Hello Everyone,

Respected Usha Rai, Swapna Majumdar, and Rimjhim Jain have wisely given some guidelines for the Media, while reporting about the people living with HIV/AIDS. I'm fully agree with Dr. Avnish Jolly (Chandigarh) that there must be guidelines for the e-papers also, as these papers often consider themselves out of the jurisdiction of the geographical limits or the purview of any constitutional law a single country. In this regard, I want to request the pioneers of India in this regard Ms. Usha Roy, Swapna Majumdar, Rimjhim Jain, Dr. Mohamed Rafique, Dr. Avnish Jolly, that these guidelines must be presented in the regional languages i.e. Punjabi, Oriya, Tamil, Telugu etc. including Hindi also. Only then we'll be able to get our media actually awakened about the reporting of HIV/AIDS.

Here, we are presenting some important guidelines for the media from the book 'HIV In News - Journalists As Catalysts' written by Ms. Usha Roy, Swapna Majumdar & Rimjhim Jain. The following Ethics of Reporting on HIV/AIDS have been written by Dr. Jaya Lakshmi Shreedhar, Technical Health Advisor, Internews Network.

THE ETHICS OF REPORTING ON HIV/AIDS

Good coverage of HIV/AIDS is about quality coverage of science, numbers and politics. Reporters essentially discuss one or another of these basics as we present the epidemic to the public through a lens of our choice such as human rights and law, medicine, policy and programme, gender, income, equity, geography or security or even when we prefer to skim the surface once in a while, through a sketchy coverage of functions and announcements. The starting point, however, is empathy for those infected and affected. Then, it is important to know the scientific fundamentals, medical definitions and concepts of the epidemic so that we are equipped to examine, critique or reject them as we interpret the epidemic.

A useful way to be comfortable with medical definitions and concepts is to surf reliable websites such as those run by UNAIDS, World Health Organisation or Centre for Disease Control, and discuss them often with qualified medical personnel. It is important to discuss the definitions in simple everyday language that we consider appropriate for readers and check them with experts to ensure that accuracy is not sacrificed.

As the HIV/AIDS epidemics continue to manifest, they throw up new issues, complicate or negate concepts that we took for granted and often make us rethink our views of society, culture and values. In short, we often find ourselves on a steep learning curve, despite experience in covering the issue for years. Regular updating on global, regional and local developments, keeping abreast of new research and fresh happenings from the field and extensive reading helps insure that we stay in step with HIV/AIDS as it charts its course. All too often, such reading is left to the science/health reporter, if, indeed, a media house has the luxury of that exclusive position. HIV/AIDS leaves few domains untouched, however, and it is reporters specialising in business, economics, foreign affairs, human rights/law or plain politics who can help raise the quality of analysis and interpretation of the epidemic. The complex nature of the HIV/AIDS epidemic deserves greater and deeper scrutiny. Subscriptions to reputed journals and publications from specialist organisations working in HIV, TB, reproductive health, sexuality and drug use are a standard way to remain abreast of new developments. Many of these publications are mailed free to the media on request. List-serves that deal specifically with HIV/AIDS are another way to follow the latest trends in thinking, the local reactions and controversies in the field and other media coverage on HIV/AIDS. Some useful list-serves include SAATHI (Solidarity and Action Against the HIV epidemic in India) and AIDS-INDIA. To guard the mailbox against a deluge of e-exchanges on these list-serves, it may be helpful to assign an exclusive hotmail or yahoo account to the list-serve which could be accessed on a regular basis.

After all, HIV/AIDS stories are about people. The task of writing on people living with HIV or their near ones, or on people who seem to be disproportionately infected or vulnerable sometimes appears like negotiating an ethical minefield. Many of the booby traps have to do with expression :

1. Language and prejudice: All handbooks on HIV/AIDS reporting usually carry a list of ‘offensive’ terms that are commonly used in HIV/AIDS reporting with a parallel list of politically correct or sensitive alternatives that we could substitute. Some common ones which have now been popularised by the media and figure in drawing room conversations include sex worker (rather than prostitute), injecting drug user (rather than drug addict) and multiple partner sex (rather than promiscuous). Its not that the original terms were inaccurate, it’s that they come loaded with the baggage of derogatory usage. Several other terms may need similar alteration so that they are reinvested with a new respectability in the age of HIV/AIDS. See how many you can think of.

