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Emerging future issues in HIV/AIDS social research

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This paper identifies important social research issues regarding the changing global epidemic so funding agencies, journal editors, social science communities, individual researchers and students, non-governmental organizations, community- based organizations, and the general public can debate them and, hopefully, act on them.
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EDITORIAL REVIEW
Emerging future issues in HIV/AIDS social research
Samuel R. Friedmana, Susan C. Kippaxb, Nancy Phaswana-Mafuyac,
Diana Rossid and Christy E. Newmanb
AIDS 2006, 20:959–965
Keywords: HIV, social sciences, research priorities, public policy, epidemics,
social change, social networks, unintended consequences, social impact
Introduction
HIV outbreaks parallel to those that followed the
disruption of the USSR or that seem to be resulting
Peter Piot (Executive Director of UNAIDS) challenged
from the increasing ‘globalization’ of India and China [5].
Bangkok International AIDS Conference attendees to
Global warming could produce large-scale population
think ahead 10 years or more so we will be prepared to
movements with similar results.
meet the challenges that will face us [1]. Over this next
decade, many formidable challenges are likely to stem
Our reflections here on social change and other possible
from the interactions of social, ecological, political, and
transformations have not produced a comprehensive or
economic change; existing social structures; the changing
complete list of social research priorities. We have
HIV epidemic, and changes produced by emerging
emphasized ‘macro’ and middle-level processes focusing
biomedicine and viral evolution. Although some
on social, economic, political and cultural factors that
challenges will be unpredictable, we should plan ahead
affect HIV spread and/or that influence responses to the
for those we are able to anticipate. This paper identifies
threat of HIV (rather than on small group or individual
important social research issues regarding the changing
level processes that focus on the psychological and
global epidemic so funding agencies, journal editors,
interpersonal) because we think these have received
social science communities, individual researchers and
relatively less attention than is needed. We recognize
students, non-governmental organizations, community-
that other researchers might produce different lists. We
based organizations, and the general public can debate
also recognize that it is important to foreground the
them and, hopefully, act on them.
probability that socio-epidemiologic contexts are likely to
continue to have great cross-national variation and that
Social change is likely to create complex problems for our
‘big events’ such as wars and transitions, perhaps in
response to HIV. Weiss and McMichael [2] demonstrate
interaction with religious revival movements, can rapidly
the acceleration of socially-driven epidemic outbreaks of
move countries into crisis conditions that pose the threat
infectious diseases in recent years. As Rischard has argued
of explosive HIV outbreaks. Such changes can occur in
[3,4], there is a high probability of massive political,
countries that currently appear politically and economi-
ecological and social changes over the next few years.
cally stable. (It is useful to remember that few analysts in
These threaten large-scale disruption of existing social
the early 1980s foresaw either the fall of the USSR or the
and risk networks, sexual (and injection) mixing patterns,
collapse of apartheid in South Africa). The HIV/AIDS
and sexual and injection behaviors that can impede or
epidemic is itself a ‘big event’ in localities with high
facilitate HIV transmission – and thus might generate
prevalence.
From the aNational Development and Research Institutes, Inc., New York, New York, USA, the bNational Centre in HIV Social
Research, The University of New South Wales, Sydney, New South Wales, Australia, the cSocial Aspects of HIV/AIDS and Health,
Human Sciences Research Council, Cape Town, South Africa, and the dIntercambios Civil Association, Buenos Aires, Argentina.
Correspondence to Samuel R. Friedman, NDRI, 71 West 23rd Street, New York, NY 10010, USA.
E-mail: friedman@ndri.org
Received: 1 September 2005; revised: 12 December 2005; accepted: 12 December 2005.
