Ethical Issues in Coverage of HIV/AIDS in China

Bob Meyers
Journalist to Journalist Program National Press Foundation Chinese Media Workshop XVI International AIDS Conference Toronto, Canada August 12, 2006

Do we have an ethical obligation to cover HIV/AIDS?
Size of the epidemic Potential for its growth Impact on society Impact on people

Dr. Peter Piot, Executive Director, UNAIDS put the Asia AIDS crisis in perspective in July 2004:

``Asia is now where Africa was 15 years ago.µ
6 July 2004

´
2004 7 6

15

Where is Africa now?
Adults and children estimated to be living with HIV as of end 2003
Eastern Europe & Central Asia

North America

Western Europe

1.0 million
[520 000 ± 1.6 million]

580 000
[460 000 ± 730 000]

1.3 million
[860 000 ± 1.9 million]

East Asia

Caribbean

North Africa & Middle East

900 000
[450 000 ± 1.5 million]

430 000
[270 000 ± 760 000]

480 000
[200 000 ± 1.4 million]

South & South-East Asia

Sub-Saharan Africa Latin America

6.5 million
[4.1 ± 9.6 million]

1.6 million
[1.2 ± 2.1 million]

25.0 million
[23.1 ± 27.9 million]

Oceania

32 000
[21 000 ± 46 000]

Total: 37.8 (34.6 ± 42.3) million
00003-E-4 ± July 2004

Dr. Piot also said this about journalism, 4 years ago:
When it comes to AIDS, journalists can have more of an impact than doctors.µ 
J2J Conference, Barcelona, Spain, 2002

³³J2J Conference, Barcelona, Spain, 2002

What are the obstacles journalists face in covering HIV/AIDS?
Lack of information Lack of interest Fear Stigma & discrimination Lack of time Lack of official & editorial support Disagreement between parts of government over AIDS coverage

Lack of information
Only 9 % of Chinese people know all about AIDS transmission Heard about AIDS: 
96.2 % urbanites  82.6 percent of the people in small towns  75.1 percent of rural villagers.
See notes, this slide. Source: Horizon Group/Futures group Europe 2003

9

³³ 96.2 ³³ 82.6 ³³ 75.1

Fear
Emphasize that HIV/AIDS cannot be spread through touch, shaking hands, or sharing food You don·t become infected by breathing, walking new somebody or walking where someine else once walked

Stigma
Stigma = fear or prejudice against what is different

Presi ent Jintao and other senior leaders isit Beijing¶s Youan ospital. President u shakes hands ith an IDS patient
¥

rom a presentation y i e Minister of
¤ ¢

£

¡ 

ealth Wang Longde) 

During the 2005 Spring Festival, Premier Wen Jiabao visited HIVpositive people and their families in Shancai county in Henan. He spent the festival with AIDS orphans and parents who had lost their children to the disease.

««

Premier Wen Jiabao said in his published article ´Through campaign and education« to enable the whole society to treat people with HIV/AIDS appropriately, to provide more care to them, and to reduce stigma and discrimination against them.µ

Vice Premier Wu Yi went to Henan province to visit villages heavily affected by HIV. She visited HIVpositive villagers and their families and inspected the HIV/AIDS prevention programs in the province. 

³

Vice Premier Wu Yi said ´The whole society should be mobilized to eliminate discrimination against people with HIV/AIDS, and provide good care for them.µ She further emphasized ´we should promote education about the legal system; raise awareness of the laws governing HIV/AIDS prevention and control; eliminate social fears towards, and discrimination against, people affected by HIV/AIDS; and raise awareness of the legal obligations of HIV positive people and AIDS patients.µ

Reality
People don¶t always respond as their leaders want them to

Reality:

You contract HIV/AIDS through specific things you do«

IV drug use Unprotected sexual intercourse with HIV+ person Give birth to or nurse a baby if you are HIV+

HIV HIV

Reality:

Or have done to you«

Blood transfusion Medical procedure Sexual violence

Perspective
HIV/AIDS is the worst epidemic the world has ever seen 
Worldwide  No cure  Virus mutates

HIV/AIDS

³³ ³³ ³³

90% of those with HIV don·t know they have it

90%

Perspective
The development of an effective drug takes years, if not decades Testing it for safety adds additional time So does finding safe & effective ways to bring it to people

Perspective
HIV/AIDS is preventable through education HIV/AIDS

Journalists are educators 
We provide information  We provide context  We show real people dealing with real issues

³³ ³³ ³³

Subjects to consider when we want to do ethical stories about HIV/AIDS
Language 
Words & pictures  Describing various causes  Ignoring a specific ´causeµ  Blaming the person  Eliminating overcharged language ³ ³ ³ ³ ³

³

Accuracy 
More than notetaking

Privacy The stories of people

Language to avoid
Plague Disease ´Catchingµ AIDS Infected with Victims Patients (unless they are hospitalized) Homosexuals Drug users

««

Better choices to consider
Epidemic Illness A person with HIV/AIDS Someone who has « Men who have sex with men IV drug use

/ ««

Why do we want to be ´value-neutralµ in our language?
Highly-charged emotional language can separate subject from reality. People who are struggling with a disability or medical issue have to work twice as hard to be accepted on their own ² without having to fight misleading labels.

