responses to this questionnaire will remain anonymous.

1. Age

2. Ethnicity

3. Race

4. Are you currently enrolled in college?

2. Demographic Information

Age

Where were you born?

Where were you

primarily raised?

Hispanic or Latino

gfedc

Non-Hispanic or Latino

gfedc

American Indian/Alaskan Native

gfedc

African American/Black

gfedc

Caucasian/White

gfedc

Central or South Asian

gfedc

Middle Eastern/Arab American

gfedc

Native Hawaiian/Pacific Islander

gfedc

Other (please specify)

Yes

nmlkj

5. What is the highest level of education you completed?

6. Did you attend a Historically Black College or University?

7. What type of job do you have?

8. In general, how would you describe your health?

Elementary School

nmlkj

Middle School

nmlkj

High School/GED

nmlkj

Some College

nmlkj

Associates Degree

nmlkj

Bachelors Degree

nmlkj

Post Baccalaureate Degree

nmlkj

Master's Degree

nmlkj

Doctoral Degree

nmlkj

Yes

gfedc

Arts

gfedc

Business

gfedc

Education

gfedc

Health Care

gfedc

Technology

gfedc

Trade

gfedc

Unemployed

gfedc

Excellent

nmlkj

Very Good

nmlkj

Good

nmlkj

Fair

nmlkj

Poor

nmlkj

These questions will allow the researcher to gain a better understanding about your attitude towards

clinical research and why you feel the way that you do.

There are a few important terms that the researcher would like you to be familiar with before you begin

the survey:

Clinical Research - Also known as medical research which requires the collaboration of a number of

persons, perhaps not all of them doctors.

Clinical studies (or clinical research) - medical research studies in which people participate as volunteers.

Clinical research studies (sometimes called trials or protocols) are a means of developing new treatments

and medications for diseases and conditions. There are strict rules for clinical trials, which are monitored

by the National Institutes of Health and the U.S. Food and Drug Administration.

Clinical trial

- a scientific study of how a new medicine or treatment works in people. Through clinical

studies, doctors find new and better ways to prevent, detect, diagnose, control, and treat illnesses.

Testing in humans is permitted only if that person volunteers for participation and understands the risks

and benefits of taking part in a study. This informed consent to participate must be based on the

volunteer's understanding of what is involved in the study, including potential risks and benefits.

Principal investigator (study doctore) - In biomedical research, the person who directs a research

project or program. The principal investigator (also known as the PI) usually writes and submits the

grant application, oversees the scientific and technical aspects of the grant, and has responsibility for

the management of the research.

Participant - One that participates, shares, or takes part in something.

Subject - The object of observation, treatment, or research.

Trust - assured reliance on the character, ability, strength, or truth of someone or something; one in

which confidence is placed.

1. In your own words, please explain what comes to mind when you hear

the term "clinical research".

2. If you were to participate in a clinical research study, would you prefer to

be referred to as a:

3. Have you ever been asked to participate in a research study?

3. Survey

Participant

nmlkj

Subject

nmlkj

Doesn't matter

nmlkj

Yes

nmlkj

4. Have you ever participated in a research study?

5. If so, what kind of study? Please check all that apply.

6. Have you ever heard of the Tuskegee Syphilis Experiment?

nmlkj

Yes

nmlkj

Drug clinical trial or research study

gfedc

Device clinical trial or research study (example of a device pacemaker or podometer)

gfedc

Heart/Hypertension study

gfedc

Arthritis study

gfedc

Diabetes

gfedc

HIV/AIDS study

gfedc

Cancer study

gfedc

Psychology study

gfedc

Sleep study

gfedc

Depression study

gfedc

Other (please specify)

nmlkj

Yes

nmlkj

If yes, please describe what you know about this study.

7. Does knowledge of this experiment have an influence on your opinions

about clinical research?

8. Does knowledge of this experiment have any influence on whether or not

you would participate in a clinical research study?