ISSN 0269-9370 Q 2006 Lippincott Williams & Wilkins
959
Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

960
AIDS 2006, Vol 20 No 7
While acknowledging the above, we propose six major
the size, centrality and microstructures of community
emerging social research issues or themes. These themes,
network components; and the extent of quasi-anon-
organized in terms of selected social and epidemiologic
ymous risk nodes such as group sex parties, bath-houses,
processes and situations (although noting that research on
and shooting galleries [5,10–16]. Social norms, regula-
each of these topics will have at least some relevance
tions, educational systems and law enforcement processes
everywhere), concern the following items.
affect sexual and drug-taking behaviors [17,18]. Social
networks, norms and social support shape how people
(A) Wars, transitions, ecological or economic disruptions.
access, interpret and use HIV-prevention information and
(B) Large-scale HIV epidemics, their related illness and
education, the extent to which people make use of
death, and their attendant social instability and social
sexually transmitted disease treatments and HIV therapies,
disruption.
HIV counseling and testing, and affect adherence to
(C) Government policies that ignore or defy available
therapies [19–21]. Economic and political conditions and
evidence.
dynamics affect what services are available and how
(D) Stable societies without generalized epidemics, which
inconvenient, costly, or stigmatizing it is to use them
face distinctive challenges.
[22–31]. Finally, events, including large-scale epidemics
(E) Emerging biomedicine and its attendant opportunities
themselves, that disrupt local or national social networks,
and (perhaps unintended) social consequences.
communities, services, or social norms, lead to large-scale
(F) Possible failure of previously effective therapies due
migration, or initiate large-scale mixing across new sexual
to viral evolution or disruptions in patterns of social
or injecting networks, create the potential for risk
organization.
behaviors or adherence failures that would have
previously been prevented – and these, in turn, might
Each of these six themes provokes a number of research
lead to epidemic outbreaks [e.g., 32].
questions. To answer these questions, the full armamen-
tarium of social science and social epidemiologic research
methods will be needed, including theory development;
hypothesis-testing and exploratory studies; ethno-
graphic, quantitative, historical, and comparative des-
Emerging research issues for different
igns; and intervention trials. In all of these approaches,
processes and situations
involving relevant community members, decision-
makers, and other actors as full collaborators or as
(A) Wars, transitions, ecological or
sources of guidance, inspiration or critique, can be in-
economic disruptions
valuable, including those based on participatory action
Aral [5], Hankins et al. [33], and Friedman and Reid [34]
research and on collaborative systematization of experi-
have argued that transitions – like those in the former
ences [6 – 8]. Research has documented the effectiveness
Soviet Union circa 1990, South Africa in the early 1990s,
of community responses to HIV – often in advance of
and Indonesia in the late 1990s – and wars can disrupt
public health interventions [9]. Working with commu-
risk networks and protective social norms and thus lead
nities means that interventions are informed by com-
to HIV outbreaks. However, such outbreaks are not
munity members and are thus more likely to be perceived
inevitable. Gisselquist [35] and Spiegel [36] show that
as appropriate and taken up.
many African wars have not increased HIV transmission,
and the case of the Philippines shows that transitions
However, throughout the epidemic, there has been a
need not lead to outbreaks either. Furthermore, United
relative lack both of researchers interested in topics like
States involvement in wars since the early 1990s seems not
those in these six themes and of funding to conduct such
yet to have accelerated HIV transmission there. Although
research. We close with thoughts about how to address
further research on whether wars or transitions are
these problems.
statistical risk factors for increases may be useful, we
suggest that the historical record is strong enough to
conclude that both wars and transitions can, on occasion,
lead to epidemic outbreaks of HIV – that is, under some
Social processes and HIV/AIDS
conditions, they increase social vulnerability to HIV
[37–39]. On the other hand, under other conditions,
Why should social factors affect HIV/AIDS epidemics?
outbreaks do not occur. This suggests that the following
The first reason is that HIV is transmitted through sexual
research questions should receive high priority.
and drug-injection networks, which are fundamentally
social phenomena. Social norms about appropriate
(1) To identify which pre-existing conditions (including
choice, numbers and timing of partners, and about
but not limited to gender relationships, sexual culture,
behaviors with those partners, shape crucial network
and patterns of psychoactive drug use) and social
variables such as concurrent sexual and injection
processes can lead to increased HIV vulnerability as a
partnerships; partner turnover rates; mixing patterns;
consequence of war, transitions, or, perhaps, of
Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

Emerging issues in HIV social research Friedman et al.
