How to monitor the vaccinated while addressing privacy concerns
There is a great deal that public health authorities can learn if proper data are collected about the effects of the first anti COVID-19 vaccinations. Unfortunately, the data needed are quite extensive and personal. Privacy advocates are sure to raise objections. The solution is not to curb the necessary collection of health information but to institute effective oversight measures.
Health experts point out that it is crucial to monitor who is inoculated because the vaccine’s approval has been rushed and, in the past, we found out that medications that seemed to be safe when administered to small groups were not so when they were administered to the masses. Widespread tracking is also needed to learn about side effects and how different populations – races, age groups and so on – respond to the vaccines; whether two doses are enough; how long the immunity lasts; and whether those who have been vaccinated are also prevented from being carriers. Moreover, compliance studies show that people need to be reminded to take the second, booster shot.
The vaccines are administered by different agencies across the U.S. In some states, they are provided by CVS and Walgreens, in others by hospitals. Different authorities are responsible for data collection (if there is any). So far, the Centers for Disease Control and Prevention (CDC) has not issued a required set of information that all those who receive the vaccine need to provide. We know from past efforts that attempts to form national vaccine registries have failed.
The stakes are so much higher this time that one must hope that at least some large states will collect the needed data and provide it to the CDC, as well as to epidemiologists and other medical researchers. Japan, South Korea and Australia already have vaccine registries. However, in the U.S. some, including the executive director of the American Immunization Registry Association, Rebecca Coyle, argue that members of the public could be less inclined to be vaccinated if doing so means that the federal government would gain access to their personal information. Privacy advocates are sure to be quite alarmed as they have been in the past about less intrusive data collection, as medical information is particularly intrusive.
A different but related issue is whether to issue certificates to those who have been vaccinated. If it becomes clear that vaccinated people cannot be carriers, such certificates might allow vaccinated people to move around freely in areas that are otherwise under lockdown and to travel freely by air and other modes of public transportation. Employers are sure to prefer to retain such people, especially those employers that require in-person work and those that are eager to get their employees back in the building.
To reassure the public, once in office, President Biden should direct his coronavirus coordinator, Jeff Zients, to appoint a panel of privacy advocates and health care officials with the specific task of ensuring that the various privacy protection rules written into the HIPAA law – which have proven quite effective in protecting medical information – apply to the information about vaccines. This is especially needed as the HIPAA law specifies which facilities must abide by the particular requirements of the law, which may not cover all those that may administer the vaccine and that will need to collect the data. Moreover, the panel should provide a 1-800 line for people to use to report all indications that privacy is not heeded. The HHS inspector general should review these arraignments and issue a public report detailing whether they find any violations.
One hopes that such assurances will reassure members of the public. Many are already hesitant about being vaccinated, and hence steps must be taken so that they will not be driven away by the need to share personal information; information that is badly needed to promote the effectiveness and safety of the vaccine for all groups.
Amitai Etzioni is a university professor and professor of international affairs at The George Washington University. His latest book is “Reclaiming Patriotism.” Please visit his new platform for discussion, CivilDialogueS.org.