Parents and patients have the right to not be hounded by cameras and asked, “How do you feel about it?”

In the sweltering heat and amidst throngs of people, Shahid (all names have been changed) stood with his 18-month-old beautiful daughter Hira cradled in his arms. She was severely ill and her father had the lingering suspicion that she was inflicted with the same virus that everyone was talking about.

There was absolute chaos at the health camp that had been rapidly set up with doctors from Karachi. Physicians were trying to screen and provide treatment to a large number of children. There were huge queues of panic-stricken patients and their families, and of course, news reporters eager for stories.

A camera zoomed in on Shahid’s face. Hurriedly, he covered Hira’s face but the camera came closer. Shahid shouted at the cameraperson to stay back. He did not want his precious daughter’s face to appear on television.

***

Newspapers and TV channels, since the past month, have been flooded with news and updates related to the development of the HIV outbreak in Ratodero, Larkana.

A number of key issues have been highlighted, including the lack of preparation of the health sector to deal with such a monstrous situation, in which more than 600 people, mainly children, have been affected.

One hopes that this outbreak will be used as a window of opportunity by the relevant authorities to intervene and remedy the issues plaguing the health system.

Editorial: HIV in Larkana

The media plays a pivotal role in providing information to the masses and spreading awareness — but the power of the media can also be a double-edged sword.

The media coverage of the HIV outbreak may have been instrumental in drawing widespread national, and indeed international, interest to the issue — both in the short term such as setting up screening camps and in the long run by a crackdown on quackery in the affected areas.

At the same time, it is important to highlight the issues associated with media coverage, specifically in the electronic media, of the situation.

Irresponsible journalism

The health minister of Sindh touched upon these concerns, stating that the media had breached confidentiality while reporting this sensitive issue by not only disclosing the names of the affected individuals, but by also identifying these individuals through showing their faces on television.

She went on to warn that, if such follies were committed again, the government would take a hard stance.

When the minister made this statement, it was misperceived as an attempt (and reported as such) by the government to prevent the media from reporting state lapses with respect to healthcare in the province. Such misperceptions are dangerous and only serve to increase the hysteria which is already widespread in an outbreak.

The warning to the media came too late since the damage had already been done. The ethics on display, or the lack thereof, by the media need to be analysed, especially if we are to cultivate a culture of responsible journalism.

A physician who had gone to provide treatment in the camps narrated to us how members of the media flocked inside the screening centres taking videos of the entire scene, which was nothing less than chaotic (as one would expect in a public health emergency), and trying to speak to the affected individuals.

Also read: HIV cases in Larkana put a question mark on Sindh’s healthcare system

Imagine being told that your child is now affected by a virus which has been likely caused by something that was supposed to cure your child, and that this condition will persist for the rest of your child’s life. And then imagine being followed around by a camera asking you, “How do you feel about it?”

While this has been the norm in almost all situations worthy of the front page or TV headlines, the fact that this is an established norm does not make it an acceptable one.

Such attitudes, particularly in situations like health emergencies, display utter insensitivity to the misery of the patients and their families. What is even worse is that the identities of these patients were disclosed and their faces publicised on national television, thus grossly violating their privacy.

Shahid’s case, based on a true story relayed to us by a physician who was at the scene, is a serious violation since he specifically instructed media personnel not to film his daughter.

The same physician later noted that when Shahid and his daughter were being examined by a physician, another camera captured their entire interaction. In the evening, Hira’s face was on national television, without the permission of her father.

While we do not know whether Shahid or his family saw their faces afterwards on television, or what their sentiments were regarding this breach of privacy, we can certainly comment on the fact that this was an unethical action, since a private interaction was being recorded without the consent of the family.

Transgressing boundaries

There is no doubt that the media is responsible for conveying news to the public in order to inform about the development of the situation and spread awareness about HIV. It certainly did so, even in this outbreak. Efforts to educate the public about HIV and the overall situation were undertaken by both print and electronic media.

However, at first, the pediatrician who allegedly triggered this outbreak was repeatedly named and shamed. The media hype perpetuated the misconception that the unsafe medical practices of the pediatrician led to the outbreak. This was taken for a fact by the general public.

It should be noted that the findings of the Joint Investigation Committee that was formed consisting of law enforcement officials and technical experts have not yet been released. The media should not have projected these speculations as conclusions.

Editorial: Journalistic ethics

Some of the infectious disease specialists that we spoke to who participated in the HIV screenings and had assessed the situation on the ground have also stated that such a severe outbreak could not have simply occurred due to the unsafe practices of one doctor, but due to a combination of various factors. The front page of EOS corroborates this.

