Advances Vol. 3, No. 1


46

African-Americans and Clinical Trials Research:
Recommendations for Client Engagement

Sharon E. Moore
Wanda Lott Collins

Abstract: African-Americans have, without their knowledge and consent, been used
as human guinea pigs in scientific and medical experiments by private and govern-
mental organizations. As a result many African-Americans approach the health care
industry with caution and apprehension. African-Americans are admonished to
remember the atrocities they once experienced and to approach participation in clin-
ical studies with skepticism. This paper presents an historical overview of conspiracy
theories, discusses various health issues that affect African-Americans, identifies for
whom participation in clinical trials could prove beneficial, and recommendsmeth-
ods that can be used to attract African-American clients as active participants in clin-
ical studies.

Keywords: African-Americans, conspiracy theories, clinical trials, research, patient
rights

Many African-Americans approach the health care industry and especially
medical researchers with caution and apprehension. Reese and Ahern
(1999) found that many African-Americans fear they will “end up being a

guinea pig in one of their experiments” (p. 554). Various conspiracy theories con-
tribute to their trepidation

Although not all of the common conspiracy theories are rooted in fact, some are.
Perhaps themost notable of these violations of human dignity occurred during the
Tuskegee Syphilis Study. During this United States Public Health Service sponsored
experiment, 107 of the 400menwhowere involveddiedbecause theywent untreated,
even though penicillin had been proven to be effective in curing the disease
(Fairchild & Bayer, 1999). They had been lured to participate in the experiment
under the promise that they would receive free medical care to cure a variety of
medical ailments fromwhich they suffered.Tuskegee is symbolic of unjust practices
of themedical community, unethical practices inhuman research, andgovernment
mistreatment of African-American people. It has caused many African-Americans
to be suspicious of the medical and public health authorities and is a major factor
in low participation among African-Americans in human research (Gamble, 1997).

Another incident of unethical research involving African-Americans occurred in
the 1970s. This well-publicized experiment was funded by the National Institute

Sharon E. Moore, Ph.D. is Associate Professor andWanda Lott Collins, Ph.D. is Assistant Professor at the
Raymond A. Kent School of SocialWork, University of Louisville, Louisville, Kentucky.

Copyright© 2002 Advances in SocialWorkVol. 3 No. 1 (Spring 2002) 46-59.
Indiana University School of SocialWork.



of Health. In that study, blood samples were taken without parental consent from
7,000 young, underprivileged boys from the Baltimore area. They thought they
were being tested for anemia (Washington, 1994). In actuality, theywere screened
to determine who among them had an extra “Y” chromosome, under the
assumption that individuals with an extra “Y” chromosome were foreseeable
criminal types. Many of these young men were later labeled criminals. These are
two of many examples of deceptive research practices that have contributed to
the “healthy paranoia” that exists among many African-Americans. The term
healthy paranoia refers to a positive defense mechanism use by African-
Americans in recognizing that racism exists and that white people must be
approached cautiously until they prove that they are trustworthy (Grier & Cobbs,
1968).

BELIEF IN CONSPIRACY THEORIES

Many of these theories assert negative actions by the government against African-
Americans. Turner (1993) indicates that theories of government conspiracy fall
into twomain categories: malicious intent, in which the government purposeful-
ly causes or increases social problems with African-Americans, and benign neg-
lect, whereby the government takes a nonchalant attitude to addressing social
problems. Other concerns focus on contamination theories that maintain that
efforts are made to harm the health of African-Americans in various ways.

Pervasiveness of Conspiracy Beliefs

In a survey of 2,000 African American residents from Philadelphia and Charlotte,
North Carolina, Turner andDarity (1973) found that up to 62% of the respondents
believed that the U.S. government was trying to decrease the African American
population. Parsons, Simmons, Shinhoster & Kilburn (1999) conducted the first
comprehensive empirical study of the beliefs of African-Americans on a number
of theories that asserted governmental wrong doings.They found that of the 1,104
African-Americans questioned, most believed in conspiracy theories, particular-
ly those involving government plots that target African-Americans. More than
half responded that the government directs genocidal efforts towards African-
Americans. These beliefs are as common among African- American professionals
as they are among nonprofessionals (Parsons, et al., 1999).

Among the common conspiracy theories held by African-Americans are that:

1. AIDS was developed by white scientists to be used as a form of African-
American genocide (Parsons, et al., 1999).

2. The National Centers for Disease Control was involved in the Atlanta
child murders as part of an experiment to extract the cancer drug inter-
feron from the tops of Black boys’ penises (Harris, 1996).

3. The Ku Klux Klan has economic ties to Troop Sportswear, Church’s Fried
Chicken, and Tropical Fantasy fruit drink (Turner, 1993).

4. Illicit drugs are planted in the African-American community by the U.S.
government for economic profit and as a form of racial genocide
(Parsons, et al., 1999; McWhorter, 2000).

