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Back Among their complaints:
Parents who want to make informed health choices are facing new hurdles, a four-month Gannett News Service investigation of federal immunization policy shows. With 104 new vaccines in the research pipeline, the possibility that genetically engineered DNA vaccines can be dropped in your child's mouth at birth and children may be vaccinated even before birth in the womb, some consumer advocates and lawyers are warning that parents need to be aware of their shortcomings as well as their promise. ``The people of America have never been asked if they want anyone to tag and track their movements from state to state and be privy to the details of their health-care choices without their informed consent,'' said Barbara Loe Fisher, president and co-founder of the National Vaccine Information Center in Vienna, Va., a 16-year-old consumer group started by parents whose children were injured or killed by vaccine reactions. ``What American citizens from all walks of life are telling us is that they don't want Big Brother breathing down their necks and telling them what health care choices to make,'' Fisher said. ``They are tired of being forced, without their informed consent, to use every vaccine the drug companies produce and public health officials decide to mandate.'' Most state laws require children to receive 34 doses of 10 different vaccines before their fifth birthday. Although the shots are required to attend daycare and public schools, receive health insurance and get basic social services in most states, all states allow certain exemptions. Medical exemptions exist in every state, philosophical exemptions in 16 states and religious in all except two -- Mississippi and West Virginia. In some states, religious exemptions are narrowly defined to include only those religions that have doctrines specifically opposed to immunizations. Only two fall into this category: Christian Scientists and Dutch Reformed, the religion of the Amish people. ``We argue that those religious exemptions are inherently unconstitutional,'' said attorney Christopher Klicka, senior counsel for the Virginia-based Home School Legal Defense Association. ``The First Amendment, the right to freely exercise religious belief, also protects personal religious beliefs which do not have to be shared by a denomination or religious sect.'' But all religious exemptions soon may be threatened if the American Academy of Pediatrics' Committee on Bioethics has its way. Last year the committee put forward a magazine article calling for the repeal of religious exemption laws for medical treatment. It says parents who deny medical care that would prevent death or harm to their children should be held legally accountable, guilty of child neglect. The academy's article is unclear to the extent that this applies to immunizations, stating only ``The AAP does not support the stringent application of medical neglect laws when children do not receive recommended immunizations.'' A July 1996 order from President Clinton to Health and Human Services Secretary Donna Shalala called for a national immunization network, which proponents say would electronically track children's immunization records to help reach a national target of immunizing 98 percent of 2-year-olds. For children behind in their shots, ``reminders'' such as phone calls and postcards would be issued. Reminders also could include home visits, the Centers for Disease Control said. Proponents of the databases said state-linked databases could also provide opportunities for scientific study. Currently, no comprehensive federal law exists that protects the confidentiality of immunization data, despite the concern of privacy advocates. So information collected from children's medical records, including birth records and Social Security numbers, could be accessed or linked with other information, such as employment and financial information currently indexed with the Social Security number. Consequences of this could include nonimmunized or underimmunized people being barred from getting insurance coverage, a driver's license, a job, state or federal tax deductions, welfare payments, or admission to a hospital, hotel, or airplane. In 1995, Shalala quietly signed an order allowing the Social Security Administration to release Social Security numbers from all newborns to states to establish these databases. ``The people never voted in 1995 to allow government health officials to routinely appropriate children's Social Security numbers, without the informed consent of their parents, so vaccine tracking registries could be set up in half the states,'' Fisher said. It is almost a fait accompli. As of September 1997, a CDC survey showed that 64 federal immunization project grants have been made covering all 50 states, and 36 projects have operational registries with one or more sites routinely providing data to a central database. The CDC says the main goal of the computer registries is to bring the 78 percent immunization rate for 2-year-olds up to 90 percent by the year 2000. Privacy advocates are suspicious of the need for all this. The CDC's own July statistics show the national coverage for the recommended vaccines are the highest ever recorded, with four of the vaccines surpassing the 90 percent goal, and kindergarten-age kids already at a 98 percent immunization rate. ``There is no compelling need for a national database of any kind,'' said David Banisar, legal counsel for the Electronic Privacy Information Center, one of the top privacy advocate groups on Capitol Hill. ``I don't see why people have to see the names of all the country's children listed in any particular place. ``This is all part of their effort in the federal government to create a cradle-to-grave national database of medical information which ties to a national ID number.'' A.G. Breitenstein, director of the Health Law Institute, an advocacy group based in Boston, warned at a CDC-sponsored national meeting in New Orleans in April that even well intended databases can go awry. ``There are three things that are always true when registries are created,'' Breitenstein said. ``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. Three, it will always be used for purposes other than intended.'' Dr. Alan Hinman, a former CDC immunization official, said privacy and confidentiality will be assured, and the prime goal of the program is to ensure