The outbreak in Larkana was simmering, a disaster waiting to happen, if one considers the various risk factors present in the region. The previous outbreaks (one in 2003, another in 2008 and a subsequent one in 2016) had occurred in high-risk populations including injection drug users, transgender sex workers and dialysis patients requiring blood transfusions.

The present outbreak has affected low-risk populations, including children, but this is not to say that the other risk factors were not already there. Combined with quackery, unsafe practices exhibited by physicians who indeed have been negligent in their behaviour and a malfunctioning healthcare system, the present crisis is not surprising.

The knee-jerk response in the initial days of the outbreak was to blame one physician, but it failed to account for the fact that the physician operated within a system that allowed for and facilitated such practices to occur. This had also happened with the media reporting during Nashwa’s case.

Apart from somewhat inaccurate and hasty reporting, boundaries were transgressed amidst the media frenzy when it displayed complete insensitivity to the misery of patients and their families in a situation of turmoil, and did not provide a private (and safe) space for clinical interactions to take place.

Health matters and information related to health are the private affairs of individuals who would rather not have their sensitive information broadcast on national television.

Patients not only have a right to informational privacy, in the sense that their private information must be protected, but also with respect to their physical privacy, something which was also violated in several instances at the screening centres by the mere presence of third parties like media reporters.

This becomes all the more important in the case of HIV given the stigma associated with it.

Learn more: Pakistani medical codes weren't violated in sending friend request to Sharmeen's sister – and that's a problem

Within the medical profession, healthcare professionals are supposed to be held to high standards as far as the protection of the private health information of patients is concerned. Sharing these details with a third party not connected to the medical treatment of the patient is considered a breach of confidentiality.

There are important ethical values behind this, as breaching confidentiality endangers the fiduciary relationship between the patient and the physician, and ultimately may also erode the trust that patients have in the medical profession.

The pertinent question, however, is whether the media is also held to a similar standard for preserving confidentiality when it has access to private and highly sensitive information of individuals. The answer is yes, since the media in emergency situations has a far greater responsibility than perhaps that of an individual physician.

If a physician violates the privacy of a patient, only a specific life may potentially be affected. However, the media, with its far-reaching impact, can colour perceptions, influence public opinion and thus its reach is far more consequential.

Given the stigma surrounding HIV, the media ought to have been more careful with its reporting, particularly with disclosing the names of the affected persons, thus identifying them.

The guidelines exist

International guidelines for journalism also hold reporters and journalists to high standards for respecting privacy and preserving confidentiality.

For example, the Unesco International Principles of Professional Ethics in Journalism considers protecting human dignity as one of the core values of professionalism among journalists. Others, such as Australian Journalist Code of Ethics, advises reporters to respect the privacy of grieving family members and not intrude upon them in times of misery. The National Code of Conduct for journalism in Pakistan also considers privacy and confidentiality a core ethical value.

Explore: How Pakistan can save more lives at the site of bomb blasts

Apart from ethical guidelines, a provincial law also deals with disclosure of HIV status, something which the health minister also alluded to. Chapter VII of the Sindh HIV and AIDS Control Treatment and Protection Act, 2013 specifically deals with preserving confidentiality by stating that:

“all health workers, and any other person while providing services, or being associated in the course of his duties…..or by conducting surveillance reporting, or research, shall prevent disclosure of any information that another person: (a) is or is presumed to be HIV positive; (b) has or is presumed to have AIDS; or (c) has been or is being tested for HIV infection.”

One can safely assume that the media personnel present at the screening camps are subject to the provisions of this act since they were involved in both reporting and research.

Failure to preserve this confidentiality is also penalised under this act:

“any person who publicizes the confidential health information and/or records of another person….shall be liable to imprisonment not exceeding five years and not less than two, and a fine of two hundred thousand rupees.”

With the existence of a provincial law and a national ethical code of conduct for journalism, such a breach ought not to have happened, despite the fact that it is commonplace in our media landscape. Established practices should not be accepted readily, but challenged.

This is not to say that the media cannot be useful in healthcare emergencies. Responsible reporting can help raise awareness and garner support from the society.

A good communication strategy in times of crisis would involve multiple stakeholders, one of which is the media. A dialogue between health authorities and journalists should mediate the process of relaying information and prevent spreading panic and fear.

Are you addressing the HIV crisis in Pakistan? Share your experience with us at prism@dawn.com