47Moore, Collins/AFRICAN-AMERICANS AND CLINICAL TRIALS RESEARCH



48

5. The U.S. government purposefully investigates African-American elect-
ed officials in an effort to discredit them“in away it doesn’t dowithwhite
officials” (Ruffins, 1998, p. 27).

6. Norplant implants are a mechanism to permanently sterilize African-
American women (Turner, 1993).

7. The Sickle Cell Anemia screening program of the 1970s was a form of
government directed genocide (Wilkinson, 1974).

The Development of Conspiracy Theories

What is known about these theories is that they began in response to the racism
and mistreatment that African-Americans suffered during slavery. The Tuskegee
Study brought to light unethical research practices that had occurred for centuries.

During slavery, both slaves and free African-Americans were routinely exploited
by the medical profession. Their bodies were often used without consent for dis-
sections andmedical experimentation (Savitt, 1982). Following emancipation, sto-
ries of “night doctors” were common in the African-American community. Night
doctor was the term applied to medical students who allegedly stole cadavers for
training purposes and to professional thieves who sold living and dead African-
Americans to doctors who used them formedical research. In 1882, it was exposed
that African-American cemeteries were frequently pillaged by grave robbers who
later sold the corpses to Philadelphia medical schools (Thomas & Quinn, 1993).

Hence, conspiracy theories have become a part of the collective consciousness
of African-Americans and have been orally passed down through the informal
grapevine for generations. Many African-Americans believe that that they are tar-
geted for human experimentation because of their race. Subsequently, many
African-Americans understandably approach the medical community with con-
siderable apprehension. Belief in these theories is not necessarily pathological.
Indeed, they may serve to solidify the community and move it toward social
action. Being encouraged to approach participation in research with skepticism
and as a conscientious consumer is positive because it is empowering.
Alternatively, a negative consequence of this belief system is that African-
Americans do not benefit from legitimate research in areas such as mental health
and medicine (Dhooper &Moore, 2000).

Due in part to conspiracy beliefs, many African-Americans delay or postpone
seeking medical treatment, which often has dire consequences for them.
Numerous health problems disproportionately affect African-Americans. Effective
treatment strategies for many of these conditions could be developed through
clinical trials research that included African-American participants.

HEALTH PROBLEMS AND AFRICAN-AMERICANS

There are approximately 35.5millionAfrican-Americans.They represent about 13%
of theUnitedStatespopulation (U.S.Bureauof theCensus, 2001).Onaverage,African-
Americans live six fewer years thanwhites (Thompson&Chambers, 2000).Nearly 75
million of all Americans aged 12 and above report using illegal drugs at least once
during their lifetimes (National Institute ofDrugAbuse, 1998). Approximately 10%of
these are African American. However, African-Americans make up approximately

ADVANCES IN SOCIALWORK



36%ofU.S. citizenswhoaredrugdependent (National InstituteofDrugAbuse, 1998).
African-American women, more than others, have disproportionately higher rates
of death from diabetes, cancer, cardiovascular diseases, and breast cancer. They
are alsomore likely to struggle are substance abuse, addiction,HIV, andAIDS. AIDS is
now the leading cause of death among African-Americanwomen between the ages
of 25 and 44 years, representing a rate that is 12 times higher than that of their
white counterparts (Kumanyika,Morssink&Nestle, 2001; Phillips, 1997,). Generally,
when they do present themselves for treatment, they are in more advanced stages
of the disease and have more symptoms. Cultural beliefs, such as conspiracy the-
ories, coupled with socioeconomic variables are responsible for late diagnosis
(Kumanyika, Morssink & Nestle, 2001; Raveis & Siegel, 1998).

Gender Specific Problems

African American men are 76 times more likely than white men to die of a stroke
related to high blood pressure (Dwyer, 1995).They havemore problemswith phys-
ical mobility after age 65 due to chronic diseases and have a 50% higher rate of
prostate cancer than white males (Herbert, Hurley, Olendzki, Teas, et al., 1998;
Thompson & Chambers, 2000). There are 2.8 million African-Americans over the
age of 65 (U.S. Bureau of the Census, 2000). Although African-American elderly are
living longer, they are more likely to be infirm, have chronic diseases at earlier
ages, and be more physically limited in these illnesses (Allen-Kelsey, 1998).

