HIV and AIDS is a story of critical importance, and all audiences deserve full, clear and intelligent coverage. Journalists should cover it with imagination and initiative, and commit themselves to the highest ethical standards.
The factsheet below outlines some key principles to adhere to in striving to attain high ethical standards in reporting on HIV/AIDS. It is an adapted version of Franz Krüger's paper: "The ethics of reporting HIV and AIDS" for the UNAIDS/Saef/SADC Conference, 8 April 2005. For the full paper, click here.
An influential trio of principles was identified in a study by the Poynter Institute in the US in the early 1990s, on the basis of detailed interviews with hundreds of journalists and editors, and a close reading of many codes of conduct.1 These are:
A fourth principle is sometimes added: accountability.
The following sections will discuss how these principles apply to the coverage of HIV and AIDS.
(c) COL CLIPPINGS
Franz Krüger has developed nine principles in covering HIV/AIDS. These are set to become official Southern Africa Editors' Forum (SAEF) policy.
1. Accuracy is critical, since important personal and policy decisions may be influenced by media reports. Journalists should be particularly careful to get scientific and statistical information right. Facts should be painstakingly checked, using credible sources to interpret information, verify facts and make statistics and science accessible and relevant to wide audiences. Sources should be named as often as possible. Stories should be written in context.
2. Misconceptions should be debunked, and any claims of cures or treatments should be reported with due care. Journalists should look at all stories critically.
3. Clarity means being prepared to discuss sex, cultural practices and other sensitive issues respectfully but openly. Care should be taken to ensure language, cultural norms and traditional practices relating to, for example, inheritance and sex are understood and accurately reported.
4. Balance means giving due weight to the story, and covering all aspects, including medical, social, political, economic and other issues. Balance also means highlighting positive stories where appropriate, without underplaying the fact that HIV and AIDS is a serious crisis.
5. Journalists should hold all decision makers to account in their handling of the pandemic, from government to the pharmaceutical industry and advocacy groups. They should be engaged with, but not captive to, any interest group.
6. Journalists should ensure that the voices and images of people living with and affected by HIV and AIDS are heard and seen. The human face of the pandemic should be shown. They should take care that the voices heard are diverse, and include those of women and men, vulnerable and marginalised people.
7. Journalists should respect the rights of people with HIV and AIDS. Vulnerable people should be treated with particular care. Journalists should seek informed consent before intruding on anyone's privacy. They should seek to understand the possible consequences for individuals who participate in their report, and to ensure those individuals are clear about the consequences. Only in cases of overwhelming public interest can somebody's HIV status be reported against their wishes or should journalists hide their professional identity.
REPORTING TIP: What is informed consent? Some publications require that sources sign an informed consent form.
8. Particular care should be taken in dealing with children. They experience the most extreme consequences of the epidemic, and their rights to privacy should be afforded even greater protection. They should only be identified if the public interest is overwhelming, and then only if no harm to them is foreseeable and they and any parents or guardians have given informed consent. Children have the right to participate in decisions affecting their lives. They also have the right to be heard, and journalists should ensure that the particular concerns they face are covered.
9. Discrimination, prejudice and stigma are very harmful, and journalists should avoid fuelling them. Particular care should be taken not to use language, or images, that reinforce stereotypes
In some senses the first and most basic principle is accuracy. In the context of HIV and AIDS, this means that journalists need to be very careful about the science involved, which is sometimes very complex. Also, we often write about statistics, and again journalists need to be careful to get them right.
How much room is there for the provision of basic health information? Some have placed great stress on this, particularly in the broader context of the media. Telephone numbers of AIDS counselling services would fall under this heading. In this context, the distinction between media and journalism is useful. In other areas of media there is a lot of room for information of this kind. In the news pages, this should not be a primary focus, although there is nothing wrong with accommodating it if possible.
In a broader sense, the truthtelling principle means telling the story fully and giving it due weight. This involves a number of things.
It means reporting the pandemic in a nuanced way, and investigating the social, medical, personal, scientific, economic, educational, political and other aspects of the issue. That kind of balance won't be achieved in a single story, but it can be achieved over time.
It is particularly important to report with due regard to the gender dimensions involved. Journalists should make sure that women's voices are heard, and investigate the ways in which the pandemic is affecting women and girls differently to men and boys. A gender dimension can be found in almost any story.