2. Language and accuracy: A second set of terms that are commonly used are inaccurate because they fail to capture adequately the reality. Some common ones include AIDS patient for a person infected with HIV but still healthy. Such people prefer to be addressed as People Living With HIV, a term emphasising life and hope, rather than death and sickness which are inappropriate and misleading for their condition. High risk groups for people who manifest high risk behaviour is another misnomer that fails to take into account the dynamic nature of human behaviour. The term ‘vulnerable populations’ seems more appropriate. Another misnomer is the label homosexual to any person who has sex with someone of his /her own sex. While the term may be entirely accurate in some cases, the reality in India is broader and more varied. Some men and women manifest homosexual behaviour some times and heterosexual behaviour at other times and still may not comfortably fit the ‘bisexual’ label as these behaviours are not always a matter of their choice or natural inclination. Many men who prefer to have sex with other men may be married and have children due to social pressures. Such men nevertheless manage to have sex occasionally with men, in secret. Other shades of homosexual behaviour include men who prefer to cross dress and have sex with men, trans-sexuals who appear masculine and later play up their innate feminine desires and qualities and men who choose to carry that to the extreme step of castration. The term that seems flexible and accurate enough to capture these many shades of behavior is men who have sex with men (MSM). We may yet come up with new terms for those manifesting uniquely trans-sexual behaviour. Similarly, not all women who sell sex do so regularly, like sex workers. A flexible term to describe women who sell sex whether regularly or occasionally is Women in Prostitution (WIP). It seems like the term ‘prostitution’ is gaining acceptability as we get more comfortable with it and the word is not ‘dirty’ anymore. This may also have to do with the vocal and increasingly visible activism of sex-workers who are today organised and have begun to lobby for a legitimate space in society. Scan the common terms used when reporting on AIDS and check them for accuracy. It is also useful to speak with human rights specialists, sexologists and linguistic experts to gain useful pointers to sharpen the accuracy of the terms we use.

3. Language and metaphor: Metaphors are dangerous by definition as they reflect personal perceptions and distortions. Among the common metaphors in use when referring to the HIV epidemic are plague and scourge. The first refers to another disease entirely and reflects inaccurate usage. It also throws the mind back to the images of helplessness, ignorance and despair of the dark ages, imagery that seems dangerously inappropriate in the age of condoms, anti-retroviral treatment and infection control. Scourge reeks of retribution, again dangerously unsuitable in these times when health is being increasingly viewed through the framework of human rights. We also need to be on the alert about the reverse usage of disease as a metaphor. The metaphorical use of medical terms starting with virus, disease, cancer, malignancy, AIDS, pox and diarrhoea, are well worn and continue to tempt the reporter. How justified are we in referring to corruption as the incurable cancer of society, in an age when our understanding of cancer has undergone a sea change and it is no more that monster that eats us inexorably from within? Likewise, can we truthfully refer to HIV/AIDS as a killer or an angel of death, when medicine has already found the tools to make it a chronic manageable disorder, similar to, although vitally different from diabetes or hypertension?

4. Language and translation: The reporters who work in the local language has a tremendous advantage when it comes to finding a language and set of words to describe our experience with HIV/AIDS. Not for them the need to unlearn the loaded inaccuracies that have peppered coverage of HIV/AIDS over the last 20 years. Working with NGOs, high quality medical information straight from reliable sources and learning to follow the intricacies of the human rights discourse around AIDS can help them embark on a journey of explanatory journalism rather than a style that seeks to impress with its evocative terminology or pre determined views, a weak and distorted translation of English coverage. There exists in India rich vocabulary on sexuality, illness, home based care, support, responsibility and acceptance. It is up to the local language reporters to uncover the terms in common use and check their appropriateness for HIV/AIDS reporting, relying on explanatory writing as much as possible to ensure that the reader is not misled.

ETHICS CHECKLIST: Here is a beginning of a list of questions concerning ethics, to ask ourselves as we work on covering HIV/AIDS. The list is by no means rigid or complete and we could modify and add/delete as we deem appropriate. While all the questions are relevant, we could begin applying those we need or feel convinced about, depending on the time available and the nature of the report we work on. Over time, the consistent application of these ethical filters would become second nature and would automatically influence the way we conceive of, research and construct the reports. These have been numbered in more or less logical progression.