Clinical trials are vital in health research and the development ofmedical knowl-
edge. They are the measure by which new therapies are investigated. “They allow
investigators to test biological hypothesis in living patients and they have the
potential to change the standards of care” (Davidoff, et al., 2001, p. 854). Before 1994,
most studies on the health of Americans conducted through academic medical
facilities using human subjects that were middle-class, white male, or married.
African-Americans were only minimally represented in these studies (Flaskerud &
Nyamathi, 2000). When they did participate, they were sometimes injected with
cancerous cells and cancer-producing substances, subjected to lobotomies, or
injected with hazardousmaterials (Dhooper &Moore, 2000). As a result of limited,
homogenous samples, research findings were sometimes erroneously generalized
to the entire population without considering that cultural variables are important
in diagnosing and treating health-related disorders in minority populations.
Additionally, African-Americans are more susceptible to an increase in mortality
and a decrease in quality of life when they are not included in health-intervention
research. Current controls that exist to minimize past abuses include the National
Research Act of 1974, which was passed after the Tuskegee study became public.
This legislation established guidelines whereby all federally-funded research that
involves human subjects requires prior approval from an institutional review
board and a data monitoring committee that expeditiously identifies evidence of
benefit or harm to research participants (Lilford, Braunholtz, Edwards & Stevens,
2001). Other controls include the development of the Patient’s Bill of Rights and the
establishment of the National Institute of Health’s Office of Research on Minority
Health in 1990.The office of Research onMinorityHealth oversees biomedical and
behavioral research on underrepresented minorities (Helmuth, 2000). Even
though these controls are in place, African-Americans are still underrepresented

49Moore, Collins/AFRICAN-AMERICANS AND CLINICAL TRIALS RESEARCH



in clinical trials.What follows are suggestions for ways inwhich African-Americans
can be encouraged to participate in clinical research activities.

PRESCRIPTIONS AND IMPLICATIONS FOR RESEARCH

Lack of information, fear of experimentation, lack of familiarity with bureaucratic
institutions, illiteracy, caregiver obligations, languagebarriers, and lackofbenefits are
several hindrances to research participation (Napoles-Springer, Grumbach,
Alexander&Moreno-John,2000).Thequestionthatbegsananswer ishowcanmedical,
public health, and social science researchers attract African-American volunteers
to participate in research studies. Burrus, Liburd, and Burroughs (1998) document
several strategies that can be useful in targeting and increasing African-Americans
participation in future public health research. They suggest 1) hiring a community
organizer; 2) establishingacommunity advisoryboard; 3) soliciting community input;
4) schedulingpublicmeetings for formal and informal question andanswer sessions;
5) involving key African American personalities; and 6) including the black church.

Furthermore, they suggest approaches which can be used to eliminate barriers
to participation and enhance trust among African-American research volunteers.
Those approaches focus on: 1) community engagement; 2) explanations of the
“why” and the “what”; 3) purposeful community relationships; and 4) non-tradi-
tional, culturally sensitive communications. What follows is a discussion of how
these approaches can be implemented.

Community Engagement

One strategy that can be used to maximize medical research participation among
African-Americans focuses on a model of community partnerships, which can be
reflective of community needs, perspectives, and health priorities (Napoles-
Springer, et al., 2000). There is agreement that community support is paramount
in establishing credibility among researchers and minority groups (Hatchett,
Holmes,Duran&Davis, 2000;Mastin, 2000;Witte,Berkowitz, Lillie&Cameron,1998).

Burrus, et al. (1998) discuss the importance of informing the community about
the proposed research to solicit their input. Hiring a well-known and respected
African-American health educator is another significant factor in organizing.
Equally important is the organizing of a community advisory board to serve as
overseers for the community. Its purpose is to question the process and to ensure
that the community will not be exploited. The advisory board provides the
research team with easier entry into the African-American community and
reduces what can be a time intensive process. Additionally, if at all possible, the
research should be conducted in either the participants’ community or an envi-
ronment where they are most at ease. Furthermore, African-American recruiters
or representatives who understand the task and can communicate the interest of
both parties should be utilized.

The Black church is still the primary place where African-Americans congregate
to address cultural, economic, and social issues. The impact and important role of
the Black church in garnering and portraying the positive energy of African-
American families is also recognized by Mastin (2000) in her study of media use
and civic participation in the African-American population. She wrote:

50 ADVANCES IN SOCIALWORK



The community church has long served as a facilitator of political action
for African-Americans. The African-American church enjoys a historical
reputation of working to improve members’ socioeconomic and politi-
cal conditions. Unlike many social organizations that draw attention to
social differences, often excluding individuals based on economic differ-
ences, many Black churches do a good job of minimizing such differ-
ences. In short, the African-American church has been able to facilitate
civic and political involvement among the economically diverse groups
in the African-American community. (p. 117)

In essence, Mastin’s (2000) findings clearly indicate that interpersonal relation-
ships and church involvement are strong predictors of civic participation among
African-Americans. This finding strongly suggests that including the Black church
as a key player in significant community events is a well-conceived strategic move
for researchers. Researchers have successfully approached African-American
churches that have large memberships, to aid them in their mission to solicit
African-American representation in public health studies (Burrus, et al., 1998;
Hatchett, et al., 2000). However, researchers’ recruitment efforts must be more
than superficial to maximize the availability of the church as a resource. It is not
enough to make an announcement and request help. Rather, individuals must be
contacted and actively encouraged to participate (Hatchett, et al., 2000).

