Features

A shot in the arm?

National | Parents fear government databases undermine privacy and could lead to discrimination

Issue: "The politics of grace," April 25, 1998

(in New Orleans) - For more than a year Dawn Richardson, a mother who advocates vaccine education, had testified before Texas Senate committees and worked with legislators to maintain the rights of parents to be excluded from any state medical databases. She was concerned that if the registry were not consent-only, it could be the starting point for the collection of all kinds of medical information that might lead to automatic denial of HMO or insurance coverage for some families. Her concerns deepened on March 23-three days after the public-comment period ended for the proposed database rules-when, on a whim, she decided to place a phone call to the Texas Department of Health (TDH) and discovered that a registry was already up and running. One more call later that day and she discovered that her own child was included, even though neither Mrs. Richardson nor her husband had granted permission. She also discovered that when she merely gave officials over the phone her child's name, birth date, and address, medical information about her child was faxed to her home. According to Brad Bullock, a staff attorney in state representative John Shields's office, such unauthorized release of medical information is illegal, since Mrs. Richardson had not signed a release form. After conducting other spot checks, Mr. Bullock announced that "in several documented instances this week, individuals obtained confidential immunization information over the phone with only a child's name and birth date." After legislative inquiry from two state senators' offices, TDH released information acknowledging that Texas had accumulated more than three million names of children for its immunization registry since 1994. Twenty-eight other states have accumulated similar information, and the remaining 21 have begun the process to reach that end. To establish compliance with state law, TDH officials would need to have an equivalent number of consent forms on file verifying authorization for inclusion in the registry. However, until the first week of April, after having collected names for four years, the department did not even have an official consent form that could be filed. TDH officials Diane Simpson and Vicki Cowling acknowledged that their organization has acquired more than half a million names from birth certificate information, a practice they said ceased last year when some parents started lodging complaints. The immunization information could be added later after assigning an Immunization Tracking (ImmTrac) Identification number to each child, though Dr. Simpson said she was not aware of the ImmTrac IDs until she was told of them in early April. Ms. Cowling said she was surprised by the reactions of the parents, although she admits the public hadn't been made aware of the database: "We don't know where this [concern] is coming from. We've been collecting data since 1994 and no one has ever questioned us about it before. We're just trying to help people." Some parents want information about the possible risks of some immunizations in relation to benefits. Based upon the recommendation of the American Academy of Pediatrics, state laws around the country are mandating that all newborns receive the hepatitis B vaccine. Hepatitis B is a disease (like HIV) that is primarily contracted from a handful of risky lifestyle choices like sex with an infected person or sharing dirty drug needles. Some parents feel their children are not included in these risk pools and, because the vaccine carries some risks-as do all vaccines-they would prefer not to give it. These risks become difficult for some parents to ignore when they consider that the National Vaccine Injury Compensation Program has paid out nearly a billion dollars in verified damages since 1986. An immunization tracking system could leave parents who make a personal choice about vaccines subject to harassment by some state health authorities. And some parents are concerned that a statewide-and a possible national-computerized tracking system could lead to eventual discrimination by HMOs and insurance carriers. On April 6 in New Orleans, the federal Centers for Disease Control sponsored a national meeting in which representatives from the CDC, pharmaceutical companies, HMOs, and computer companies discussed data bank issues, including those involving privacy. During public comment periods, parents voiced concerns about the potential database abuses. But C. Peter Waegemann, executive director of Medical Records Institute, which helps government agencies establish registries all over the world, argued that any opportunity for parents to opt out of this system would undermine the entire project. Agneta Breitenstein, director of the Health Law Institute in Boston, noted the legitimacy of concerns for those who don't wish to be included: "There are three things that are always true when registries are created: One, there will always be more information collected than is needed to complete the task; two, it will always be kept longer than we are told; and, three, it will always be used for purposes other than intended." Mr. Edwards is a Texas journalist and staffer in the state legislature.

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