-Caveat Lector- Forwarded. What relentless bastards. * CCHC Commentary on new federal Birth Defects Registry law * National Libertarian Party Press Release * Federal law citations, sponsors, co-sponsors, and summary * Birth Defect Registry Law in Minnesota - waiting in the wings * 1997 Minnesota Birth Defects Registry Report - quotes of interest * Copy of federal law at http://www.cchc-mn.org/bdact.html CCHC COMMENTARY: "Defective" children have been declared the latest government target. Congress stooped very low in 1998 to enact a nationwide birth defects registry initiative encouraging states to track children by defect and race. This initiative was pushed by the March of Dimes Birth Defects Foundation, which made establishment of state surveillance systems a priority in 1994. Nevada families are now locked in a fight to prevent the system from becoming law in their state. As it stands now the bill A.B. 238 removes not only general privacy protections but genetic privacy as well. It creates a state registry, mandates medical reports onindividually- identifiable babies and mothers, requires reporting of genetic testing, and grants registry access to state officials, researchers, and the state's medical schools. The state's General Assembly (House) passed it easily, but the Senate Health Resources Committee is scheduled to hear it on Friday, April 23. The only defense to such attacks on medical privacy is informed, specific, and voluntary patient and parent consent requirements. On every registry. At every access point. This is the feared monkey wrench which confounds the instigators of these data collection systems. In the wake of Congressional abdication, patient consent is a powerful tool for preserving Fourth Amendment rights, the Hippocratic Oath, professional ethics, and common decency. Twila Brase, R.N. President ----------------------------------------- NEWS FROM THE LIBERTARIAN PARTY 2600 Virginia Avenue, NW, Suite 100 Washington DC 20037 World Wide Web: www.LP.org ----------------------------------------- For release: April 16, 1999 ----------------------------------------- For additional information: George Getz, Press Secretary Phone: (202) 333-0008 Ext. 222 E-Mail: [EMAIL PROTECTED] ----------------------------------------- Libertarians blast government's chilling "deformed baby database" WASHINGTON, DC -- A new federal law encouraging states to build a nationwide, computerized database of infants with birth defects is a chilling proposal that smacks of government eugenics research -- and should be opposed by every decent American, the Libertarian Party said today. "Only a politician with a morality defect would support a database of babies with birth defects," said Steve Dasbach, the party's national director. "This proposal is not only unconscionable, it also opens the door to frightening abuse by the federal government of our most vulnerable citizens -- tiny infants who are already handicapped by genetic bad luck." Under the so-called Birth Defects Prevention Act of 1998, the federal government will provide states with $70 million to identify all infants born with a birth defect, label them by race and gender, enter them into a government database, and track and monitor them for five years. Nevada has become the first state to try to qualify for the federal money: The state legislature is currently debating AB 238, which would require doctors and midwives to "immediately report" the name of any child born with what is termed an "adverse birth outcome" to government health officials. Supporters of the bill claim such a database will allow researchers to better understand the causes of birth defects. But the Libertarian Party opposes the plan, said Dasbach, because the federal government should not be in the "baby registration" business -- especially when it involves parents and infants who are struggling with tragic, possibly life-threatening medical conditions. "On the face of it, this bill is appalling: The whole notion that government bureaucrats will maintain a database of deformed children, or children handicapped by genetic diseases, is repugnant," he said. "Even the language of the bill -- talking about 'poor reproductive outcomes' -- sounds chillingly close to the kind of 'master race' eugenics research done by totalitarian governments in the past." But what's worse, said Dasbach, is the possibility of what the government may do with this information in the future. "Once the government has its database of genetically handicapped children, how will it use that information?" he asked. "Can we trust federal bureaucrats not to use this data to try to control health care costs by pressuring women to have abortions against their will?" For example, he noted, the recent wave of lawsuits against the tobacco industry established the precedent that government has an obligation