Additionally, onsite informational meetings should be held with representatives
of the church to explain the goals and objectives of the study and to answer ques-
tions. Researchers would be wise to show sensitivity and take special care to
address all questions to the satisfaction of potential participants with honest and
forthright details. Schoen (1999) proposes “Giving investigators an opportunity to
discuss their work with the public, through media interviews and community
speaking engagements, canmotivate them to becomemore personally involved in
the product’s trial, proving a compelling reason to prioritize it” (p. 52).

Another recommendation is to work closely with various community facilitators
who have real and perceived positions of trust. These individuals can be recruited
to encourage and lend an active voice for participation in research efforts. Given
their high visibility within the African-American community, their collaboration
with the research teammay serve to enhance the validity of the study and height-
en awareness regarding the importance of the study. In essence, they convey a seal
of approval (Hatchett, et al., 2000).

Rather than researchers representing themselves as the community authority,
the power of “knowing” is maximized when shifted to the people. An often over-
looked fact is that African-Americans are weary of people who propose to know
what is best for them (Hatchett, et al., 2000). Within the African-American com-
munity are resources, insights, and knowledge that are unknown to social science
professionals (Saleeby, 1996). In defining the role of “expert” or “professional,”
Saleeby (1996) indicates that “a helper may best be identified as a collaborator or
consultant: an individual clearly presumed, because of specialized education and
experience, to know some things and to have some tools at ready but definitely not
the only one in the situation to have relevant, even esoteric knowledge and under-
standing” (p.14). Rather than operate from concealed and predetermined agen-

51Moore, Collins/AFRICAN-AMERICANS AND CLINICAL TRIALS RESEARCH



das, researchers should consider a paradigm shift that allows African-Americans
to define their needs andhealth priorities.The community engagementmodel uti-
lizes a “village” approach to inquiry and problem solving.

Explaining the “Why” and the “What”

Medical research campaigns must provide clear and understandable information
to potential participants. Because of past experiences, African-Americans often
feel justified in their negative perceptions and feelings of unfair treatment.
Therefore, participants must clearly and truthfully be told the “why” as well as the
“what” of their involvement in all verbal and written presentations. Croyle (1998)
advises that researchers “make sure that what subjects are being told is consistent
across the trial’s stages–recruitment, consent and education, randomization and
intervention–and across trial staff members” (p. 495). Research participants who
received limited information decreased their participation. Conversely, when
researchers provided people with detailed information concerning the nature of
the research, the benefits, and research opportunities, recruitment results in eth-
nic populations were enhanced (Napoles-Springer, et al., 2000).

Target advertisements placed in newspapers and publications to recruit partici-
pants often emphasize the benefits of the trials without mentioning the risks. This
is an identified concern and may raise questions about participants’ level of
understanding regarding what they are reading and subsequently signing. “Cash
payments and other incentives are commonplace in medical research. But they
are offered as compensation for a person’s time, not as a fee for accepting risk.
When you see an emphasis on cash payments and benefits, and little or no men-
tion of risks, that’s a real concern” (Weiss, 1998, p.A05). Napoles-Springer, et al.
(2000) found that respondents sometimes subjected themselves to potentially
harmful research and exploitation out of their dire need for money.

According to Napoles-Springer, et al. (2000) African-Americans greatly value sci-
entific knowledge that will improve their quality of life. Additionally, if concerns
are openly addressed, barriers to participation are reduced, and if tangible bene-
fits of participation could be accrued by their communities, their interest in scien-
tific knowledge will likely increase. Hatchett, et al. (2000) found that the failure of
African-Americans to participate in researchwas not solely due to the legacy of the
Tuskegee experiment but because they were not approached to be involved. Some
African-Americans feel that researchers take information and ideas about African-
Americans out to the majority community without caring that those under study
receive any significant or substantial benefit. In essence, some African-Americans
feel that they are exploited or that researchers do not give back to their community
(Napoles-Springer, et al., 2000). The willingness of African-Americans to partici-
pate in research seems strongly linked to whether or not the research has positive
benefits and if participants are informed of the outcomes.

Purposeful Community Relationships

Leo J. O’Donovan (1998) describes trust as “being vulnerable and taking a risk—a
leap of confidence—sometimes without any evidence that you will land on your
feet” (p. 178). He emphasizes that the heart of a professional relationship is trust.
For example, “We trust scientists and researchers will give us the right information

52 ADVANCES IN SOCIALWORK



as we care for our aging bodies. We don’t question how exactly Tylenol or the
Inderol we take works; we trust the medication to work—we trust the science
behind it” (p. 180). Yet, the biggest obstacle to clinical trial recruitment is public
wariness (Schoen, 1999). Participants need researchers that are reliable and trust-
worthy. A paradigm shift in public health and medical research necessitates that
research volunteers are informed of the true state of their health and given full
explanations about the benefits or dangers of any research intervention (Jennings,
1998). Only then can researchers begin to engender trust and recruit African-
American participants. Mistrust is real and it is serious. Are’an and Gallagher-
Thompson (cited in Hatchett, et al., 2000, p. 667) found that during recruitment
efforts with olderminority adults, “researchers’ willingness to address specific top-
ics of interests created an attitude of trust.”