961
economic breakdown or of ecological change such as
contribute to high HIV transmission rates – and, most
global warming [40]. Such research should study how
important, to determine how to intervene in these.
these events: (a) shape norms, behaviors, practices, and
(2) To describe possible impacts of the epidemic in terms of
sexual, injection and care networks; and (b) affect
changes in social, sexual and drug-use networks, norms,
gender and racial/ethnic power relationships, religious
culture, gender relationships, community resilience,
belief systems, poverty, and other middle-level socio-
etc. – and to determine what actions by local and
cultural and political economic relationships that
outside agencies and by affected populations can
influence HIV transmission and the capacity for
mitigate further infections and social distress.
prevention and care.
(3) To consider how affected populations and agencies
(2) To consider how affected populations or outsiders might
might intervene or organize against individual, com-
intervene to avert or reduce epidemic outbreaks due to
munity and institutional stigma [52,53].
wars, transitions, or other events; and how such
(4) To determine how populations can be mobilized for risk
responses are shaped by pre-existing social identities,
reduction before mass illness or dying begin.
community resilience, patterns of social and political co-
(5) To establish how health systems can be organized for
operation, and indigenous leadership [41–43].
disease control and care in poor countries or under
conditions of disruptively high mortality. How can
In terms of research designs, much might be learned from
affected and unaffected populations assist in this? How
qualitative
and
quantitative
studies
that
compare
can these efforts be sustained in contexts of socially-
countries that did and did not have outbreaks subsequent
disruptive high morbidity and mortality?
to such events; that study localities that did not have
(6) To determine how to navigate the AIDS crisis so that
outbreaks within countries that did; and perhaps by rapid-
negative social consequences are minimized and positive
response research teams that work with local participants
social gains initiated or maintained. This question –
and researchers to study emerging prevention efforts,
monumental in scope – has been raised by Mary Crewe
network patterns, behaviors, pockets of emerging high-
and her colleagues [54], and requires both scholarly
risk practices, and medical services, together with HIV
input and popular action to resolve.
and sexually transmitted infection rates, during and after
wars and transitions.
(C) Government policies that ignore or defy
available evidence
Governments’ responses to HIV and other health-related
(B) Large-scale HIV epidemics, their related
issues, and how they are shaped by social structures,
illness and death, and their attendant social
competing priorities, and resource availability, are
instability and social disruption
important to study. We emphasize here one aspect of
Just as wars, transitions and other processes can disrupt
this issue that has been important in the HIV/AIDS
social norms and social, sexual and drug-use networks and
epidemic – government policies that ignore or defy
communities, HIV/AIDS epidemics large enough to
available evidence. Since HIV is transmitted by culturally
constitute socially-disruptive ‘big events’ can have similar
and religiously-sensitive and often, legally prohibited,
effects. The research questions that are raised under
behaviors, and since government health and policing
(A) are also important in these circumstances.
policies on sex, reproduction, and illicit drug use may
themselves contribute to HIV spread and/or to the failure
The exact definition of ‘large enough’ probably depends
to treat HIV, it is unsurprising that governments
on the rate of spread of HIV over time and also on its
sometimes do not implement programs that research
socio-economic distribution – and research on how
has determined to be effective. United States policies on
much disruption results from different prevalences and
syringe exchange, sex education in schools, programs for
distributions of the virus might be useful. Research is also
sex workers, and intellectual property rights are examples
needed on how to minimize the destruction and
of this [18,55–57], as are the failure of many governments
maximize the constructive outcomes of social crises that
to introduce large-scale methadone programs for opiate
the epidemic produces.
users [27] and South Africa’s failure for many years to
accept that HIV was the proximate cause of the epidemic
Given the extent of HIV in many African countries, and
[58].
its potential spread in Asia, the emerging social research
issues for this context are clearly important [see, for
Despite this widespread pattern, there has been too little
example, 44–51]. These may include the following items.
research on the following issues.
