Journal of Substance Abuse Treatment, Vol. 10, pp. 11-75, 1993 0740-5472/93 $6.00 + .

OO
Printed in the USA. All rights reserved. Copyright 0 1993 Pergamon Press Ltd.

PERSPECTIVE

Conducting HIV Outreach and Research

Among Incarcerated Drug Abusers:
A Case Study of Ethical Concerns and Dilemmas

HARVEY A. SIEGAL, Pm, ROBERT G. CARLSON, Pm, RUSSEL FALCK, BS,

ROBERT D. REECE, PhD, AND TERRY PERLIN, PhD
Department of Community Health, Wright State University, School of Medicine, Dayton, Ohio

Abstract- This case involves the examination of an ethically problematic event that arose while
we were conducting an outreach/early intervention research demonstration project targeted at women
who exchange sex for drugs. Subjects were drug abusers -primarily crack-cocaine smokers-recruited
by outreach workers on “the street” and in jail. Participants were offered counseling, HIV and syph-
ilis screening, and risk-reduction education. A woman who was a jail inmate tested positive for
HIV In order to obtain medical and other assistance, she would have to reveal her serostatus to
jail officials. This could result in isolation and the possibility of harm from others in the jail once
the information about her circulated. The case highlights the problems inherent in HIV testing of
incarcerated drug abusers, especially in low HIV seroprevalence areas. We recommend that a com-
munity empanel a committee composed of substance abuse treatment and medical professionals,
civil rights advocates, criminal justice personnel, and ethicists to formulate humane and effective
policy in light of its drug abuse and HIV problems and its resources.

Keywords- conducting HIV outreach; HIV; incarcerated; drug abusers; ethics.