In a more general way, a gender perspective of HIV and AIDS points to the need to report on wider gender inequalities that fuel the pandemic, on issues like gender violence, transactional sex and much else.
That gender perspective should also lead journalists to consider the general question of media representations of men and women, and make sure their reporting undermines rather than fuels harmful attitudes.
Gender is an important part of the context, without which the pandemic can't be properly understood.
The call is sometimes made not to report the story purely in terms of gloom and doom. It's a legitimate point, and opportunities to report "positive lives" — stories of people living positively with HIV and AIDS — should be taken. But it would be irresponsible and inaccurate to report the story as anything but a serious crisis. Nobody is served by reporting that tries to play down the problem.
Telling the whole story means giving the pandemic a human face. There have recently been calls to allow the voices of people with HIV or AIDS to be heard more strongly.
There is a fundamental problem that often stops us covering this story fully, and it arises from our own news values. The story of HIV and AIDS does not always fit easily into those values, which call for drama, conflict and the like.
In addition, many audiences feel relatively unaffected. One editor is quoted in the Cadre study as saying: "I don't think AIDS is going to kill our readers in the same proportion that it might kill other classes of people. The threat for our readership is an economic one, primarily."
Our news values, our normal practices are actually in the way of our truthtelling duty, when it comes to this particular story. Some have said we need to change our news values, however those values are very deeply ingrained.
But there are options. Normal news values are not as rigid as they are sometimes made out to be. Ours is a craft that values inventiveness, even though that may sometimes be hard to see in the grey expanse of everyday coverage. The classic hard news story may not easily lend itself to coverage of the pandemic. But there are other formats — it is often just a question of being inventive or original.
This means keeping a distance from the various players, in order to be able to report honestly. This includes governments, even (perhaps particularly) in countries where it owns or dominates broadcasting and other media.
It's just as important to maintain a healthy scepticism when it comes to the pharmaceutical industry.
Some journalists interested in the issue find themselves siding with activist groups. But they should be wary of these, too. A whole industry has developed around AIDS, and these groups need to be held to account as much as anybody else.
Journalists should not accept payment for writing stories, except of course from their employers.
The requirement of independence also raises the issue of paying sources. The expression "chequebook journalism" usually conjures up images of British tabloids paying vast sums for sensational stories. But here we are often dealing with people who really have almost nothing.
Sometimes, journalists will argue that it's not necessary to pay because reporting itself benefits people with AIDS. In an article published in The Star, Kerry Cullinan of health-e news dismissed that argument.2 She writes:
"Journalists cannot, in truth, say that anything concrete will come from our stories. Anyone who promises that their stories will lead to a flood of funds is lying. What is in it for journalists is crystal-clear: we are paid to write stories about HIV/AIDS, so we need those affected to open their hearts to us.
"To salve our consciences, some journalists offer groceries or money in exchange for stories. While some may reject this 'paying' for stories as an odious tabloid-press habit, at least it offers benefits to both sides. The journalist gets the story and the family can eat for another month."
She does go on to argue that these arrangements remain unsatisfactory.
It is a difficult issue, but audiences don't, in general, trust stories that have been bought, and that should be taken very seriously. And it's instructive that the ethics social scientists use don't allow for payment of interviewees either.
The media can cause significant harm. Established ethics call for harm to be minimised — not avoided completely, since some kinds are unavoidable or even justifiable.
The concept of "public interest" is a key one in the ethics of journalism. It is defined in the SA Press Code of Professional Practice:
"The public interest is the only test that justifies departure from the highest standards of journalism and includes:
. detecting or exposing crime or serious misdemeanour;
. detecting or exposing serious anti-social conduct;
. protecting public health and safety;
. preventing the public from being misled by some statement or action of an individual or organisation;
. detecting or exposing hypocrisy, falsehoods or double standards or behaviour on the part of public figures or institutions and in public institutions."
In considering many situations, we use the test of public interest, asking whether it outweighs the harm that may be caused? Neither the public's right to know nor the harm to individuals have an automatic priority, and deciding which weighs more heavily is often very difficult. Certainly, the public's claim to information needs to be taken very seriously. Journalists' first loyalty should be to the public, and more particularly to the section that constitutes their audience. In the context of HIV and AIDS, we should not lose sight of the public need and desire to be informed properly.
