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September 8, 1998 Robert D. Crider, Jr., M.S., M.P.A. Subject: Public Comments on the Proposed Rules for Implementing a Statewide Childhood Immunization Registry. Dear Mr. Crider, I am submitting this letter in response to TDH’s request for public comments regarding its latest proposed rules for implementing HB 3054. I request that this letter be made a part of the public record and that you respond in writing to my comments. By this point in time you are well aware of the many concerns and objections parents have to the proposed rules. Many of my concerns arc the same. My greatest concern however is the lack of trustworthiness of your division and possibly the department as a whole. T have been working on this issue for over a year, and have witnessed numerous attempts by TDH, specifically the immunization division, to mislead the legislature, physicians, insurance companies, and the public about the function and purpose of the registry. Based on the past behavior of your division, it greatly concerns me that the consent portion of the law still seems to be beyond your comprehension. In the preamble to these rules you state that forms to decline participation in the registry will be provided to physicians. It would seem that by now, after all the letters and meetings, that the meaning of a consent only system would be very clear. There is no need for a record of anyone who declines. Only the information of those who consent should be of concern. Since January 1, 1998, consent for the registry has also been part of the birth certificate. This must be stopped. Adequate information about the registry is not provided, and this forces families not wanting to be part of the registry to decline. If TDH feels it is necessary to obtain consent at birth, then there should be a separate form explaining the registry which can be signed and returned directly to the immunization division. There is no need for this consent or non—consent to be tied to a permanent record such as a birth certificate. Assuming that consent is properly addressed, lack of trust in your division causes me to question the ability of TDH to maintain the records collected in a secure manner. I cannot be sure the immunization division respects consent or the right to privacy, since you have taken BVS data without consent and released it without proper verification of those requesting it. In March of 1997, when I became aware of HB 3054, my goal was to amend the law to allow for consent and not create a mandatory system. I felt that this would be an adequate safeguard of a family's right to privacy. However, after spending the last nine months working with your division and the rules, I have come to the conclusion that the only true safeguard would be to repeal HB 3054 and have no registry at all. The public trust of your division will always be at minimum until you learn to do things with people, instead of for them. Sincerely, |
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