Informed Consent

Informed consent is, of course, related to the issue of trust. Bioethicist Arthur L.
Caplan suggests that informed consent represents a moral challenge to
researchers. Research participants should always have access to second opinions
from experts who do not stand to gain from the outcome of the study (Jennings,
1998).The National Association of Social Workers’ Code of Ethics addresses
informed consent by prescribing that clientsmust be informed in clear andunder-
standable language regarding purpose, risks, and limits of services, relevant costs,
alternative to treatment, and the right to ask questions or to refuse or withdraw
their consent for treatment (Linzer, 1999; NASW, 1996, 1.03).

Informed consent originated in themedical field as amechanism for patients to
receive detailed and pertinent information about medical procedures and their
potential benefits and risks (Dunn, 2000; Linzer, 1999). Linzer (1999) indicates that
social work practice includes a burden for informed consent that extends far
beyond superficial efforts. Informed consent extends beyond obtaining signed
release forms granting access to confidential information (Kutchins, 1991). This
legal and ethical duty entails providing clients with full disclosure relative to all
service or treatment areas, which can have an impact on the client’s right to vol-
untarily participate or decline participation.

Therefore, it cannot be assumed that participants have given their full consent
to participate in research studies until they receive full disclosure of all relevant
information related to their participation. In cases where volunteers need support
or assurance, Croyle (1998) advises involving family members in the informed
consent process and recommends strategies for clarity in the consent process
including the use of:

1. various font sizes, subheadings, and bullets in the consent form instead
of long unbroken text;

2. printed materials as a backup, but with preference given to oral and
aural communications to explain information; or

3. CD-ROM or audio tape presentations with the information to enhance
volunteer understanding (p. 495).

53Moore, Collins/AFRICAN-AMERICANS AND CLINICAL TRIALS RESEARCH



54

Non-Traditional Culturally Sensitive Communications

Traditional generic approaches to the promotion of medical research projects
often prove to be ineffective (Mastin, 2000). Empirical evidence suggests that those
with lower socioeconomic status and ethnically diverse populations appear to
respond less to traditional recruitment methods (Mastin, 2000; Napoles-Springer,
et al., 2000; Witte, et al., 1998). Non-traditional, culturally-sensitive communica-
tions that include the use of interpersonal networks (such as social gathering
places, the Black church, neighborhood organizations, beauty salons, barber-
shops) and African-American celebrities to bring important public health infor-
mation to the African-American community should be adopted (Mastin, 2000;
Napoles-Springer, et al., 2000;Witte, et al., 1998).

In an effort to protect billions of investment dollars slated for new drugs, phar-
maceutical companies are scrambling to recruit clinical participants for drug trials.
Many of the newer drugs will offer cures for or better management of conditions
such as high blood pressure, diabetes, AIDS, cancer, and cardiovascular disease.To
shift the negative perception about clinical trials, the pharmaceutical industry
must recognize the need for relevant community campaigns. Schoen (1999) indi-
cates, “With all the pressure to implement trials and submit results quickly, com-
panies sometimes treat effective communications as an after-thought, rather than
a key strategic tool” (p. 51). Schoen further suggests providing videos, brochures,
and other information to clinical sites in order to raise the level of awareness
among African-Americans about disease.

The readability of written materials may also affect recruitment. Volunteers are
not likely to risk embarrassment if they are semi-literate. Rather than succumb to
shame and humiliation, it is sometimes a natural response to decline involvement in
an activity in order to save face. Advertisements and other forms of promotional
communications such as brochures, pamphlets, posters, letters, flyers, and ban-
ners have been proven more effective when written at fifth or sixth grade literacy
levels (Burrus, et al., 1998). According to Fackelmann (1998), “about 90 million
adults in theUnited States have literacy skills rankingbelow7th grade” (p. 15).There-
fore, the readability level of written communication is an important consideration.