There is a second general consideration that should be introduced here. Most of the harm issues that arise need to be understood in the context of the "triangle of stigma, denial and discrimination." 3
The stigma is very real. It hurts people, even kills, as the example of Gugu Dlamini shows. She was stoned to death in KwaZulu/Natal after disclosing her status. As journalists, we need to take the stigma very seriously.
There are three main areas of potential harm that can be identified:
This right is enshrined in many constitutions, it is a legal right and an ethical duty.
In concrete terms, it means taking great care when it comes to reporting on people's status. Their story, the way their family deals with the situation, medical details, photographs — all of this belongs to their private sphere, over which they have control.
The issue has a particular slant where, as is so often the case, journalists are dealing with people who are poor and disadvantaged. They need to take particular care not to bulldoze people, pushing them into doing something they may not really want to do.
A very useful 
code of conduct 4 developed by the Journ-AIDS website talks about informed consent, which means journalists should make sure that people they want to write about know and have thought through the implications of putting their lives on public display. This means journalists identifying themselves, explaining clearly and honestly what is intended and speaking in their language, avoiding promises that can't be kept and so on.
There are particular complexities here around children. What constitutes informed consent if a journalist wants to talk to a 14-year-old who is heading a household? The Journ-AIDS code says: "Where possible informed consent should be obtained with the knowledge and consent of the children involved from a responsible adult, guardian or carer." It is a useful approach, since it asks for the children themselves to be consulted — they often know quite well what is in their best interests. It also recognises the fact that circumstances may not allow for an adult to be asked, and that adults — even a guardian — may not always be acting in the child's best interests. These complexities underline the need to be particularly careful in dealing with children.
As indicated above, public interest can trump the right to privacy, if there is a strong public interest. This is recognised in various codes.
But journalists need to be very sure of the public interest before they decide to disclose somebody's status against their will. Undoubtedly, openness is an important principle, but that doesn't mean people can be dragged into the trenches of this battle if they don't want to be there.
(Source: AIDSinfonet.org)
Journalists can cause a different kind of harm through their reporting of claims around cures.
In the Southern African context, though, these issues are overlaid with questions of culture and politics. In South Africa, a dissident view of the pandemic was given weight for a while because President Thabo Mbeki seemed to be supporting it. Such views can't be ignored, no matter how crazy the journalist thinks they are. But they should be reported in such a way that it is clear they are fringe.
Traditional healers sometimes come forward with claims of being able to cure AIDS. Does a respect for traditional culture mean one should take these claims seriously or should one assume that only Western medicine can find solutions?
Perhaps a distinction can be made between limited claims and those that are actively harmful. Circumcision can be carried out in ways that minimise the risk of infection. And the use of the African potato does little harm. But one should not be squeamish in hammering myths like the one that sleeping with a virgin can cure AIDS.
With regard to claims of cures, Foreman says: "(A)ll claims of effective treatment, from whatever source, (should be) subject to scrutiny and not reported uncritically."5 He sets out a series of questions that should be asked, including how the claimed treatment is meant to work, what its side effects may be, what kind of trials were undertaken and others.
Reporting — along with other forms of media representation — may perpetuate harmful social attitudes. If we always illustrate stories about HIV and AIDS with pictures of poor black women, we are perpetuating a stereotype about the disease that is both inaccurate and harmful. If we focus unnecessarily on how people were infected, we may reinforce an attitude that seeks to blame those with HIV or AIDS for being infected.
What is required is a balanced representation. This means taking care with generic images — where a general, non-specific picture is used to illustrate a report. These should, over time, reflect the different kinds of people who may be affected.
Reporting should also not reinforce a "them/us" mentality , where people with HIV and AIDS are seen as a separate species, a problem to be dealt with. Society needs to understand that we are all affected in one way or another.
Even though it is generally wrong to force people to disclose their status, there's nothing wrong with encouraging openness. Where prominent people have disclosed their status, they have generally received a lot of positive publicity. In doing so, the media (and they, of course) supported the principle of openness.
In this context, the question of language comes up. Various documents provide lists of problem words and expressions, but there's little unanimity about which ones should be avoided. Click here for some examples from the African Women's Media Centre.