(1) To identify and describe mid-level social forces (such as
(1) Why governments ignore and/or flout scientific findings.
gender or racial/ethnic power relationships, religious
(2) Effective ways in which internal and external forces can
conditions and beliefs, community resilience, and
act to change these policies. These are likely to vary
poverty) that create, sustain or reduce high-risk sexual
depending on the reasons why each government acts this
or injection network patterns or behaviors that
way and on economic, political and other contexts that
Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

962
AIDS 2006, Vol 20 No 7
affect governmental decision-making, including how
affect behavioral prevention measures and political and
mass media shape public agendas around HIV/AIDS [59].
economic support for prevention programs. This is
especially important for middle to low efficacy
(D) Stable societies without generalized
prevention technologies [66–68].
epidemics
(3) To consider social and cultural impacts of anti-HIV
A number of research issues exist for these societies [60,61].
circumcision programs [69–74]. Although recent find-
Importantly, although countries such as the Netherlands,
ings indicate that circumcision lowers the likelihood of
Brazil or Saudi Arabia can currently be classified as stable
HIV infection [69], there is concern that circumcised men
and without generalized HIVepidemics, HIV could spread
who view themselves as ‘protected’ might engage in more
rapidly under social crises such as those Rischard [3,4]
unsafe sex. Adult circumcision might also carry risks,
identified, or, indeed, under conditions such as those
especially if performed by inadequately trained medical
discussed in the previous section. Furthermore, countries
personnel or traditional healers. Furthermore, since
with a stable and comparatively small HIV prevalence may
circumcision is deeply rooted in religious systems and
believe that the HIV ‘problem’ has been solved. Thus, to
in some countries, such as India, is a mark of racial/ethnic
better manage current issues and to avert possible future
difference, circumcision programs potentially could
disasters, research is needed on the following topics.
discredit or weaken HIV prevention and care efforts.
(4) To identify socio-cultural, organizational, and political
(1) How to sustain and strengthen cultures that support and
economic barriers which impede vaccination among
care for the sick and that reduce risk behavior and
‘general’ and/or oppressed or marginalized populations
stigmatization over long periods of time; and how to
[75 –77].
maintain socio-behavioral conditions that limit HIV
spread and the rate at which viral mutation reduces the
(F) Possible future widespread failure of
therapeutic efficacy of medications [9,62].
previously-effective therapies due to viral
(2) How to develop cultures of risk-reduction and care in
evolution or social disorganization
countries or localities where stigma is widespread against
Although none of us like to think about it, the race
marginalized groups and/or people infected with HIV
between our ability to devise new medications and
[63].
the evolutionary mutability of HIV could quite possibly
(3) How to mobilize at-risk populations that have not yet
be lost. This could happen because of possible limits to the
created effective cultures of risk reduction and caring.
menu of therapies, the loss of economic or other capacity
(4) Potential sources of local or national HIV epidemic
to develop new therapies (perhaps due to ecologically-
outbreaks. We suggest that the following questions should
generated socio-economic dislocations or a worldwide
be prioritized since they have received less attention than
depression), or socio-cultural disruption due to wars or
increases in risk behavior: what social and economic
widespread assumption of power by religious funda-
processes shape sexual and injection networks in a
mentalisms [78,79]. These circumstances could result in
locality? As economic development projects can disperse
considerable increases in morbidity and mortality in
and diffuse networks and communities with high HIV
regions of the world where therapy has been accessible
prevalence into localities with low infection rates, and
to the infected, and could also arouse blaming
since the normative impacts of such relocations can lead
and stigmatization of the sick. Social research might
to high-risk behaviors, practices, and networks [11,14],
find solutions to these potential problems before they
what prevention approaches can either prevent these
arise. We suggest that the following issues should be
dislocations or mitigate their effects?
addressed.
(E) Emerging biomedicine
(1) How to minimize traumatic despair (under different
Medical advances can generate urgent needs for social
conditions of community resilience and leadership) if
research. Such needs can include finding ways to imple-
therapeutic failure leads to resumed mass morbidity and
ment new medical possibilities but also ways to cope with
mortality among the infected.
any (often unintended) negative social consequences of
(2) How to maintain or regenerate risk reduction under
new discoveries; for example, the impact of antiretroviral
these conditions.
therapy on risk-reduction among gay men in some
(3) How to prevent political blaming and restriction of
countries [64]. Although it is impossible to forecast
medications under these conditions.
biomedical progress, the following issues should become
foci of increased research effort.