SUMMARY OF RECOMMENDATIONS

Participation in research efforts by African-American populations may be
enhanced through a strengths-based and empowerment framework (Blundo,
2001; Brun & Rapp, 2001; Early, 2001; Saleeby, 1996; Turner, 2001). The strengths-
based perspective is an empowerment approach that focuses on the strengths of
individuals, families, and communities, rather than problems or pathology.
Saleeby (1996) points out that the strengths approach requires an accounting of
what people know and what they can do (p. 297). In a strengths approach, practi-
tionersmust engage individuals, families, and communities as equals. “Theymust
be willing tomeet clients eye to eye and to engage in dialogue and amutual sharing
of knowledge, tools, concerns, aspirations, and respect” (p. 303). Saleeby’s per-
spective provides an explanatory framework that highlights that when communi-
ties are providedwith information, resources, and support, helpers aswell as com-
munity residents are likely to benefit. The principles that Saleeby (1996) believes



particularly important to the strengths/empowerment perspective are: 1) lan-
guage—the practice of using words to elevate or to lift and inspire; 2) empower-
ment—the process of assisting people to discover and to use the resources and
tools within and around them; 3) resilience—the recognition that in spite of adver-
sity, people accumulate skills, abilities, knowledge, and insight; 4) membership—
the idea of valuing individuals as part of a viable group or community; 5) health
and wellness—the belief that people’s innate resilience and knowledge can be
used to help them overcome trauma and embrace community vitality; and 6)
beliefs and emotions—the concept that personal health and emotions in the con-
text of daily living can transcend to community health.

RECOMMENDATIONS FOR CLIENT ENGAGEMENT

A strengths-based empowerment perspective may be used as a foundation for
researchers who hope to engage African-Americans in clinical trials or public
health research. Recommended strategies include the following:

1. Approach African-Americans from an empowerment perspective,
believing that they can provide and interpret relevant information
about their needs and priorities and can offer their expertise to
researchers.

2. Assume that African-Americans want to be included in relevant
research and that because of the unequal distribution of power, oppor-
tunities, rights, and responsibilities, their voices often go unheard.

3. Convey a sense of reciprocity. Expect to receive ideas and cooperation
and also expect to give something of value back to the community (e.g.,
briefings regarding the research outcomes, an ongoing community
presence, donations to related causes, technical or professional assis-
tance with identified concerns or requests for specific help, and so
forth). In other words, avoid a one-way dynamic and being invisible
until something is needed.

4. Honor the fiduciary relations. On a continuous basis, inform potential
research volunteers of specific risks and benefits.

5. Protect research volunteers. It is imperative that researchers are reliable
and trustworthy.

6. Increase the visibility of African-American researchers as well as
African-American personalities within the community in all phases of
research.

7. Create public forumswithin theAfrican-American community in famil-
iar and comfortable environments, where honest dialog about the
nature of the research can occur.

8. Include representatives of the religious community in significant ways.

9. Maintain candid and regular dialogue and a willingness to listen to,
instruct, and reassure participants.

10.Ensure that all written communications are compatible with the edu-
cational level of the participants.

55Moore, Collins/AFRICAN-AMERICANS AND CLINICAL TRIALS RESEARCH



11.Identify places within the African-American community (such as
churches, laundromats, beauty salons, barbershops, and social organi-
zations) that would be promising places to recruit, distribute informa-
tion, and educate the community about research campaigns.

IMPLICATIONS FOR SOCIALWORK EDUCATION

The strengths-based empowerment perspective has implications and application
for a broad range of professionals, including social work educators. “Historically,
the social sciences, which includes the profession of social work, have negatively
stereotyped African-Americans andmost American social institutions have related
to African-Americans from a white Anglo middle-class orientation” (Dhooper &
Moore, 2001, p. 123). Additionally, traditional social work curriculum has focused
on disempowerment, deficits (problem focus), individual disorders, and/or
pathology (Blundo, 2001; Saleeby, 1997). Similarly, a large percentage of agency
field practicums followed a diagnosis and problem-focused orientation. Themed-
ical or pathology model was therefore reinforced for students in schools and in
agency settings. The shift towards embracing clients’ strengths, individually and
collectively, means acknowledging that clients’ are the best authorities in defining
their tribulations. This is a transformational evolvement in social work education
and practice. As social workers assist individuals and communities, they are chal-
lenged to use conceptual lenses that allow them to visualize people’s hopes and
dreams, based on their assets and strengths. Brueggemann (2002) asserts that:

People who experience injustice, intolerance, or economic or political
oppression need to define their own issues on their own terms, regard-
less of the size of their group, their influence, their perception, or the
approval of the majority of the population.When the influential usurp
their right, they not only steal people’s humanity but assume that peo-
ple in the mass are incapable of understanding their own social situa-
tion; they exclude people from the process of making their own lives
better. (p.43)

Blundo (2001) underscores this point of view and asserts that “the strengths per-
spective offers the profession an opportunity to change frames and to collaborate
with individuals, families, and communities in a more egalitarian working rela-
tionship based upon their strengths and resilience” (p. 301). In social work prac-
tice, the use of the strengths and empowerment perspective with families can aid
practitioners in identifying strengths to build on. They also increase their ability to
gain knowledge regarding desired outcomes and clarity regarding what families
want to achieve andunderwhat conditions.Thismodel relegates the“expert” from
the position of “all-knowing” to a more equal position of partnering. Clients are
positioned to share power, which permits them to demonstrate their strengths and
resilience in a collaborative environment. In essence, this framework then pre-
pares social workers to teach and to be taught.