Care should be taken with the use of language, but it should seen in the context of the general tone of reporting. A useful formulation comes from a 2001 UNAIDS document, which refers to the need to report in a "non-stigmatising and non-judgmental manner".6
Franz Krüger has been a journalist for over 20 years, working in print and broadcasting in South Africa, Namibia and the United Kingdom. He lectures journalism at the University of the Witwatersrand and is the ombud for the Mail&Guardian newspaper, for which he also writes a monthly column. He is the author of Black, white and grey: ethics in South African journalism (Double Storey, 2005).
1. Jay Black, Bob Steele and Ralph Barney: Doing Ethics in Journalism: A handbook with case studies (Needham Heights, MA: Allyn and Bacon, 1995), p17
2. June/July 2000, copy from author
3. UNAIDS, The media and HIV/AIDS, p11
4. Also available on Journalism.co.za here.
5. Foreman, op cit, p29
6. UNAIDS: pamphlet announcing the 2001 consultation meeting on Advocacy for action on stigma and HIV/AIDS in Africa (UNAIDS, Pretoria , 2001), p4.
(also available from the SAUJ website)
Whilst recognising that there are circumstances unique to HIV infection, the fundamental principle to be applied is that HIV infection and AIDS should be approached on the same basis as any other serious condition.
1. The Union seeks to ensure that employers provide accurate information and education on HIV and AIDS, as well as access to counselling and referral; after appropriate consultation with the Union.
Such education shall be provided to assist in, inter alia, the avoidance of discriminatory and unfair treatments and attitudes in the workplace; the provision of information to ensure appropriate, accurate and non-discriminatory reporting on HIV and AIDS; and the provision of adequate and appropriate information for the maintenance of a healthy workforce.
2. The Union seeks to ensure that employees with HIV or AIDS shall be protected against discrimination, victimisation, harassment, degrading or inhumane treatment, and punishment in the workplace. Should such treatment occur, the Union demands that the offending person/s shall face a disciplinary enquiry in line with agreed procedures.
Should such person/s be found guilty, he/she/they shall be required to undergo appropriate counseling apart from any other disciplinary action which may be appropriate.
3. No person shall be required to undergo pre-employment testing for HIV. Where such testing is required as a condition for the enjoyment of employment benefits, employers shall ensure that this condition is non-discriminatory as between HIV/AIDS and other life-threatening conditions.
4. No employee shall be required to undergo an HIV test at the request, or upon the initiative of an employer.
5. No person shall be barred or dismissed from employment or otherwise prejudiced purely on the grounds of their having HIV/AIDS.
6. No employee shall be denied appropriate alternative employment or training or other opportunities which exist merely on the basis of HIV infection or AIDS.
7. Employees who are clinically ill or medically unfit for work shall enjoy benefits in terms of the relevant conditions of employment as negotiated from time to time between the Union and the employer.
8. No person shall be required by an employer to disclose to the employer his/her HIV status, or the HIV status of another person. Should such disclosure take place, the employer shall carry out disciplinary measures as outlined in clause 2 of this Policy.
9. Joint employer/Union committees shall oversee the implementation and maintenance of this policy.
10. The Union undertakes to notify all employers of this Policy and agrees to work towards the inclusion of this Policy in any existing/future agreements with employers.
11. The Union shall review this Policy annually.
1. Code of Conduct
ACCURACY AND RELEVANCY
Clause (iii) of the SAUJ's Code of Conduct states that journalists shall ensure that the information they disseminate is fair and accurate, and calls on journalists to avoid the expression of comment and conjecture as established fact and falsification by distortion, selection or misrepresentation.
Clause (x) states that a journalist shall not originate material which encourages discrimination on the grounds of race, colour, creed, gender or sexual orientation.
In light of the above, and accepting that journalists are in a very powerful position to influence the public's attitude towards HIV and AIDS and that there are still a large number of people ignorant of the facts surrounding HIV and AIDS, journalists shall ensure their stories are accurate and avoid sensationalism.
Journalists shall seek to avoid irrelevant references to race, colour, creed, gender or sexual orientation when reporting HIV and AIDS. Such references entrench existing prejudices.
In line with the SAUJ's policy on press freedom, journalists shall seek to ensure wide, balanced and informed coverage of HIV and AIDS.
PRIVACY
Clause (vi) of the Code of Conduct states that subject to justification of overriding considerations of public interest, a journalist shall do nothing which entails intrusion into private grief and distress.