(1) To investigate impacts of introduction of new treatments
Obstacles to conducting such research
and concomitant increases in HIV-testing on stigma and
discrimination [65].
Throughout the epidemic, research funding has been
(2) To determine how medical technologies such as
scarce, as have researchers to conduct such research, and
vaccines, microbicides or pre-exposure prophylaxis
high-status journals willing to publish it.
Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

Emerging issues in HIV social research Friedman et al.
963
In part, this results from long-standing differences between
epidemiology, urban health, or questions of prevention or
scientific disciplines [80]. Few laboratory scientists have
care for infectious diseases.
training in social scientific theory or methodologies or in
social or behavioral epidemiology. Epidemiologists are
Thus, these issues receive little research funding; and
more likely to be familiar with social-psychologically
social scientists who study them risk both failing to obtain
oriented behavioral theories, and to have been trained in
funding and stigmatization within their professions
epidemiologic approaches that treat the individual as the
[84,85].
unit of analysis and theorization. However, such training
provides little basis for understanding or evaluating social
We have no magic solution. What we do suggest is that
research at higher levels of analysis or using theoretical
the institutions of HIV research, including funders,
frameworks that incorporate central concepts such as
journals, and academic institutions, acknowledge the
history, power, and culture. Furthermore, such research
seriousness of the problem. The mutual causal inter-
can appear to the untrained to have controversial political
actions between social, political and economic processes
implications and thus to be ‘unscientific’ regardless of
and the ever-changing HIV/AIDS epidemic that are
whether it is based on scientifically valid methods.
discussed in this review are extremely important. They
Questions of what counts as ‘appropriate’ methods
could determine the fates of millions of people and
profoundly shape what we know, which affects what
perhaps even the socio-cultural survival of some nations
social researchers can do and publish in public health [81].
or ethnic groups. We propose that serious discussions be
initiated among those funders, journal editors, and social
Sociologists, anthropologists, political scientists, and
researchers who have engaged with these issues to
economists often lack training in natural sciences. In
establish strategies for incorporating social researchers
many countries, these disciplines emphasize research that
within the decision-making structures of the field, and to
develops the social sciences in their own terms – and thus
identify ways that relevant research results can influence
social scientists risk rejection (and reduced career
decisions by policy-makers, non-government and com-
opportunities) if they engage in applied research rather
munity-based organizations, and affected populations.
than research on higher-status questions [82].
What do these disjunctures of expertise and interest lead
Conclusions
to? Biomedical research funding for HIV, whether
provided by governments or pharmaceutical companies,
A number of macro-level and mid-level social factors
has overwhelmingly concentrated on basic science,
shape HIV transmission and care by affecting risk
clinical research, and epidemiology using the individual
networks, behaviors, and the degree and sequelae of
as the unit of analysis, and prevention research focusing
sexually transmitted infections and HIV treatment and
on behaviors of individuals [83]. Review committees for
care. Social processes such as wars and transitions, as well
major funding agencies such as the US National Institutes
as the interactions among emerging biomedicine, rates of
of Health are almost always comprised of researchers in
disease outcomes, viral evolution, and the social reactions
these specialties. The few social scientists on these
to these, need to be studied so we can anticipate and
committees have usually spent their careers conducting
reduce the devastation that AIDS creates. The relative
research on behavior change or HIV risk factors at the
lack of this kind of research has weakened the response –
level of the individual, and thus have difficulty judging
both individual and societal – to the epidemic.
proposals on the topics discussed in this article. Editors
and reviewers for the major journals in the field,
Undoubtedly, the issues discussed in this paper do not
including this one, have similar strengths and weaknesses.
include all of the important social research issues that need
to be addressed. Much important research is occurring at
Social science funding agencies (which typically disburse
the small-group and individual levels of analysis. Other
much less money) tend to fund research on the ‘core
important social research issues will emerge that cannot as
problems’ of their disciplines (such as social stratification,
yet be specified. To the extent that funders and editors
cultural dynamics, family and interpersonal structures and
encourage social research, and so draw talented social
dynamics, social cohesion, or deviance), rather than
researchers to the field, we will be more likely to identify
applied problems which may be of lower status within the
these issues and conduct the necessary research in time to
discipline and, arguably, more appropriate for funding by
maximize benefits and minimize harms.