CONCLUSION

The inadequate participation of African-Americans in research studies suggests
implications that may negatively impact the understanding of health and social

56



factors among this population. The challenge for researchers is to be more aware
of how socioeconomic factors and racism may discourage African-Americans
from participating in valuable research. In particular, social scientists need to be
aware that fear, past medical and government practices, mistrust, and a lack of
knowledge about bureaucratic practices are primary reasons that African-
Americans do not participate in research studies. Equally important is an under-
standing that mistrust of research is pervasive among African-Americans.
Therefore, it seems reasonable to suggest that more concerted efforts to engage
minority researchers, to address perceived and real barriers, and to improve
awareness of racial and ethnic disparities would increase the level of African
American participants in legitimate research studies. A strengths-based and
empowerment approach allows individuals, families, communities, researchers,
and other “helpers” to become co-participants with African-Americans to discov-
er the power within themselves and to develop consensus in working as change
agents.

References

Allen-Kelsey, G.J. (1998). Caregiver burden among African-American and Anglo-American family care-
givers. Topics in Generic Rehabilitation, 14(1), 63-66.

Blundo, R. (2001). Learning strengths-based practice: Challenging our personal and professional frames.
Families in Society, 82(3), 296-304.

Brueggemann,W.G. (2002). The practice of macro social work (2nd ed., rev.). Belmont, CA:Wadsworth.

Brun, C., & Rapp, R.C. (2001). Strengths-based case management: Individuals’ perspectives on strengths
and the case manager relationship. SocialWork, 46(3), 278-288.

Burrus, B., Liburd, L.C., & Burroughs, A. (1998). Maximizing participation by black Americans in popula-
tion-based diabetes research: The project direct pilot experience. Journal of Community Health, 23(1),
15-27.

Croyle, R. T. (1998). One investigator’s tip for building patient trust. Journal of the National Cancer
Institute, 90(7), 495.

Davidoff, F., DeAngelis, C.D., Drazen, J.M., Hoey, J., Hojgaard, L., Horton, R., Kotzin, S., Nicholls, M. G.,
Nylenna, M., Overbeke, A.; Sox, H. C., Van Der Weyden, M.B., & Wilkes, M. S. (2001). Sponsorship,
authorship, and accountability. The Lancet, 358(9285), 854-856.

Dhooper, S.S., & Moore, S.E. (2000). Social work practice with culturally diverse people. Thousand Oaks,
CA: Sage.

Dunn, D. (2000). Staff development special: Exploring the gray areas of informed consent. Nursing
Management, 31(7), 20-25.

Dwyer, J.H. (1995). Genes, blood pressure and African-Americans. The Lancet, 346(8972), 392-393.

Early, T. (2001). Measures for practice with families from a strengths perspective. Families in Society,
82(3), 225-232.

Fackelmann, K. (1998). Informed consent—not. Science News, 154(1), 15.

Fairchild, A.L., & Bayer, R. (1999). Uses and abuses of Tuskegee. Science, 284(5416), 919-921.

Flaskerud, J.H., & Nyamathi, A.M. (2000). Attaining gender and ethnic diversity in health intervention
research: Cultural responsiveness versus resource provision. Advances in Nursing Science, 22(4), 1-15.

Gamble, V.N. (1997). Under the shadow of Tuskegee: African-Americans and health care. American
Journal of Public Health, 87(11), 1773-1778.

Grier,W. H., & Cobbs, P.M. (1968). Black rage. NewYork: Basic Books.

57Moore, Collins/AFRICAN-AMERICANS AND CLINICAL TRIALS RESEARCH



Harris, T. (1996). I heard it through the grapevine: Rumor in African-American culture. African American
Review, 30(1), 117-119.

Hatchett, B., Holmes, K., Duran, D. A., & Davis, C. (2000). African-Americans and research participation:
The recruitment process. Journal of Black Studies, 30(5), 664-675.

Helmuth, L. (2000). NUH, under pressure, boosts minority health research. Science, 288(5466), 596-597.

Herbert, J.R., Hurley, T.G., Olendzki, B.C., Teas, J., et al.( 1998). Nutritional and socioeconomic factors in
relation to prostate cancer mortality: A cross-national study. Journal of the National Cancer Institute,
90(21), 1637-1647.

Jennings, L. (1998). Rx for health professionals: Honesty, fairness, respect. The Futurist, 32(8), 10-11.

Kumanyika, S.K., Morssink, C.B., & Nestle, M. (2001). Minority women and advocacy for women’s health.
American Journal of Public Health, 91(9), 1383-1388.

Kutchins,H. (1991).The fiduciary relationship:The legal basis for social workers’ responsibilities to clients.
SocialWork, 36(2), 106-113.

Lilford, R.J., Braunholtz, D., Edwards, S., & Stevens, A. (2001).Monitoring clinical trials-interimdata should
be publicly available. British Medical Journal, 323(7310), 441-442.

