While conducting surveillance for the Zika virus in January and February, the Gujarat government collected blood samples from more than 1,000 people. However, the government did not tell the people from whom blood was collected that the samples would be tested for Zika. The surveillance exercise began after the first Zika infection was detected in a 34-year-old new mother on January 4 in Bapunagar in Gujarat.Two more cases – one of a 22-year-old pregnant woman and another of a 64-year-old man – were identified as a part of this surveillance.

“In patients whose blood was being tested for malaria and dengue, we were collecting an additional sample to test for Zika virus also,” said a senior medical doctor at BJ Medical College in Ahmedabad, which was instrumental in collecting the samples and sending it to the National Institute of Virology for a for Zika.

Almost 1,200 blood samples were collected from the Bapunagar and Gopalnagar localities of Ahmedabad from people who had had fever. The lab technicians who were collecting the blood sample from the communities were told that the surveillance was for malaria but there was no mention of Zika.

Even officials at the regional office of National Vector Borne Disease Control Program, which is located in Bapunagar, which was coordinating the sample collection, was not aware that the blood would be tested for Zika.

“The blood was collected in an unlinked and anonymous manner to screen whether we had Zika virus in the community,” said the doctor at BJ Medical College. “Only, when one of the samples tested positive for Zika, we informed the government.”

The samples are given distinct numbers and the names of the patients are removed from the database. Once the results arrive, a numbered sample can be traced back to the patient it belongs to.

Bapunagar, where Zika surveillance was conducted in early 2017 and blood samples collected from residents. (Photo: Priyanka Vora)

One of the samples that did show up as positive for Zika was that from a 22-year-old pregnant woman. Health officials claim that the woman has delivered a healthy child since then.

The Zika virus causes mild fever and rash symptoms in most adults who contract the infection and on rare occasions is linked to the more serious neurological disorder called Guillain–Barré syndrome. However, the most serious risk from Zika virus infection is to pregnant women whose foetuses might be affected. Many children born to women who have contracted Zika have microcephaly, a condition in which the brain is smaller than normal and underdeveloped.

The need to know

There are contradictions among government health authorities about the need to tell people what their blood is being tested for.

JP Gupta, health commissioner for Gujarat in an interview to Scroll.in said that it was the government’s prerogative to test blood samples for Zika virus and that there was no need to inform patients or the local staff about testing for the Zika virus. Gupta also said that the decision to inform the WHO lay with the union health ministry and not the Gujarat government.

Dr AC Dhariwal, director of National Centre of Disease Control, said, “We always tell people, what we are testing their blood samples for. That is the protocol.”

However, Dhariwal refrained to comment specifically about the Zika surveillance exercise in Gujarat. He simply said, “We followed all protocols.”

The Indian Council of Medical Research has tested 36,613 blood samples for Zika virus so far. Dr Soumya Swaminathan, director general of the Indian Council of Medical Research, admitted that none of these patients knew that their blood was being tested for Zika and said that it was not necessary to take informed consent for drawing blood for a Zika test. “We will inform the patients, if the test is positive,” she said. There is no point in scaring people about the implications in the start.”

Bioethics researchers and experts disagree.

Veena Johari, who is a lawyer and member of the ethics committee of KEM Hospital in Mumbai, said that it the duty of the government to inform people about the nature and the implications of the test. “There is a need to take informed consent from any patient and explain the purpose and consequences of the test,” she said.

Dr Amar Jesani, a bioethics and public health researcher, called the government’s exercise of conducting tests without informing the patients an act of deception. “It is the job of the state to educate people,” he said.

“At a minimum communities who are under public health surveillance and the healthcare staff involved in public health surveillance should be aware of not only the type of information or biological samples that is gathered from the them or their communities, they should also be made aware of the purpose for which this activity is being conducted,” said Dr Soumyadeep Bhaumik, international public health specialist and associate editor of BMJ Global Health.

Bhaumik pointed out that the union health ministry has a community level risk communication policy. In a section on health education for community mobilisation the policy notes:

“...massive, repetitive, intense and persistent Behavior Change Communication (BCC) campaign is crucial. The community must be assured that this is a preventable disease and empowered with the knowledge about mode of transmission, vector control options, availability of services in addition to correct treatment, so that timely and appropriate action is taken.” — Annexures VII - Health education for community mobilisation, Action plan for managing Zika Virus Disease

“The government in effect did not implement their own strategy,” said Bhaumik. “Not doing that leads to community mistrust and resistance.”

The director of the Central Health Education Bureau Dr Niraj Kulshrestha said that his office is only now in the final stage of preparing the risk communication strategy for Zika. Kulshrestha’s office in the policy has clearly said that following the detection of Zika, the community needs to be informed about safe-sex practices as Zika is also a sexually transmitted disease.

In the defined area witnessing active Zika virus transmission, it will be ensured that all people in the reproductive age group, having sexual activity receive information about the risks of sexual transmission of Zika virus disease. — Ministry of Health and Family Welfare's action plan on managing Zika virus disease.

International concern

India also kept the international health community in dark about for more than four months.

Bioethics researcher Rhyddhi Chakraborty in the United Kingdom said that the delay in informing WHO about Zika virus infection in India raises several difficult ethical question. “If, in India, Zika virus disease takes the form or even half of the form that it had taken in Brazil and other countries, will the officials or government take the liability of the spread of the infection?” she asked.

As per the International Health Regulations, which India is a party to, a country is obligated to notify the WHO of any public health event that may constitute a Public Health Emergency of International Concern within 24 hours of assessment of public health information.

The WHO had declared Zika a Public Health Emergency of International Concern in February 2016 during the height of the outbreak in Brazil and clusters of microcephaly cases linked to Zika infection in pregnant women. WHO declared an end to the emergency in November 2016 and Zika was no longer classified as a Public Health Emergency of International Concern.

In India, laboratories confirmed the first Zika case in India on January 4 and the informed the World Health Organisation more than four months later on May 15. The WHO made the information public on May 26. Since January, residents of Bapunagar were did not know that there was Zika virus in the community. The virus is spread through the bite of the Aedes mosquito and through sexual transmission but the community was unaware that they should have taken additional precautions to prevent its transmission.

Public health specialist Sylvia Karpagam said that the government put people at risk. “A woman, who may have contracted the Zika virus in India, may transmit the infection it to her own community through mosquito bite,” she said. “If she is pregnant, her child may suffer congenital defects. She may also spread it to her partner as Zika is also known to spread sexual route.”

Karpagam also pointed out that doctors in the community treating people for fevers would have failed to look for Zika, since they did not know about the threat.

“People have the right to know,” said R Srivatsan, a public health specialist at the Anveshi Research Centre for Women’s studies. “Not only patients whose blood was being taken but also those living in Bapunagar need to know that they are at risk of contracting Zika and they also need to know the precautions, they need to take.”