INTRODUCTION Siegal, 1986; Siegal, 1978), unanticipated problems can

readily emerge. We have recently encountered such an
THE FIRMBASIS of the practitioner-patient relationship,
ethically problematic event.
as well as that of the researcher-subject relationship,
We present this annotated case to provide clinicians
is honesty and promise-keeping. In the era of AIDS,
and researchers with an opportunity to consider the
are there any circumstances under which withholding
moral dilemmas, which will certainly increase in fre-
significant, and even potentially life-sustaining infor-
quency as incarcerated persons (and psychiatric pa-
mation, can be justified? When investigations and in-
tients) infected with the human immunodeficiency
terventions take place outside of the laboratory, or
virus (HIV) have need for educational, medical, and
even in “extreme situations” (Goffman, 1961; Reece &
rehabilitative services. We believe that these observa-
tions are particularly germane to low-HIV seropreva-
The Dayton HIV/STD Crack-Cocaine Prevention Project, conducted lence areas in which large numbers of HIV-infected
in 1990, was funded by the Ohio Department of Health, Robert prisoners have not yet emerged.
Campbell (AIDS Unit Supervisor), and the Ohio Department of Al-
cohol and Drug Addiction Services, Rachelle Martin (HIV/AIDS
coordinator). We also wish to recognize Richard Rapp, MSW, BACKGROUND
Wright State University (Project Director), Colleen McCutchen
(Counselor-Educator), The Montgomery County (Ohio) Combined As part of a larger outreach study to identify injec-
Health District, and Abdur Zafr, DPA, of Project CURE, Inc. for tion drug users (IDUs) at risk for HIV infection and
their assistance. to assist them in recognizing and modifying high-risk
Requests for reprints should be addressed to Harvey A. Siegal,
PhD, Professor and Director, Wright State University, School of
Behaviors, we discovered that our community had a
Medicine, Substance Abuse Intervention Programs, Post Office Box sizable crack-cocaine problem. Crack users are also at
927, Dayton, OH 45401. considerable risk for HIV infection since this form of
71
 72
drug abuse has been linked with high-risk sexual be-
haviors (Inciardi, 1989). Concerned about this, we
designed a pilot outreach effort directed toward women
who traded sex for crack or money to purchase crack
(or powder cocaine). These women were targeted be-
cause ethnographic research suggested they engaged in
sexual behaviors that placed them at high risk for HIV
infection and other sexually transmitted diseases (Carl-
son & Siegal, 1991).
Our AIDS crack-cocaine outreach and prevention
research project was supported by joint funding from
Ohio’s Department of Health and the Division of Al-
cohol and Drug Abuse Services. The project employed
outreach workers, themselves recovering drug users,
to identify and recruit 150 subjects (Siegal et al., 1992).
The criteria for project participation included (a) be-
ing at least 18 years of age; (b) not currently enrolled
in drug treatment; and (c) crack or powder cocaine use
in the previous three months. Outreach workers would
recruit potential subjects primarily “on-the-street,” but
also in jail.
Once an eligible individual agreed to participate, an
informed consent document was executed. This doc-
ument, which had passed through our Human Subjects
Review Board, fully described the project, outlined its
potential benefits and risks, specified the small stipend
for participation, and assured the confidentiality of all
the data collected-with the following exception.
Subjects were offered voluntary HIV and syphilis
screening. Because this was a research project, the re-
sult of an HIV test was reported only to the subject.
Clear protocols for assisting HIV-positive participants
in accessing medical and psychotherapeutic care, on
a voluntary basis, were in place. These protocols were
the same that had been used successfully with our
larger AIDS research project among injection drug
users and their sex partners. However, in the crack-
cocaine research project, positive syphilis serologies
were reported, per state law, to the local health de-
partment, too, so that standard procedures for partner
notification could be initiated. This exception to a par-
ticipant’s confidentiality was described clearly in the
informed consent document. Any other information -
such as drug use, sexual practices, or criminal activ-
ity-was held in strict confidence. Jail authorities
agreed with the research project protocols and allowed
inmates to participate on a voluntary basis with the un-
derstanding that no information about the subjects
would be forthcoming.
As part of the research protocol, subjects were ques-
tioned extensively - using a standardized interview
schedule administered by a trained interviewer-about
drug use, sexual practices, health status, and back-
ground characteristics. Pretest counseling for HIV and
syphilis infection was conducted, and a blood sample
was collected. An educational session, followed by
posttest counseling, was conducted by a trained coun-
H.A. Siegal et al.
selor when the test results became available. The in-
tervention emphasized eschewing drug use through
treatment advocacy and adopting safer sexual behav-
iors (condom use and other barrier protection, re-
duction in the number of sex partners, the benefits of
abstinence and single sex partner relationships, etc.).
The following discussion presents a case that proved
difficult, even troubling and painful, for an experi-
enced HIV research team that had employed similar
research and HIV testing protocols successfully with
more than 500 not-in-treatment injection drug abus-
ers over a 2-year period.
THE CASE
The setting was one of the area’s correctional facili-
ties. The case involved a young woman we’ll call
“Shelly” (not her real name) who was serving time at
the jail for solicitation and drug abuse, for both of
which she had prior convictions.
Shelly responded to a general announcement made
in the jail- to women recently remanded-about the
project. The announcement explained how inmates
could contact the outreach workers to arrange for a
screening interview. Shelly met the project’s eligibil-
ity criteria, and she was admitted to the study. She re-
ported a history of more than 10 years of drug abuse
that included intravenous injection of heroin and co-
caine. More recently, her preference had been for
smokable cocaine (crack). Shelly supported herself
through prostitution, claiming that she regularly made
$500 a day.
During her interview, Shelly volunteered that she
had been having sex while incarcerated. She described
sexual activities with fellow inmates and intimated con-
tact with institutional staff as well.
