Data Surveillance: Cause for Concern

December 23, 1999

[Guest editorial submitted to 6 Wisconsin newspapers December 23, 1999. As of the date posted, it had been published by Green Bay, Wausau, and Wisconsin State Journal.]

As the remaining days of the 20th century grow short, it behooves us to stop, draw a deep breath and take stock of the past 100 years.

Undeniably, the emergence of electronic, digital and imaging technologies represents one of the most dazzling accomplishments of the century.  Computers and the Internet have virtually transformed the landscape of human interactions. It’s whiz-bang stuff!!  Government, like the private sector, has embraced new information and imaging technologies as an elixir of efficiency, cost effectiveness and enforcement.

But as Wisconsin’s first (and only) state Privacy Advocate and the current Director of the ACLU of Wisconsin’s Data Privacy Project, it is my job to examine whether technology is becoming intrusive.  One such use of technology that merits close attention is data surveillance by the government.

Don’t get me wrong:  Government has collected information since colonial days.  Land ownership and public health records, for instance, have served the public interest for generations.  However, the computerization of record-keeping systems allows vast data repositories of personal information to be collected and then electronically consolidated, integrated, cross-tabulated and disseminated in ways unthinkable 40 years ago.

Relying on such capabilities, databases have become the quick fix for society’s ills…but at great hidden costs! State and local government registries now contain data touching many aspects of our lives:  cervical and breast cancer, sexually transmitted diseases (STDs), HIV/AIDS, induced abortions, artificial insemination, elder and child abuse, gang affiliation, hand gun ownership, sex offenses, custody decrees, child support, sudden infant deaths, out-of-wedlock births, police encounters, to name but a few.

Here in Wisconsin the ‘rush to registries’ has continued unabated.

In the last biennial budget alone, two new state-level reporting systems were unveiled: pesticide sales and use reporting system and a birth defect prevention surveillance system.

Of even greater concern is the Federal government’s involvement in data surveillance and profiling.   In the last few years Congress has promoted a national reporting system on elderly homebound patients, created an interstate registry of childhood immunizations, and allocated $70 million to identify and track all infants born with birth defects over a 5 year period.

Under the last proposal, doctors must immediately report the name of any baby born with an "adverse birth outcome" by race and gender with regular medical reports on mothers and babies added to the database.

The Veterans Administration maintains a twins registry.  The FBI administers a nationwide fingerprinting system.  Prominent politicians have advocated a national registry of child care workers.  Recently, Congress narrowly defeated a plan to create a national database of voters, including Social Security Numbers, ostensibly to reduce voter fraud.  A new DNA registry has also been introduced.  Although this database has been instrumental in freeing dozens of incarcerated individuals, the use of genetic information threatens basic democratic principles if it becomes mandatory or is used for purposes other than disease and crime detection.

And the list goes on.  In 1996, after intense lobbying by outcomes researchers and health managers, Congress enacted legislation facilitating the widespread exchange of confidential health information. Implementing such a nationwide health data network would require a universal patient identifier to track health encounters of every American over distance and time.  Fortunately, early support for the Social Security Number as the patient identifier withered under a storm of public protest.

Probably, the granddaddy of all recent federal databases is the ‘new hires’ reporting system.  Conceived as a efficient way to hunt down ‘dead beat’ parents, this newly created computerized directory identifies every person who is hired by every employer in the country.  Not surprisingly, Congress has recently considered using this gold mine of data to snare illegal immigrants, students delinquent in their educational loans and other ‘misfits’ in modern society.  To coin an overused cliché, this represents a slippery slope.

I am not techno-phobic. I do not allege that government officials are processing data outside the law.  I do not believe the US is being invaded by black helicopters.  However, I have grown concerned over the use of powerful computer applications - by the public and private sectors alike - to track, monitor, profile and target individuals for a growing panoply of reasons that range from marketing to malfeasance.

In my opinion these concerns should move to the front burner of public debate.  To encourage and guide such a debate, the following questions should be raised:

• What are the intended - and unintended - consequences of government’s growing data collection activities?

• Should government be obligated to inform citizens whenever their name and other identifiers are added to a reporting system or registry?

• Should permission be sought from individuals before their descriptors are reused or re-released for secondary purposes (as is often done in the European Union.)

• Should a state privacy office be restored where citizens can lodge complaints, receive advice and review their own records?

• Should agencies be obligated to register all databases containing personal information or, at a minimum, be required to publish an annual index of all personal records maintained on paper or in electronic format?

These questions have not received much attention, because to date, electronic surveillance has supposedly focused on society’s undesirables:

‘dead beat’ parents, illegal immigrants, tax cheats and loan delinquents.  At some point will information technology be used to tag and track individuals who either cost or inconvenience modern society . . . like smokers, risk-takers, potentially troublesome teenagers, recipients of public assistance, the mentally ill?

To insure this does not occur, safeguards must be in place that enhance transparency, promote accountability and instill high standards of fair information practices.

These safeguards are critical, because taken individually, each registry and reporting system appears to be beneficent and wholly reasonable. But left unrestrained, the information brokers of today may become the power brokers of tomorrow.  And that would have serious implications for privacy and other civil liberties!

Perhaps the US Privacy Protection Study Commission said it best back in 1977 when it cautioned:

The real danger is the gradual erosion of individual liberties through the automation, integration and interconnection of many small, separate record-keeping systems, each of which alone may seem innocuous, even benevolent, and wholly justifiable.

Carole M. Doeppers, Director
Wisconsin Data Privacy Project
122 State Street, Suite 407
Madison, WI 53703