children are immunized on time. ``I think most of those concerns are exaggerated,'' Hinman said. ``There are guidelines on privacy and confidentiality to ensure access to information and there is a proper security system.'' Even so, the registries that have been set up are already fast at work. When John and Karen Olinger of Hugoton, Kan., members of the Mormon faith, were told that two of their children had to get a Hepatitis B vaccine to stay in school, they went straight to their family physician for a medical exemption. Four of their six children had bad reactions to the other childhood vaccines, and remain highly allergic to many foods and chemicals. Their doctor agreed that their son, 6, and daughter, 11, were at low risk for Hepatitis B, a disease often contracted through sex and needles. But when he advised the father to question the necessity of the shots, the doctor was told by state officials his license was in danger if he started signing medical exemptions to vaccinations. When the father tried to cite a religious exemption, the school nurse responded, ``The state says the First Amendment doesn't count, public health does.'' After a long fight, the school board finally allowed the Olingers a religious exemption. In Spearfish, S.D., a community of about 10,000 in the Black Hills, a state vaccine tracking database tipped off the state health department that Karla and Michael Weber's son Cole, 8, had not received all his vaccines. Both Cole and younger brother Cade, 4, had severe reactions to earlier shots, some of which linger. The Webers made a decision not to vaccinate. Their pediatrician agreed, issuing a medical exemption. The Webers also had a religious exemption filed with the school. But the state didn't accept either, saying the Roman Catholic Webers had to be either Dutch Reformed or Christian Scientist. The Catholic diocese backed up the family, but school officials held fast. The Webers were forced to pull Cole out of school and home school him instead. ``The bottom line is when it comes to informed consent, you are supposed to make an informed decision,'' said Karla Weber. ``Informed consent, at least in South Dakota, is forced.'' In 1995, the Texas health department set up a computer tracking system, boasting in state literature that: ``Most children are not fond of receiving shots ... if those kids reside in Texas, they're finding out there's no longer anywhere to hide.'' Last year, parents and state politicians concerned about privacy successfully lobbied for an amendment requiring parental consent to enter a child in the database or release information from it. Dawn Richardson, a Texas mother and parental rights advocate, discovered that her own daughter's records had been entered without her consent and her and her husband's Social Security numbers had been listed in the registry. With legislative support, Richardson got the law changed to put the burden of action on the state to require written consent. She now is waiting for the health department to re-write the rules. Meanwhile, many parents are in the dark. Each year, 20 million children receive some type of required vaccine. The National Childhood Vaccine Injury Act passed by Congress in 1986 required parents be given an information sheet listing the risks and benefits of each vaccine. But, the two-page information sheets from the CDC mentions only that severe reactions are ``very rare'' and that experts disagree on whether pertussis vaccine -- considered the most dangerous of childhood shots -- causes lasting brain damage. ``The CDC handouts on pertussis say we still don't know if pertussis can possibly cause any permanent damage and if it does, it is very rare,'' said attorney Peter Meyers, director of a clinic on vaccine law at George Washington University. ``Well, the vaccine program has compensated hundreds of families for permanent damage caused by pertussis vaccine. I don't' know how you can realistically say today that it might or might not ever have caused permanent damage.'' Meyers said the government purposely gives out biased and incomplete information so parents will not be discouraged from vaccinating their children. ``There is a downside to increased facts,'' acknowledged said Dr. Neal Halsey, director of the Institute for Vaccine Safety at John Hopkins University. ``If given a decision, more will turn the vaccine down.'' The sheets don't tell parents that certain exemptions exist if they feel the risk from the vaccine outweighs the risk of the disease. ``The CDC handout does not inform parents of these exemptions,'' Meyers said. ``Parents are not being told that in many states the law currently allows people to avoid mandatory vaccination. I don't think that it is an accident that people are not being told that exemptions exist.'' Some parents have charged the government with sacrificing individuals for the ``common good,'' a concept that Fisher of the National Vaccine Information Center complains is contrary to a post-World War II code of ethics referred to as the Nuremberg Code. The Nuremberg Code was developed after scientific experiments were carried out by the Germans on individuals who were physically or mentally handicapped, or suffered serious diseases. ``The first principle of the Nuremberg Code is, `The voluntary consent of the human subject is absolutely essential,' '' Fisher said. ``This means that the person involved should have legal capacity to give consent ... and should have sufficient knowledge and comprehension of the elements of the subject matter involved as to enable him to make an understanding and enlightened decision.'' Scientific studies usually quoted by vaccine safety advocates have shown that one in 62,000 children who receive DPT will suffer serious brain injury. The CDC also says that about 8 to 10 people a year will contract polio from the oral polio vaccine. ``Are we going to be the kind of society that is willing to regard each member as expandable in the service of the common good?'' asks David Walsh, an ethics and political science professor at Catholic University. ``Or are we going to be the kind of society that defines the common good precisely in respect for the inviolable and infinite dignity of each individual. ``The Bill of Rights is a guarantee that no one can be
sacrificed for the benefit of any other, even for the greater social good of all
others. What then is left of a universal immunization program if compulsion
cannot ultimately be exercised?'' |