Shelly consented to have a blood sample drawn for
HIV and syphilis tests. In the pretest counseling ses-
sion, which preceded the blood draw, she was in-
formed that the results would be made available to her
in a posttest counseling session in about 7 to 10 days.
The results returned a week later. The test for syph-
ilis was nonreactive. Her HIV antibody test, however,
was positive. In fact, the physician who interpreted the
confirmatory Western blot test result described the in-
fection as “raging” on several of its bands.
Our research group had a problem. Shelly was one
of only two project participants who had a positive
HIV antibody test result, the other individual being re-
cruited from the community at large. It was at this
point that we realized that our informed consent pro-
tocols were appropriate for HIV seropositive individ-
uals who were free in the community and not for those
who were incarcerated. Incarcerated individuals sim-
ply do not have the same kind of freedom to make
their own decisions upon learning of HIV infection
that individuals free in the community have.
Ethics and HIV Outreach
Shelly needed to be told about her test results so that
medical treatment might be initiated and psychologi-
cal and other support provided. However, if she was
told of her test results and wanted any kind of assis-
tance, she would have to reveal her condition to prison
officials. If she revealed her HIV status to them, a
number of unpleasant, even disastrous things could
happen. To begin, she might be placed in solitary con-
finement. This was stipulated by the institution’s rule
which required that any inmate who has a contagious,
or potentially contagious, disease be separated from
the general inmate population to prevent further dis-
ease transmission. The reason for her move would be
made known to prison staff and perhaps eventually to
other inmates through the “grapevine.” Then, given
her claim of sexual relations while incarcerated, her
safety might even be in jeopardy once information
about her HIV status circulated.
COMMENTARY
There are two related ethical problems found in this
case. First, how can a promise made to Shelly - to be
told the results of a test for which she gave voluntary
consent-be kept, given the potential perils to her?
Second, what obligations to others-inmates and in-
stitutional staff-might influence our choice of action?
The finding of a positive HIV antibody test means
that Shelly has a potentially transmissible infectious
disease, and may, given the stage of infection, develop
opportunistic infections as well. Whether or not she
has transmitted the HIV to others inside the jail-or
outside-remains unknown. While apparently asymp-
tomatic, we also presume that she would benefit from
medical assessment, treatment, and supportive coun-
seling. Informing her of her positive HIV status is both
a clinical and an ethical process, involving medical rec-
ommendations (e.g., beginning AZT therapy), as well
as suggesting value-based modification of behaviors
(e.g., ceasing substance abuse and initiating safer sexual
practices). Were both sets of recommendations fol-
lowed, a variety of treatment options-medical, psy-
chosocial, psychotherapeutic-could be offered.
Our concerns for Shelly’s welfare are also juxta-
posed with our concerns for other inmates-and jail
staff-who may be exposed to other infections, such
as tuberculosis, made more likely by her compromised
immune system. Moreover, both inmates and staff
may have been- or may be-exposed to HIV infec-
tion, if the reported unprotected sexual contacts with
such individuals continues to occur.
PSYCHOLOGICAL, SOCIAL, AND
INSTITUTIONAL FACTORS
Complicating the case are its institutional setting and
the dual concerns of the project’s scientific research
73
and community service agendas. By design, the out-
reach study promised a confidential relationship be-
tween investigators and subjects (with the limitation
of prior waiver of privilege for the purpose of state-
mandated reporting of positive syphilis results). The
agreement, by jail authorities, to remain “in the dark”
about test results-an indispensable element of the
promise of confidentiality to the research subjects-
was also ethically valid.
Given the low (<5%) HIV seroprevalence among
injection drug abusers in the study’s geographic area
and the positive experience with HIV testing among
the community’s drug abusers, the scenario of an HIV
positive prisoner was not given adequate considera-
tion -by the research group or the correctional facil-
ity itself. In hindsight, however, the likelihood that an
inmate would test positive and would need the aid of
authorities seems painfully plausible.
The correctional facility staff knew nothing of
Shelly’s situation. We presumed, however, that they
would want to know of her HIV seropositive status for
many reasons: concern for public health and inmate
safety; a need to maintain order within the institution;
a desire to see Shelly given appropriate assistance. The
research team also had a viewpoint: they had a stated
obligation to offer Shelly her HIV test result and, be-
cause they knew about her alleged high-risk behaviors
while incarcerated, may have felt a duty to as-yet un-
identified other persons at the jail. They also had ob-
ligations to the funding agencies and to the Human
Subjects Review Board, which authorized their work,
to provide informed consent to subjects, to protect
their confidentiality, and to ensure the safety of the
study participants.
State and county regulations vary with regard to re-
porting of information regarding sexually transmitted
disease infection, HIV infection, and AIDS diagnosis.
The investigators in this project were not engaged in
a doctor-patient relationship with their subjects; their
legal responsibilities regarding reporting are, thus,
somewhat ambiguous. A Federal Certificate of Con-
fidentiality, granted to drug abuse research projects,
however, made it possible to disregard the reporting
obligation imposed by state law (Sec. 302(d) P.H.S.
Act (42 U.P.C. 242(d))).
Within the jail there are policies, rules and regula-
tions, as well as “customary behaviors,” which influ-
ence this case. The mandate to place inmates with
contagious diseases in solitary confinement, for exam-
ple, is surely an old, if not unexamined, procedure. It
is likely that the policy was written in a past era of con-
cern for tuberculosis (which may still be appropriate
given the recent nationwide increases in tuberculosis
cases). Does it, or should it, apply to HIV positive in-
mates? Do such persons, indeed, have a “contagious
or potentially contagious disease” given the radically
different ways the infections are spread? Or, is such