Strong

Influence

Moderate

Influence

Neutral

Little Influence

No Influence

No Knowledge

Strength of Influence

nmlkj nmlkj nmlkj nmlkj nmlkj nmlkj

Strong

Influence

Moderate

Influence

Neutral

Little Influence

No Influence

No knowledge

Strength of influence

nmlkj nmlkj nmlkj nmlkj nmlkj nmlkj

If so, could you briefly explain why you are influenced?

9. How likely is it that you would trust a clinical study doctor and staff if they

were primarily

10. How likely is it that you would participate in a clinical study if:

11. How likely is it that you would participate in a clinical reserach study if

the study was sponsored by:

Very Likely

Somewhat Likely

Neutral

Less Likely

Not Likely

Caucasian/White?

nmlkj nmlkj nmlkj nmlkj nmlkj

Black/African

American?

nmlkj nmlkj nmlkj nmlkj nmlkj

Asian?

nmlkj nmlkj nmlkj nmlkj nmlkj

Hispanic/Latino?

nmlkj nmlkj nmlkj nmlkj nmlkj

Middle Eastern or Arab

American

nmlkj nmlkj nmlkj nmlkj nmlkj

Other?

nmlkj nmlkj nmlkj nmlkj nmlkj

A mixture of races?

nmlkj nmlkj nmlkj nmlkj nmlkj

Men?

nmlkj nmlkj nmlkj nmlkj nmlkj

Women?

nmlkj nmlkj nmlkj nmlkj nmlkj

Very Likely

Somewhat Likely

Neutral

Less Likely

Not Likely

You knew the doctor or

clinical study staff

member

nmlkj nmlkj nmlkj nmlkj nmlkj

You were told about

the study by a friend

nmlkj nmlkj nmlkj nmlkj nmlkj

Very Likely

Somewhat Likely

Neutral

Less Likely

Not Likely

A large, well-known

univeristy or college?

nmlkj nmlkj nmlkj nmlkj nmlkj

A small, less-know

univeristy or college?

nmlkj nmlkj nmlkj nmlkj nmlkj

A predominantly white

university or college?

nmlkj nmlkj nmlkj nmlkj nmlkj

A historically black

university or college?

nmlkj nmlkj nmlkj nmlkj nmlkj

The government?

nmlkj nmlkj nmlkj nmlkj nmlkj

Other institution?

nmlkj nmlkj nmlkj nmlkj nmlkj

12. Have you had any experience with cultural prejudice or racism?

13. Does your experience with cultural prejudice or racism have an effect

on your willingness to trust health care or clinical research staff?

nmlkj

Yes

nmlkj

If so, can you provide a brief explanation of what occurred?

nmlkj

Yes

nmlkj

If so, can you provide a briefly explain why?

14. Do you know someone other than yourself who has experienced

cultural prejudice or racism?

15. If you answered 'yes' to the question above, what is that person's

relationship to you?

nmlkj

Yes

nmlkj

If so, does their experience with prejudice and/or racism effect whether or not you will participate in clinical research

studies? Enter NA if no effect.

Parent

gfedc

Sibling

gfedc

Son/Daughter

gfedc

Husband/Wife

gfedc

Partner

gfedc

Other relative

gfedc

Friend

gfedc

Co-worker

gfedc

Roommate

gfedc

Professor

gfedc

Other (please specify)

1. Please select whether or not you agree or disagree with the following

items.

4. Survey (cont)

Strongly Disagree

Disagree

Neutral

Agree

Strongly Agree

To get people to take

part in a study,

medical researchers

usually do not explain

all of the dangers

about participation.

nmlkj nmlkj nmlkj nmlkj nmlkj

Participants should be

concerned about being

deceived or misled by

medical researchers.

nmlkj nmlkj nmlkj nmlkj nmlkj

Usually, researchers

who make mistakes

try to cover them up.

nmlkj nmlkj nmlkj nmlkj nmlkj

Medical researchers act

differently toward

minority subjects than

toward white subjects.

nmlkj nmlkj nmlkj nmlkj nmlkj

Medical researchers

unfairly select

minorities for their

most dangerous

research studies.

nmlkj nmlkj nmlkj nmlkj nmlkj

2. Please select whether or not you agree or disagree with the following

items.