1. Have I thought about what might be the need for, or goal of my report?

2. Are there specific confidentiality related guidelines/media related policies that exist in the organisations I approach for information/interviews? Or are there HIV/AIDS related media policies available with journalists associations?

3. Have I ensured that my report presents a set of perspectives that are distinct and help construct a comprehensive picture? Have I given space to views that I don’t personally subscribe to?

4. Have I thought about what could be the impact of my report in the near and distant future, on the people I have quoted or covered, on the situations I have described and the conclusions drawn?

5. Who might my report affect and why? Would that be a legitimately desirable impact?

6. What if the roles were reversed and I was not the reporter but the person/organisation covered. How would I feel and what consequences might I face from family, friends, community and at workplace?

7. What strategies might I employ to ensure that the report is accurate and effective at the same time as well as sensitive and minimally destructive or hurtful?

8. Is my approach, reasoning and discussion clearly based on evidence and thorough research? Would it be justifiable in the face of rigorous scrutiny by people living with HIV and stakeholders such as those working in prevention, care or related issues?

When it comes to HIV/AIDS, as in any health reporting, there’s no getting away from numbers. Reporters catch the figures flu every year when NACO and UNAIDS release their national estimates on HIV prevalence. The result is a flurry of reportage mostly of the paralysis-by-analysis variety which blows over following well meaning calls from activists and officials entreating us not to ‘waste news space on numbers, but to learn to see beyond them.’

Reporters are addicted to numbers whether we understand them or not, the larger the figures, the better. Numbers serve as a tempting opening to any reporting on HIV/AIDS, irrespective of the angle the story explores. Reporters constantly demand to know the ‘true numbers’ about HIV/AIDS from UN agencies, NGO and others, not realising that only a door to door community prevalence survey that tests every man, woman and child can ever yield the ‘truth’. The unique nature of the HIV epidemic, the size of the populations and certainly human rights considerations tell us that such a survey is neither possible nor warranted. We have little choice but to work with estimates that at best offer only an informed guess about the ‘truth’ and at worst mislead us to jump to the wrong conclusions. This is perhaps one of the best contexts that illustrates the fundamental uncertainties of epidemology in particular and scientific research in general. We need to get used to asking questions and conveying the tentative quality of what we uncover rather than be obsessed with closing the minds of our readers into a culde- sac of dead certainty. The insensitive use of metaphors and labels distorts the picture. It gives a false impression when we interpret the numbers with colourful metaphors such as ‘scourge’.

Ethics demands that we analyse, not simply repeat, the estimates and projections made by local and international agencies. This is important to explain to readers the methods used to arrive at the projections, so that their capacity to respond intelligently to these numbers is enhanced. In short, ethics demands that we convey to readers exactly what these numbers represent and what they do not. Numbers add shock value and a newsy quality to reports and if presented convincingly and repeated often enough, add a ring of authenticity, deserved or not. One of my favourite stories refers to the ‘annual increase in the trafficking of young girls from Nepal to India.’ The oft repeated numbers signifying the ‘annual increase’ vary widely between 5 to 20,000, sometimes more, but at some point simple math intervenes to remind us that these numbers may mean nothing. Nepal would probably have no young girls left, at this rate. A useful question is to ask if a reliable baseline estimate exists in the first place. A skillful use of numbers ultimately constitutes the substance of quality news and analysis, provided the numbers reflect novelty, proportion, time, context and above all, the human face.

Below is a small list of reminders that help better the quality of commentary on numbers. We could add to this list as our experience grows. The general goal is to strive for a degree of comprehensiveness, no matter how little space we get.

??To help present a fuller picture to readers we could avoid using numbers unnecessarily.

??Explain why we are providing a particular statistic on what that figure means, in simple, accurate language.

??Compare that figure usefully to some other numbers so that the reader can make a reasonable/near realistic inference about proportion, criticality and logic.

??Place statistics on a time scale so that the reader can follow a development over time.

??Indicate what a number means to policy or the public giving concrete examples.

Almost all stories on HIV/AIDS rely on a limited range of sources: reporters contact or are contacted by NGOs and UN agencies and sometimes health ministry officials and people living with HIV. ?

Dr Jaya Lakshmi Shreedhar

Technical Health Advisor, Internews Network

HERE ITS PUNJABI, HINDI & SHAHMUKHI TRANSLATION/TRANSLITERATION IS BEING GIVEN