a policy designed to protect HIV-infected individuals
from the stigma, and even potential violence, from
other inmates? And in this case, does a subject’s knowl-
edge of behaviors known to transmit HIV support the
initiation of quarantine procedures?
Because the HIV-infected prisoner remains rare in
many facilities outside of HIV epicenters, public health
and prison officials may respond to such people in a
reactionary manner. For example, in one case in a
nearby county, the coroner demanded the immediate
cremation of the remains of a prisoner who had died
of an AIDS-related illness (Rutchick, 1990). In another
county, the Health Commissioner ordered that the
clothing, bedding, and utensils of a prisoner with
AIDS be burned after he was released.
A RESOLUTION AND A
SUGGESTED DIRECTION
The simple solution to the case would be to inform
Shelly of her HIV test result and let her make her own
decision about what she wants to do, who she wants
to inform, and so on. In “normal circumstances,” con-
ducting research among individuals free in the com-
munity, that is what we would do, even though we
realize that receiving HIV-positive test results in any
setting is extremely distressing, to say the least.
But, Shelly is not in “normal circumstances.” She
is an inmate in a “total institution” where she may not
feel that she has any real choices. In fact, she does
have a choice. She can receive the information and not
report it to the prison officials. Of course, this strat-
egy would mean that Shelly would be unable to gain
access to the medical or psychotherapeutic support she
needs. In addition, this strategy would not be of any
help to the inmates or correctional staff.
Unless personal knowledge of her emotional con-
dition leads us to make an exception to providing HIV
test results, the ethical presumption would seem to fa-
vor our telling her what we know, both out of respect
for her autonomy and because of our promise to her.
Ultimately, it is her health that is at stake, and she
should be the one to decide whether to risk the conse-
quences of isolation that may occur if she reports her
condition to the authorities in an effort to gain psy-
chological and medical support. If we do choose to
share this information with her, it would be our duty
to help her understand the courses of action open to
her and the possible consequences of them. More-
over, should she choose to tell prison authorities, it
would be our duty to advocate on her behalf because
in our informed consent document we state that in the
case of a positive HIV test (or syphilis test) result, we
will assist an individual to gain access to appropriate
services.
In the case of Shelly, the research staff was able to
avoid the difficult ethical issues that became very trou-
Siegal et al
blesome in the course of several days of deliberation!
including consultation with the project physician. For.
tuitously, we discovered that Shelly was to be released
from jail in only a few days. Upon the advice of our
project’s consulting physician, we simply waited until
she was discharged and then informed her of the HIV
positive test results in a post-counseling session at the
project’s site office, thereby allowing her the choice 01
seeking support and treatment. Following our existeni
protocols, we provided Shelly with information aboui
community resources for HIV positive people, stressed
the benefits of contacting them, and offered our as-
sistance to access them.
We should add that as soon as we recognized the
implications of Shelly’s positive test result, we discon-
tinued offering HIV screening to recently incarcerated
crack users. Although this resolved the immediate
problem, we also recognized that our concurrent AIDS
research project among IDUs and their sex partnera
could potentially expose us to the same ethical di-
lemma. For instance, a participant who is interviewed
and screened for HIV while free in the community,
may be incarcerated by the time the results of the test
are available. Whether the HIV test results are posi-
tive or negative the same ethical issues exist.
We have continued to ask the troubling questions
which Shelly’s case posed, because almost certainly the
problem will arise again. What should be our policy
regarding testing in prisons? For that matter, what
should our policy be for all drug abusers who are at
high risk for arrest and detention?