Linzer, N. (1999). Resolving ethical dilemmas.NeedhamHeights, MA: Allyn and Bacon.

Mastin, T. (2000). Media use and civic participation in the African-American population: Exploring partic-
ipation among professionals and nonprofessionals. Journalism and Mass Communication Quarterly,
77(1), 115-127.

McWhorter, J.H. (2000). Losing the race: Self-sabotage in black America. NewYork, NY: The Free Press.

Napoles-Springer, A., Grumbach, K., Alexander,M., &Moreno-John, G. (2000). Clinical researchwith older
African-Americans and Latinos: Perspectives from the community. Research on Aging, 22(6), 668-691.

National Association of SocialWorkers. (1996). Code of Ethics.Washington, DC: Author.

National Institute of Drug Abuse (1998). Drug abuse among racial/ethnicminorities. (NIHpublicationNo.
98-3888).Washington, DC: CSR Incorporated.

O’Donovan, L.J. (1998). A profession of trust: Reflections on a fundamental virtue. Vital Speeches of the
Day, 64(6), 178-182.

Parsons, S., Simmons,W., Shinhoster, F., & Kilburn, J. (1999). A test of the grapevine: An empirical exami-
nation of conspiracy theories among African-Americans. Sociological Spectrum, 19(2), 201-223.

Phillips, P. (1997). No plateau for HIV/AIDS epidemic in U.S. women. The Journal of the AmericanMedical
Association, 277(22), 1747-1749.

Raveis, V.H., & Siegel, K. (1998). Factors associated with HIV-infected women’s delay in seeking medical
care. AIDS Care, 10, 549-562.

Reese, D.J., & Ahern, R.E. (1999). Hospice access and use by African-Americans: Addressing cultural and
institutional barriers through participatory action research. SocialWork, 44, 549-560.

Ruffins, P. (1998). The Tuskeggee experiment’s long shadow. Black Issues in Higher Education, 15(18), 26-
29.

Saleeby, D. (1996). The strengths perspective in social work: Extensions and cautions. Social Work, 4(3),
296-305.

Saleeby, D. (Ed.). (1997). The strengths perspective in social work practice (2nd ed). NewYork: Longman.

Savitt, T.L. (1982). The use of Blacks for medical experimentation and demonstration in the old South.
Journal of Southern History, 48, 331-348.

Schoen, L. (1999). Clinical trials’ black eye. Pharmaceutical Executive, 19(12), 50-56.

Thomas, S.B., & Quinn, S.C. (1993). Understanding the attitudes of Black Americans, In J. Stryker & M. D.
Smith (Eds.), Dimensions of HIV prevention: Needle exchange (pp. 99-128). Menlo Park, CA: Henry J.
Kaiser Family Foundation.

Thompson, S.N., & Chambers, J.W. (2000). African self-consciousness and health promoting behaviors
among African American college students. Journal of Black Psychology, 26(3), 330-345.

58



Turner C., & Darity,W.A. (1973). Fears of genocide among Black Americans as related to age, sex, and reli-
gion. American Journal of Public Health, 63, 1029-1034.

Turner, S. G. (2001). Resilience and social work practice:Three case studies. Families in Society, 82(5), 441-448.

Turner, P.A. (1993). I heard it through the grapevine: Rumor in African-American culture. Berkeley, CA:
University of California Press.

U.S. Bureau of the Census. (2000). Total resident population by 5-year age groups, race, and Hispanic ori-
gin with special age categories: Middle series, 1999 to 2010.
http://www.census.gov/population/www/projections/natsum-T3.htm

U.S. Bureau of the Census. (2001). Resident population estimates of the U.S. by sex, race, and Hispanic ori-
gin: April 1, 1990 to July 1, 1999, with short-term projection to November 1, 2000.
http://www.census.gov/population/estimates/nation/intfile3-1.txt.

Washington, H.A. (1994). Human guinea pigs. Emerge, 6(1), 24-35.

Weiss, R. (1998). Volunteers at risk in medical studies: Complex research projects strain system of safe-
guards series: Science on the ethical frontier. TheWashington Post, A1-A9.

Wilkinson, D.Y. (1974). For whose benefit? Politics and Sickle Cell. The Black Scholar, 5, 2631.

Witte, K., Berkowitz, J.M., Lillie, J.M., &Cameron, K. A. (1998). Radon awareness and reduction campaigns
for African-Americans: A theoretically based evaluation.Health Education and Behavior, 25(3), 284-303.

Author’s Note:

Address correspondence to: Sharon E. Moore, Ph.D., Raymond A. Kent School of Social Work, University
of Louisville, Louisville, KY 40292 USA. E-mail: semoor02@gwise.louisville.edu.

59Moore, Collins/AFRICAN-AMERICANS AND CLINICAL TRIALS RESEARCH