Journalists shall observe the legitimate right of persons with HIV/AIDS to privacy and confidentiality. The identities of persons with HIV/AIDS and those of their friends and families shall be used only if permission has been granted by those concerned.
2. Style Guide
| AVOID | WHY | USE INSTEAD |
| Aids | First, because the word already means many things. Second, because it is an acronym for Acquired Immune Deficiency Syndrome. | AIDS |
|
Carrying AIDS AIDS carrier AIDS positive. |
This confuses the two distinct phases of being infected with HIV and having AIDS. People can "have" AIDS but can't "carry" it. | HIV-positive. People living with HIV/AIDS. Person living with HIV. |
| AIDS test | Most tests these days detect antibodies to HIV. There is no "AIDS test" as this depends on a diagnosis according to clinical symptoms. | HIV antibody test. |
| AIDS virus. | This can easily cause confusion between HIV and AIDS. | HIV |
| Catching AIDS (i.e. become infected with HIV). | You can't catch AIDS. It is possible to catch HIV but this is misleading as it suggests transmission is similar to that of colds or 'flu. | Contract HIV. |
| Catch AIDS (i.e. develop AIDS). | AIDS develops from HIV (acquired). You can't "catch" it from elsewhere. | Develop AIDS. |
| AIDS sufferer | If someone has AIDS it doesn't mean he/she is sick all the time. People with AIDS can continue to work and live a normal life for some time after diagnosis. Suffering is therefore not appropriate. | Person with AIDS |
| AIDS victim | Suggests helplessness — not appropriate. Implies a wrong-doer — brings in the idea of blame. | People living with HIV/AIDS. Person living with AIDS. |
| Innocent victim | Suggests anyone else with HIV or AIDS is guilty. | People living with HIV/ AIDS |
| High risk groups | There is risk behaviour. There are not risk groups. The fact of being classified as a member of any particular group does not put anyone at greater risk, but it is what a person does regardless of the group to which he/she "belongs". | High risk behaviour |
| Full blown AIDS | When the correct distinction between HIV and AIDS is always made, there is no need to use the term "full blown AIDS" | AIDS |
| To die of AIDS | AIDS is not a disease but a syndrome (a group of illnesses). A person dies because they cannot adequately fight an opportunistic infection, such as cancer or TB | To die of an AIDS-related illness |
|
SAUJ document, slightly amended by Journ-AIDS June 2005 |
||
USE WITH CARE
| USE WITH CARE | WHY | USE INSTEAD |
| Promiscuous |
Implies a moral overtone which may be inappropriate: also very imprecise. |
Having multiple partners |
| Prostitute | Not everyone who has many partners is a "prostitute". Not everyone who takes money or goods in exchange for sex has many partners. | (Commercial) sex worker |
| AIDS patient | Only appropriate when someone is ill. Care is needed to distinguish this from HIV infection, when 'patient' is not appropriate. The word patient should be used when referring to the clinical setting only. | People living with HIV/AIDS. Person living AIDS |
| Catastrophe/ Disaster | There are still very few parts of the world where this is an accurate description. | Epidemic |
| Plague | Plague suggests a contagious disease, which AIDS is not. | Epidemic |
|
SAUJ document, slightly amended by Journ-AIDS June 2005 |
||
The Southern Africa Editors Forum (SAEF) Guiding Principles for Ethical Reporting of HIV and AIDS & Gender are now available in Adobe PDF format:
Cadre: Ethical Guidelines in Reporting on HIV and AIDS for the South African Media
Cullinan, Kerry:
The Media and HIV/AIDS: A blessing and a curse, paper for AIDS in Context Conference, April 2001
Krüger, Franz:Ethics in a time of AIDS, paper for 'Secrets and lies? The ethics of HIV/AIDS reporting', an indaba arranged by the Nelson Mandela Foundation & HIV/AIDS and the Media project, 1 Feb 2005. See publication of indaba proceedings and transcript of discussion forum.
Krüger, Franz:The ethics of reporting HIV and AIDS. Paper for UNAIDS/Saef/SADC Conference, 8 April 2005.
Wasserman, HJ & De Beer, AS: Ethical reporting on HIV/AIDS in South African cultural contexts: an overview and case study (forthcoming, Communicato)
