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Excerpted From: Christian Powell Sundquist, Pandemic Surveillance Discrimination, 51 Seton Hall Law Review 1535 (2021) (68 Footnotes) (Full Document)
The COVID-19 pandemic has laid bare the abiding tension between surveillance and privacy has been laid bare. Public health epidemiology has long utilized a variety of surveillance methods--such as contact tracing, quarantines, and mandatory reporting laws--to control the spread of disease during past epidemics and pandemics. Officials have typically justified the resulting intrusions on privacy as necessary for the greater public good by helping to stave off a larger health crisis. The nature and scope of public health surveillance in the battle against COVID-19, however, has significantly changed with the advent of new technologies. Digital surveillance tools, often embedded in wearable technology, have greatly increased the ability of governments and private corporations to monitor large sections of society while collecting massive amounts of personally identifiable data from millions of persons around the world--often with little to no regulatory oversight (or legal limits) on how that information may be later used. Surveillance responses to public health crises have also historically disproportionately targeted racialized communities, leading to a normalization of both racial discrimination and inequality.
The world certainly must use all means to end the devastating COVID-19 pandemic. We also need to be careful, however, to not undermine individual privacy rights or engage in racialized responses to the current crisis. This Essay examines the discord between public health surveillance and privacy rights and argues that the bio- surveillance technologies being used to respond to the COVID-19 pandemic--such as contact tracing apps, GPS ankle monitors and other wearables, the collection of cell phone location data, genomic testing, and targeted quarantines--can potentially exacerbate discrimination against racial minorities and immigrants. The Essay concludes with legal and policy solutions on how to utilize public health surveillance tools to prevent the spread of COVID-19 while guarding against privacy violations and racial bias.
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The “enduring tension” between public health surveillance and privacy creates a dilemma for our COVID-19 response. How can we balance the need for public health surveillance measures with the strong likelihood that such measures may be applied in a racially discriminatory manner? How can we protect the privacy rights of racialized communities while remaining committed to critical public health measures such as contact tracing, quarantines, and expanded COVID-19 testing?
We might begin by recognizing that both privacy and nondiscriminatory public health surveillae can co-exist. Protecting individual privacy rights is often essential to protect the public health from disease threats in that, without such rights, people may refuse to share information with the government that could assist with its pandemic response and contact tracing. We can see this in racialized communities' heightened mistrust of COVID-19 public health measures [such as vaccines), given our history of racially disproportionate health and law enforcement surveillance. But we must also recognize that our current sectoral approach to privacy is ill-suited to protecting privacy rights and guarding against discrimination in a pandemic: we have a mish-mash of privacy laws and regulations ranging from consumer protection, to education privacy, to medical privacy, and everything in between. Our HIPAA and Genetic Privacy laws, as discussed earlier, are woefully inadequate to respond to the privacy concerns raised by modern technology. A national omnibus approach to privacy could fill some of these gaps, for example, by ensuring that health data information is protected even when collected by an actor that is not a HIPAA entity or “business associate,” as well as by creating meaningful biometric information privacy laws. Two recent legislative proposals are promising, and yet limited in their scope. The COVID-19 Consumer Data Protection Act, sponsored by Senator Roger Wicker and others, is much too limited to respond to the racial privacy issues implicated by the pandemic-- creating broad exceptions for employer-based surveillance and including no enforceable private right of action. The Public Health Emergency Privacy Act, sponsored by Senators Richard Blumenthal and Mark Warner, is more promising in that it requires opt-in consent, data minimization, limits on disclosure to government actors, restrictions on the commercialization of health data, nondiscrimination provisions, and a private right of action. And yet it contains very broad exceptions for contact tracing and information maintained by HIPAA entities.
A federal omnibus approach to privacy must coalesce around clear privacy norms and values while being guided by racial justice principles that normalize access to vaccines and health care. A race-conscious approach to COVID-19 privacy would share many common features: opt-in consent; anonymization of data to prevent re-identification; private rights of action to ensure the enforceability of privacy violations; norms of proportionality, transparency, and data minimization; strict limitations on how such data may be used (including provisions that prevent the sharing of health surveillance data with law enforcement and immigration authorities, and restrictions on the commercialization of private data); and the creation of a robust nondiscrimination policy (such that health data could not be used to deny health insurance, employment, education, and other social benefits). But this approach will be limited in its protection against racialized surveillance unless COVID-19 enforcement powers are removed from law enforcement agencies and placed in the hands of public health authorities. With these guiding principles, we can begin creating new laws to prevent health surveillance from becoming a system of entrenched racialized surveillance and exploitation.
Associate Dean of Research and Scholarship and Professor of Law, Albany Law School.
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