For accuracy «
Get the best medical & scientific sources you can find The time to develop sources is BEFORE you need them Use pictures & graphics DEVELOP A MENTOR!

A mentor is « ««
One of the most important tools you can have Someone to bounce ideas off of Someone who can help you with accuracy

Privacy
Individuals have a right to privacy Journalists have an obligation to show and tell the truth Do they conflict?

YES!

Questions as you consider this conflict

LAWS regarding local, district, state, regional or national rights to privacy LAWS regarding society·s right to know Human rights EXAMPLES in which your society has wrestled with this conflict

From your experience, would an ethical journalist « «

Write/broadcast a story before talking to the subject? Make up facts? Make up quotes?

From your experience, if you ever saw these bad practices taking place in your newsroom, what should you do?

Tell the editor? Complain to the union? Tell the advocacy groups?

If some one is victimized by bad journalism, what can or should he or she do? /

Complain to the editor or publisher? Hire a lawyer? other

When ethical concerns are lacking, there is plenty of opportunity for stigma to flourish

Sources of Stigmatization
Gender-related Stigma  Impact of HIV/AIDS can disproportionately effect women due to pre-existing economic, educational, cultural and social inequities 

Disease identified with female sex workers and/or with promiscuous males

Sexual Stigma  Associated with sexually transmitted diseases, homosexuality, promiscuity, prostitution, and sexual ´devianceµ

Source: HIV/AIDS-related Stigma and Discrimination: A Conceptual Framework and an Agenda for Action (Richard Parker and Peter Aggleton, The Population Council, 2002)

Effects of Stigmatization
Individuals with HIV/AIDS fear being associated with stigmatized groups
HIV/AIDS

HIV/AIDS increases the stigmatization of individuals in marginalized groups HIV/AIDS Can make life unbearable for people living with disease Can affect prevention efforts, as well as treatment and care

Source: HIV/AIDS-related Stigma and Discrimination: A Conceptual Framework and an Agenda for Action (Richard Parker and Peter Aggleton, The Population Council, 2002)

Ways to Fight Stigma
Educate the public about HIV/AIDS Encourage healthy interaction with people living with HIV/AIDS Emphasize that HIV/AIDS cannot be spread through touch, shaking hands, or sharing food Write stories about the many different types of people that are affected by the disease
Source: HIV/AIDS-related Stigma and Discrimination: A Conceptual Framework and an Agenda for Action (Richard Parker and Peter Aggleton, The Population Council, 2002)

Stories centered on Stigma 

Would you care for a family member sick with HIV/AIDS?  Would you buy fresh vegetables from a shopkeeper with AIDS?  Should a female teacher who is HIV+ be allowed to continue teaching in school?  Would you want to keep the HIV+ status of a family member a secret?

Story ideas 1 
How do people who are HIV+ feel about the word ´victimµ?  Should karaoke bars be regulated in some way?  Follow an HIV+ person as he/she attempts to get medicine?  Do a story about the stress on health professionals, like nurses, as they deal with people who are

Story ideas 2
What research into HIV/AIDS is being done in China? How do families talk about HIV/AIDS? 
To prevent it  If someone is living with it

³ ³

Story ideas 3
Why are men reluctant to use condoms? What can we tell readers/viewers about a female condom? WHAT ARE YOUR IDEAS?

Voices

How people with HIV/AIDS ² or any other disease ² are seen by others is one of a journalist·s responsibilities

10 QUESTIONS FOR ETHICAL DECISION-MAKING

1. What do I know? What do I need to know? 2. What is my journalistic purpose? 3. What are my ethical concerns? 4. What organizational policies and professional guidelines should I consider? 5. How can I include other people, with different perspectives and diverse ideas, in the decision-making process? 6. Who are the stakeholders -- those affected by my decision? What are their motivations? Which are legitimate? 7. What if the roles were reversed? How would I feel if I were in the shoes of one of the stakeholders? 8. What are the possible consequences of my actions? Short term? Long term? 9. What are my alternatives to maximize my truth-telling responsibility and minimize harm? 10. Can I clearly and fully justify my thinking and my decision? To my colleagues? To the stakeholders? To the public? > Ethics Tool: Decisions on Deadline, www.poynter.org

Trusted websites
www.unaids.org www.unesco.org www.stats.gov.cn www.iasociety.org www.who.org

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