Ethical dilemmas in professional practice in anthropology

Policy - environment - development

Worked example 1: HIV/AIDS in Lothian

Multi-disciplinary perspectives

This page summarises the perspectives of key players and the potential range of roles a social scientist could adopt.

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Epidemiologists' perspective

1.  Epidemiologists try to find out the prevalence of HIV disease and to forecast future trends in AIDS cases. In the case of HIV/AIDS a variety of techniques is used with certain populations which indicates the percentage infected in those populations. Thus epidemiologists undertake anonymous testing of:

1. pregnant women
2. newborn babies
3. those who attend genito-urinary medicine (GUM) clinics
4. drug users
5. prisoners.

In the case of drug users and prisoners, a volunteer bias may creep in because participation is voluntary. However, in GUM clinics, the blood samples taken for syphilis testing are used.

2.  Regional distribution of the epidemic has to be charted as infection rates vary across geographical regions. For example, half of Scotland's HIV population are in Lothian. In order to forecast trends, epidemiologists have to obtain quantitative data of life style behaviour such as patterns of drug taking and types of sexual behaviour. To ensure the cooperation of respondents the researchers have to allay any anxiety that the data collected will be used in a punitive way against them.

3.  The changing nature of the epidemic indicates that sexual intercourse (heterosexual, homosexual and bisexual) and not intravenous drug taking is the main route of infection. Age, gender and ethnicity are important variables which affect the general picture. For instance, the disease progression rate of older people is quicker than among younger people. Homosexual men are at greater risk of new infection than heterosexual men and women. The genetic make-up of individuals appears, although it is not certain, to affect both the rate of progression to AIDS and their susceptibility to infection.

4.  As result of central and local government funding policy, various changes have had implications for the prevention of HIV/AIDS and the management of care of the newly infected and affected.

5.  More optimistic predictions are now available on survival, morbidity and mortality due to clinical developments by the pharmaceutical industry. The development of new drugs slows down the rate of progression to death. Furthermore, the wider use of combination therapies is likely to lead to a reduction in in-patient and day care treatment and a correspondingly higher demand for primary care and community support. There is a range of care options available nowadays. The hospice movement has spawned a growth in institutions to care for the infected, and support services have developed for home care.

6.  Epidemiological forecasts and predictions have to be continually updated as there are constant changes in the mechanism of infection and transmission of HIV to AIDS.

Local Authorities' perspective

Local authorities in Scotland have been affected by a number of major changes. These include:

1.  The policy of ringfencing of funds for HIV/AIDS which occurred when it was perceived as an 'emergency' has changed, resulting in different funding formulae. Local authorities have become 'purchasers' of services provided by both private and public agencies. Nationally, discussions continue with the Department of Health and the NHS on possible changes to the resource allocation formulae. Statutory provision has declined and local authorities have to look for private funding.

2.  Due to local authority restructuring, for example in Scotland, new smaller councils have been created and each has different priorities. This makes planning difficult.

3.  HIV/AIDS has to compete with other areas of work undertaken by the local authorities.

4.  There has been a move towards increased community care often provided by the voluntary sector. The local authority is therefore responsible for ensuring that a large number of providers keep to their contracts and work to adequate quality standards.

5.  The political climate nationally and locally has changed and HIV/AIDS is no longer a big issue. Pressure groups, often driven by conflicting political ideologies, generate part of the political climate in attempts to influence the policy and practice of local authorities.

6.  Conflicting information has emerged from scientists, community groups etc. which influence political and public opinion.

7.  HIV has not been eradicated, and in conditions of poverty, it will continue to spread.

8.  It is critical that future planning and developments are assisted by comprehensive information and projections based on sound research and evaluation of the council's current strategies and services. These need to be matched against individual and community needs, agreed priorities and available resources, and knowledge of HJV trends in particular areas such as Lothian. A closer partnership with planners/researchers is needed, as is consultation with the users of our services.

Social workers' perspective

1.  Many people with HIV/AIDS are wary of social services. These fears originate from the duty social workers have to protect children and consider taking them into care if parents are found to be 'high' on drugs, leave syringes lying around and generally are unable to look after their child.

2.  One extremely sensitive and difficult area is talking to parents about making further care plans for their children which will come into effect when they are very ill, or on their death. Social workers have to tackle these issues and work at the client's pace.

3.  People with HIV/AIDS may not take medication in the prescribed way because it is a constant reminder of their illness or because they are disorganised, for instance, due to drug taking.

4.  Social workers talk to both patients and carers, the latter category comprises partners, grandparents and children.

Social scientists perspective

1.  How is 'need' defined? It is a social construct - not a natural entity.  Some of the questions we could ask are:

• What are the different perceptions of 'need'?
• Where, how and by whom are these perceptions articulated? With what effect?
• Whose opinions and perspectives are heard? What opinions are not heard?

2.  Various strategies of inquiry into needs can be undertaken including:

• Literature: what is being said about 'needs' in the official language of service organisations?
• Individual interviews: chart a range of views and their contexts.
• Group interviews: to understand the dynamics of negotiating and contesting opinions.

3.  Social scientists must be aware how research findings can be interpreted and used by various stakeholders and funders of research.

4.  Social scientists have to define their expertise and the limits and potentials of methods employed. The epistemological and political implications of these will be judged differently by various parties, some without roots in a social science research culture.

5.  To be effective, it is necessary not only to know and understand people's needs but also to understand the organisational context in which 'needs' are constructed and negotiated, the personalities involved and the national and local political sentiments.

6.  Social scientists have to establish their identity and role. Research in an applied field usually involves working in a highly politicised field. Some roles social scientists adopt are:

• advocate: supporting the goals of community groups and individuals
• broker: acting as a communicator between two culturally different groups -
• needs assessor: identifying needs to determine what services should be provided
• impact assessor: identifying the effects of various actions
• policy researcher: undertaking research to support policy development
• evaluator: determining whether a social programme has met its goals.