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CCHF questions patient privacy in state data registries

By Patrick Ouellette

- The Citizens’ Council for Health Freedom (CCHF) recently released its “Patient Privacy and Public Trust: How Health Surveillance Systems Are Undermining Both” report and looked into how different states handle patient data collection, perceived risks for those patients and some HIPAA misconceptions. The project was started back in 2005, more than eight years ago, but in that time CCHF was able to pull some unique data from the 50 different states.

The report opines that since states vary greatly in their collection of data and private data is routinely collected without patient consent, they are blindly letting specific, private information such as Alzheimer’s disease or Autism data be put into state registries that they have no control over. The CCHF report explored the issue of government health surveillance by reviewing four state health data systems, all of which are found in all or most of the 50 states and D.C., and most have received federal funding:

- Birth defects surveillance systems

- Cancer registries

- Newborn screening databases

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- Vaccination/Immunization registries

To build these four patient tracking systems, CCHF argues that Congress, state legislatures, and state officials have dismissed three pillars of patient privacy protection:

- First, they have forced doctors and hospitals to either report private patient data or open up patient records to government inspectors for data collection. This violates the consent and confidentiality requirements of the Hippocratic ethic and, therefore, the professional obligation of physicians and other health care professionals to patients.

- Second, the legal right of consent for accessing and using private data has often been replaced by the option of dissent. Under dissent laws, patients and parents are not asked whether their information can be used.

- Third, constitutional rights against government intrusions, including the seizure of private property and personal information, have been widely ignored. 12 For example, the Fourth Amendment says:

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“The right of the people to be secure in their persons, houses, papers, and effect, against unreasonable searches and seizures, shall not be violated, and no Warrants shall issue, but upon probable cause, supported by Oath or affirmation, and particularly describing the place to be searched, and the persons or things to be seized.”

CCHF includes background, funding, uses, example of data collection, controversies and charts of applicable state statutes and rules for each state health data system. The organization weighed the benefits of each of the four data registries against some controversial findings:

1. Vaccination Registries

State vaccination registries, or immunization information systems (IIS), don’t seem to be an issue on the surface, as a 2000 report by the CDC said that 11,000 children born each day receive required vaccinations against vaccine-preventable diseases. But these registries have concerns as well:

Concerns have included the collection and use of the data by health officials; the creation of lists of those who refuse vaccinations; the use of clinic vaccination rates to score the performance of doctors; the use of such scores to financially penalize doctors, and the potential refusal of health plans to cover an unvaccinated or under-vaccinated individual.

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2. Cancer Surveillance

CCHF says that there are two types of cancer data collection in Washington State. The Fred Hutchinson Cancer Research Center’s cancer surveillance system captures cancer data from the 13 counties surrounding Puget Sound and sends it to the state cancer registry. Outside the Puget Sound area, cases are submitted directly to the registry. Washington’s state cancer registry collects cancer data from hospitals, other health care facilities, ambulatory surgical centers, pathology laboratories, freestanding radiation and oncology centers, medical clinics, and health care providers.

Controversies include the registration of cancer patients in government tracking systems without their consent. These are the following four issues could emerge as patients become aware of the surveillance systems:

- Research without patient or parent consent

The most universal and generally used patient identifier in the registry is the patient’s name, with “lifetime follow-up” considered “an important aspect of the cancer registry.” The CDC reports various research functions using patient data in cancer registries:

- Determining cancer patterns in various populations.

- Setting priorities for allocating health re­sources.

- Advancing clinical, epidemiologic and health services research.

- Providing information for a national data­base of cancer incidence.

3. Birth Defects Surveillance Systems

According to the report, the information in birth defects registries is often paired with studies of genetics, molecular biology, etiologic investigations (investigations on the cause of the disease), and environmental exposures. When paired together, registry proponents claim this information may eventually uncover the causes of birth defects, reduce infant morbidity and mortality, and prevent future causes.

Birth defects registries have generated various concerns, including the lack of parent consent. Another concern discovered by this study is the possible inappropriate collection of data. For example, Florida has identified approximately 70,000 infants with a major birth defect between 1998 and 2007; however, the state registry contains demographic and clinical data for at least 2,135,000 live births. Another concern surrounding birth defect surveillance systems is the presumption that government patient-tracking systems can be established without legislative authority:

“Although most states have established such registries through legislative action, it is not always required and some states may be able to establish a registry through rulemaking, generally by adding birth defects to a list of information that the state health department tracks.”

As seen with cancer and vaccination registries, there is also a concern over creating child health profiles by linking birth defects data with other government surveillance systems. The National Office of Public Health Genomics says the purposes of birth defects surveillance systems are:  “…best accomplished through surveillance systems that use multiple data sources, have accurate and precise diagnostic criteria, perform timely data analysis and dissemination, use personal identifiers for follow-up and data linkage, and guarantee confidentiality.”

4. Newborn Screening Databases

Newborn screening data consists of identifiable patient and parent demographic details, the child’s dried blood spots on a filter-paper card and the newborn screening genetic test results. This includes genetic test development, biomonitoring and genetic research. And the two ways to collect data in newborn screening are the newborns’ dried blood spots and the newborns’ genetic test results.

Our organization’s discovery of state storage, use, and sharing of genetic test results and newborn DNA has brought forth national issues of consent, privacy, and ownership. Parents in Texas and Minnesota have filed and won lawsuits against state health agencies for government storage, use, and sharing of newborn DNA. Neither state department of health had legislative authority to do so, and Minnesota law specifically forbids unconsented storage, use and dissemination under the state genetic privacy act. Minnesota law also only allowed storage of test results for the children found with a genetic condition, but the Department had created a database of all children tested. On November 16, 2011, the Minnesota Supreme Court ruled that the state may only store test results for 24 months unless parents provide written consent for longer storage.

DNA serves as the unique identifier of each individual. In newborn dried blood spots, the individual’s unique identity, indeed the person’s entire genetic code, becomes available for state dissection, assessment, and exploitation. Consent is also important given the fact that “…collections of surplus, stored samples have become immensely attractive to researchers in medical genetics and the biomedical sciences.”228 The DNA samples have been called a “public treasure.”


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