3. Do you think that President Obama should urge people to participate in

clinical research?

4. Do your religous beliefs influence whether or not you would be trusting of

clinical research studies?

Strongly Disagree

Disagree

Neutral

Agree

Strongly Agree

Some medical

research projects are

secretly designed to

expose minority

groups to diseases

such as AIDS.

nmlkj nmlkj nmlkj nmlkj nmlkj

In general, medical

researchers care more

about doing their

research than about

the participants’

medical needs.

nmlkj nmlkj nmlkj nmlkj nmlkj

Researchers are more

interested in helping

their careers than in

learning about health

and disease.

nmlkj nmlkj nmlkj nmlkj nmlkj

Medical researchers

are generally honest in

telling participants

about different

treatment options

available for their

conditions.

nmlkj nmlkj nmlkj nmlkj nmlkj

Usually, medical

researchers tell

participants everything

about possible

dangers.

nmlkj nmlkj nmlkj nmlkj nmlkj

All in all, medical

researchers would not

conduct experiments

on people without their

knowledge.

nmlkj nmlkj nmlkj nmlkj nmlkj

Most medical

researchers would not

lie to people to try to

convince them to

participate in a

research study.

nmlkj nmlkj nmlkj nmlkj nmlkj

nmlkj

Yes

nmlkj

Yes

nmlkj

5. What (if anything) makes you uncomfortable about the idea of

participating in clinical trials?

6. Is there anything else that you would like to share that you have not yet

shared already?

1. The results of this study could potentially be used in a resesrach

publication. Your responses will be used as data to explain your feelings

about trust and clinical research.

Does the researcher have permission to use your responses as data in this

research study?

2. If you would like to receive information about the results of the study,

please enter an active email address where the information can be sent.

This information will be kept secure in a password protected database and

will only be used to distribute results of this study.

5. Study Results

Email Address:

Yes

nmlkj

Thank you for you participation!

Definition References

clinical research. (2009). In Encyclopædia Britannica. Retrieved July 28,

2009, from Encyclopædia Britannica Online:

http://www.britannica.com/EBchecked/topic/121756/clinical

-research

Clinical studies. (2005).

National Institutes of Health Clinical Center.

Retrieved July 28, 2009, from

http://www.cc.nih.gov/participate/studies.shtml

Clinical trial. (2005).

National Institutes of Health Clinical Center. Retrieved

July 28, 2009, from http://clinicalstudies.info.nih.gov/what_is_study.html

participant. (n.d.). The American Heritage

Dictionary of the English

Language, Fourth Edition. Retrieved July 29, 2009, from Dictionary.com

website: http://dictionary.reference.com/browse/participant

principle investigator (n.d.). Retrieved July 28, 2009 from medterms.com

website: http://www.medterms.com/script/main/art.asp?

articlekey=39306

Subject. (n.d.) Retrieved July 28, 2009 from

http://www.medterms.com/script/main/art.asp?articlekey=33376

trust. (n.d.). Dictionary.com Unabridged (v 1.1). Retrieved July 29, 2009,

from Dictionary.com website:

http://dictionary.reference.com/browse/trust

6. Thank You

Download
Save PDF to desktop

Email
Email completed PDF

Send for Signing
Email for others to sign

Print
Print document

NAME

African Americans And Trust Levels With Age (Eastern Michigan University)

View Audit Log
Print With Audit Log
Duplicate Document

Fill Online, Printable, Fillable, Blank African Americans And Trust Levels With Age (Eastern Michigan University) Form

Related forms

Fillable African Americans And Trust Levels With Age (Eastern Michigan University)

Fill Online, Printable, Fillable, Blank African Americans And Trust Levels With Age (Eastern Michigan University) Form

Related forms

First 20 documents completely FREE!