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Fears of privacy breach in release of patients’ data
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he government’s plan to release COVID-19 patients’ personal data for preventive measures has received a lukewarm response, with a public policy expert calling it worrisome and unnecessary.
“Personal health data is a very sensitive data that should the government release one patient’s data, it might lead to him or her being subject to discrimination by the rest of society,” Institute for Policy Research and Advocacy (ELSAM) deputy director Wahyudi Djafar told The Jakarta Post on Tuesday.
He was referring to a plan by the national COVID-19 task force to release patients’ personal data in an effort to encourage adherence to health protocols in affected areas. Task force chief and National Disaster Mitigation Agency (BNPB) head Doni Monardo said such data would only be made available to people living in the patients’ neighborhoods.
"Current regulations don't allow authorities to publish patient data. But if this data could be known by people living in their neighborhoods, it could help the surrounding community prepare preventive actions," Doni told a hearing with House of Representatives Commission VIII overseeing social affairs on Monday, as quoted by kompas.com.
While suggesting that such data should be published for the sake of public safety, Doni asked people to stop stigmatizing COVID-19 and condemned unjust treatment of people with the illness.
Constitutionally, the state is required to protect people’s privacy and personal data. However, the country has never passed a specific law on personal data protection to enumerate the rights of data owners and establish what kinds of data are legally considered personal.
Wahyudi said the protection of an individual’s personal data was guaranteed under Article 28G, section 1 of the 1945 Constitution. Furthermore, patients’ health data is also protected under multiple laws including Law No. 36/2009 on health and Law No. 29/2004 on medical practice.
He insisted that disclosure of personal data could be lawful only upon approval by the data subject, when such disclosure is necessary in order to protect the vital interests of the data subject, or when such disclosure is requested by the law.
Nevertheless, he added “Based on the existing current laws, it is still impossible for the government to publicize COVID-19 patients’ data under any circumstances, even for emergency situations”.
The publication of the country's first two COVID-19 patients' personal data did in fact result in privacy breaches and threats. Fear of stigma and ostracism has prevented many people in the country from being tested for COVID-19.
Wahyudi said it would be enough for the government to only give a hint in certain areas with high risk of COVID-19 transmission so that *deleted* residents could prepare for preventive actions.
“Data publication can be also done without profiling the patients. The government can simply just share the information about areas with high risk of COVID-19 transmission so that people could avoid such areas within certain periods,” he suggested.
“By profiling the name and the address of the patients, the government will directly stigmatize and discriminate them,” he said, while adding that the disclosure of patients’ personal data would worsen the negative stigma and heighten residents’ rejection of COVID-19 patients.