Although the immediate problems were resolved for
us, the larger issues remain. The law is ambiguous on
providing direction. Various state courts and the U.S.
Court of Appeals have heard suits from HIV-infected
inmates concerning issues such as the violation of their
rights to privacy and enforced segregation without con-
sideration of due process. In a review of these deci-
sions, Inciardi, McBride, Platt, and Baxter (1992)
concluded that until the matter is ruled upon by the
United States Supreme Court, procedures will continue
to vary from one jurisdiction to another.
Because of this, we do not feel that a simple, straight-
forward answer is available. Immediately, any out-
reach/HIV-testing research efforts targeting people
who are, or may be, incarcerated should examine care-
fully its informed consent, pretest, and posttest coun-
seling protocols to assure their relevance and efficacy
for this population. In the long run, the resources, cus-
toms and sensibilities of various communities are likely
to have some influence on the choice, development,
and implementation of any policy relative to the local
salience of AIDS. Minimally, of course, the rights and
well-being of the incarcerated people need to be as-
sured. These would include, but not be limited to, re-
ducing the risk of communicability of HIV, reducing
exposure of other prisoners to HIV-associated tuber-
Ethics and HIV Outreach
culosis, the issue involving incarcerated people’s abil-
ity to give informed consent, and the extent to which
HIV antibody screening and segregation, or isolation,
may constitute a violation of a prisoner’s civil rights.
Finally, the right of an individual to receive medical
and other care, once a determination of HIV seropos-
itivity or even a diagnosis of AIDS is made, may im-
pose requirements on a correctional system that it does
not have the resources to meet. Conversely, the right
of an inmate to refuse medical care, once seropositiv-
ity has been established, needs to be considered as well
(Inciardi et al., in press). The recent emphasis on com-
munity outreach and HIV testing among drug abus-
ers makes these issues extremely important.
Our case study illustrates that there is an urgent
need for the criminal justice systems to formulate HIV
infection and AIDS policies and procedures, especially
in low-to-moderate seroprevalence areas. Because the
needs and resources of each community are different,
we believe that it would be most useful at this time
for a community, using the issues framed above as a
starting point, to empanel a committee comprised of
substance abuse treatment professionals, physicians,
and public health specialists, civil rights advocates,
criminal justice personnel, ethicists, epidemiologists,
social scientists, and people with HIV/AIDS. Such a
group could then examine a community’s situation in
light of its problem and resources and formulate hu-
75
mane and effective policy. Given the continued spread
of HIV among IDUs and other high-risk drug abus-
ers and the accelerated criminal justice response to the
problem of substance abuse, such discussion is both
timely and appropriate.
REFERENCES
Carlson, R.G., & Siegal, H.A. (1991). The crack life: An ethno-
graphic overview of crack use and sexual behavior among Afri-
can-Americans in a Midwest metropolitan city. Jourm~l of
Psychoactive Drugs, 23, 1l-20.
Goffman, E. (1961). Asylums:Evsayson thesocialsituations of men-
talpatients and other inmater. Garden City, NY: Anchor Books.
Inciardi, J.A. (1989, Winter). Trading sex for crack among juve-
nile drug users: A research note. Contemporary Drug Problems,
16, 167-178.
Inciardi, J.A., McBride, D.C., Platt, J.J., 8r Baxter, S. (in press).
Injecting drug users, incarceration, and HIV: Some legal and
social service delivery issues. In B.S. Brown (Ed.), The National
AIDS Demonstration Research Program: Westport, CT: Green-
wood Press.
Reece, R., & Siegal, H.A. (1986). Studying people. Macon, GA:
Mercer University Press.
Rutchick, J. (1990, July 4). Senator demands probe of AIDS death
in jail. Dayton Daily News, p. 1.
Siegal, H.A. (1978). O@os~s of the forgotten. New Brunswick, NJ:
Transaction, Inc.
Siegal, H.A., Carlson, R.G., Falck, R., Forney, M.A., Wang, J.,
& Li, L. (1992). High risk behaviors for transmission of syphi-
lis and HIV among crack-cocaine using women: A case study
from the Midwest. Sexually Transmitted Diseases, 19,266271.