Jeanelle de Gruchy, BA, MBChB, MA, and Simon Lewin, BSc, MBChB, MSc
ABSTRACT
Prevailing state and institutional ide-
ologies regarding race/ethnicity, gender,
and sexuality help to shape, and are in-
fluenced by, research priorities. Research
ethics committees perform a gatekeeper
role in this process.
In this commentary, we describe ef-
forts to obtain approval from the ethics
committee of a large medical institution
for research into the treatment of homo-
sexual persons by health professionals
in the South African military during the
apartheid era. The committee questioned
the “scientific validity” of the study,
viewing it as having a “political” rather
than a “scientific” purpose. They ob-
jected to the framing of the research topic
within a human rights discourse and ap-
peared to be concerned that the research
might lead to action against health pro-
fessionals who committed human rights
abuses against lesbians and gay men dur-
ing apartheid.
The process illustrates the ways in
which heterosexism, and concerns to
protect the practice of health profes-
sionals from scrutiny, may influence the
decisions of ethics committees. Ethics
that exclude research on lesbian and gay
health cannot be in the public interest.
Ethics committees must be challenged
to examine the ways in which institu-
tionalized ideologies influence their de-
cision making. (Am J Public Health.
2001;91:865–868)
June 2001, Vol. 91, No. 6 American Journal of Public Health 865
Jeanelle de Gruchy is with the Health and Human
Rights Project, University of Cape Town and the
Trauma Centre for the Victims of Violence and Tor-
ture, Cape Town, South Africa. Simon Lewin is with
the Health Systems Research Unit, Medical Research
Council of South Africa, Cape Town, South Africa.
Requests for reprints should be sent to Jeanelle
de Gruchy, BA, MBChB, MA, Southern Derbyshire
Health Authority, Derwent Court, Stuart St, Derby, DE1
2FZ, UK (e-mail: jeanelle.degruchy@ntlworld.com).
This commentary was accepted February 6,
2001.
Note. The views expressed are the responsibil-
ity of the authors.
Central to South Africa’s democratic trans-
formation have been attempts to understand
how and why apartheid human rights abuses
occurred. The Truth and Reconciliation Com-
mission was established to document gross
human rights abuses during apartheid, to con-
sider amnesty for those accused of such abuses,
and to propose reparations for the victims. The
Truth and Reconciliation Commission health
sector hearings detailed how apartheid ideology
“permeated the entire health sector, distorting
and corrupting health professional training, re-
search and service delivery,”1(p976) resulting in
large-scale human rights violations.2,3 Health
professional institutions, including research or-
ganizations, not only failed to address institu-
tionalized racism, sexism, and heterosexism
within health provision but also actively per-
petuated a myth of “scientific objectivity” and
political “neutrality” that served to bolster this
profoundly unjust system.4
In South Africa, the close relations be-
tween racist ideologies and health research have
begun to be documented.2,3,5,6 Prevailing state
and institutional ideologies regarding race/eth-
nicity, gender, sexuality, and so on help to
shape, and are in turn influenced by, research
priorities.7,8 King9(p32) noted that in the United
States, “The systemic exclusion of minority
populations from biomedical and socio-
behavioural research . . . represents a form of
institutional racism.” Lesbians and gay men
are a minority group who often have also been
excluded from health and other research. In-
deed, Chauncey et al.10(p1) have commented that
research on the history of homosexuality “has
been constrained by the intolerance of gov-
ernments and academics alike. . . . Repression
and marginalization have often been the lot of
historians of homosexuality as well as of ho-
mosexuals themselves.” Attempts to censor re-
search on gay and lesbian issues are a form of
institutional heterosexism—a systematic cast-
ing of homosexuality as inferior to heterosex-
uality rather than discrimination at an individ-
ual level.11,12
Research on gay and lesbian health can
be viewed as socially sensitive research be-
cause of the potential social consequences for
the participants, the class of individuals repre-
sented in the research, or both.13 Such research
often highlights the complex ideologic and eth-
ical issues underlying the research enterprise.
In this commentary, we describe our difficul-
ties in obtaining research ethics committee (or
institutional review board) approval for research
into human rights abuses of gay men and les-
bians in the South African Defence Force by
health professionals during the apartheid era.
We use this case study to raise concerns that in-
stitutional heterosexism and a reluctance to ex-
plore professional abuses of power continue to
shape health research in South Africa.
Ethical Issues in Health
Research
Since the research-related atrocities of the
Nazi regime, there has been increasing aware-
ness of the need to consider ethical issues in
research. This has been formalized through the
promulgation of government regulations, the
development of professional guidelines for con-
ducting research, and the growth of research
ethics committees. These committees perform
a vital gatekeeper role in assessing the ethics of
research proposals and approving only those
that meet the standards laid down in the Dec-
laration of Helsinki.14 Ethics committees also
“have a wider responsibility to promote the
public interest by helping to ensure that relevant
research is done”15(p1390)—and, by extension,
determining which research does not serve the
public interest and therefore should not be
done. However, the converse also needs to be
considered: to what extent ethics committees
may act against the public interest by prevent-
ing or retarding research on ideologic grounds.
A literature search of MEDLINE and the
International Bibliography of the Social Sci-
ences found surprisingly few articles on the
conduct of research ethics committees. A few
studies suggested that ethics committees are
“wary of [socially sensitive] research and ap-
pear to resolve the dilemma posed by [it] by
Ethics That Exclude: The Role of Ethics
Committees in Lesbian and Gay Health
Research in South Africa