(socially-educated) biomedical agencies. Even such sub-
fields as medical sociology and medical anthropology
focus on topics such as cultural definitions and beliefs
Acknowledgements
about illness and health; differences in morbidity and
mortality by stress level, socio-economic status, gender,
The authors wish to acknowledge advice from Hannah
or race/ethnicity; and the formal organization and
Cooper, Karl Peltzer, Gerry Stimson, Ida Susser, and
financing of medical services – rather than on social
anonymous reviewers.
Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

964
AIDS 2006, Vol 20 No 7
Sponsorship: The authors would like to acknowledge
16. Friedman SR, Neaigus A, Sandoval M, Mateu-Gelabert P, Flom
support from a number of sources. S.R.F. was supported
PL, Kottiri BJ, et al. What risk networks and social networks can
contribute to understanding and preventing the potential
by National Institute on Drug Abuse projects R01
spread of HIV. 2001 Global Research Network Meeting on
DA13336 (Community Vulnerability and Response to
HIV Prevention in Drug-Using Populations [Fourth Annual Meet-
IDU-Related HIV), R01 DA13128 (Networks, Norms,
ing Report]. Melbourne, Australia, 2002.
and HIV/STI Risk among Youth) and its supplement
17. Friedman S, Cooper H, Tempalski B, Keem M, Friedman R, Flom
(Networks, norms & risk in Argentina’s social turmoil),
P, et al. Relationships of deterrence and law enforcement to
drug-related harms among drug injectors in U.S. metropolitan
and P30 DA11041 (Center for Drug Use and HIV
areas. AIDS 2006; 20:93–99.
Research). S.C.K. and C.E.N. were supported by the
18. Wodak A, Cooney A. Effectiveness of sterile needle and syringe
Commonwealth Department of Health and Ageing,
programming in reducing HIV/AIDS among injecting drug
Australia. N.P.-M. was supported by the Human
users. Geneva: World Health Organisation; 2004.
19. Dobkin JF. New York: Antiretroviral treatment for multipro-
Sciences Research Council, Social Aspects of HIV/
blem patients. In: Breaking down barriers. Lessons on providing
AIDS and Health. D.R. was supported by National
HIV treatment to injection drug users. New York: Open Society
Institute on Drug Abuse project R01 DA13128S
Institute; 2004. 60–65.
(Networks, norms & risk in Argentina’s social turmoil).
20. Mesquita F. Brazil: Giving injecting drug users access to highly
active antiretroviral therapy as a response to the HIV/AIDS
Additional support was provided by Fogarty Inter-
epidemic. In: Breaking down barriers. Lessons on providing HIV
national
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project
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treatment to injection drug users. New York: Open Society
TW001037-06 (Mount Sinai New York State Argentina
Institute; 2004, 17–24.
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21. Moscatello G, Campello P, Benetucci JA. Bloodborne and
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Buenos Aires, Argentina. Clin Infect Dis 2003; 37:343–347.
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Document Outline

  • Emerging future issues in HIV/AIDS social research
    • Introduction
    • Social processes and HIV/AIDS
    • Emerging research issues for different processes and’situations
      • (A) Wars, transitions, ecological or economic’disruptions
      • (B) Large-scale HIV epidemics, their related illness and death, and their attendant social instability and social’disruption
      • (C) Government policies that ignore or defy „available’evidence
      • (D) Stable societies without generalized „epidemics
      • (E) Emerging’biomedicine
      • (F) Possible future widespread failure of previously-effective therapies due to viral evolution or social’disorganization
    • Obstacles to conducting such’research
    • Conclusions
    • Acknowledgements

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