to try to recover the costs of treating people enrolled in tax-funded health-care plans. "Might politicians mandate genetic testing of children in the womb?" asked Dasbach. "If they discover an incurable defect, would mothers be encouraged to have an abortion? And if parents don't comply, might the government sue them to recover the staggering costs associated with many genetic diseases? Or, if some lifestyle decision by the parents was found to contribute to the likelihood of a birth defect, might the government sue them to recover the costs of treatment? "These are the kinds of questions that must be asked before we give the government the power to track and monitor infants, and put their names in a government eugenics-style database," he said. Of course, if a private hospital or non-profit medical organization decided to do this kind of research with the willing consent of parents, the Libertarian Party would have no objection, he noted. "It is possible that important knowledge could come from such a study; knowledge that might prevent birth defects in the future," he said. "But the way to conduct that research is with the consent of parents, using voluntary contributions, with adequate privacy safeguards, by private organizations with a history of helping children. "That's more safe and more moral than allowing government bureaucrats to intrude into your child's cradle -- and build their chilling, government-mandated database of 'poor reproductive outcomes.' " # # # LAW SPECIFICS: 42 U.S.C.247b-4 Public Law 105-168 Amends Section 317c of the Public Health Services Act S. 419 (Senator Bond) Introduced 3/17/97 Passed 4/21/98 SUMMARY (From Library of Congress): Birth Defects Prevention Act of 1997 - Amends the Public Health Service Act to direct the Secretary of Health and Human Services (HHS), acting through the Director of the Centers for Disease Control and Prevention, to carry out programs to: (1) collect and analyze, and make available data on birth defects in a manner that facilitates compliance with this Act, including data on the causes of such defects and on the incidence and prevalence of such defects; (2) operate regional centers for the conduct of applied epidemiological research on the prevention of such defects; and (3) provide information and education to the public on the prevention of such defects. Requires the Secretary, in collecting, analyzing, and making available data on birth defects, to: (1) collect and analyze data by gender and by racial and ethnic group; (2) collect such data from birth and death certificates, hospital records, and such other sources as the Secretary determines to be appropriate; and (3) encourage States to establish or improve programs for the collection and analysis of epidemiological data on birth defects and to make the data available. Directs the Secretary to establish a National Information Clearinghouse on Birth Defects to collect and disseminate to health professionals and the public information on birth defects, including the prevention of such defects. Authorizes the Secretary, in carrying out programs regarding birth defects, to make grants to and enter into contracts with public and nonprofit private entities. Authorizes the Secretary, upon the request of a recipient of an award of a grant or contract, to provide supplies, equipment, and services for the purpose of aiding the recipient incarrying out the purposes for which the award is made and, for such purposes, to detail to the recipient any HHS officer or employee. Authorizes the Secretary to make an award of a grant or contract only if an application for the award is submitted to the Secretary and the application is in such form, is made in such manner, and contains such agreements, assurances, and information as the Secretary determines to be necessary to carry out the purposes for which the award is to be made. Requires the Secretary to report biennially to the House Committee on Commerce and the Senate Committee on Labor and Human Resources regarding birth defects. Subjects the provisions of this Act to requirements of the Privacy Act. Applies all Federal laws relating to the privacy of information to data and information collected under this Act. Authorizes appropriations. SENATE CO-SPONSORS AND DATE OF SIGN-ON Sen Lott - 03/11/97 Sen Hollings - 03/11/97 Sen Hutchinson - 03/11/97 Sen Cochran - 03/11/97 Sen Kohl - 03/11/97 Sen Inouye - 03/11/97 Sen Moynihan - 03/11/97 Sen Chafee - 03/11/97 Sen Daschle - 03/11/97 Sen Breaux - 03/11/97 Sen Helms - 03/11/97 Sen Wyden - 03/11/97 Sen Kerrey - 03/11/97 Sen Faircloth - 03/11/97 Sen Moseley-Braun - 03/11/97 Sen Bingaman - 03/11/97 Sen Dorgan - 03/11/97 Sen Durbin - 03/13/97 Sen Lugar - 03/13/97 Sen Baucus - 03/17/97 Sen Kerry - 03/17/97 Sen Conrad - 03/17/97 Sen Ford - 04/07/97 Sen Landrieu - 04/08/97 Sen Glenn - 04/17/97 Sen Murray - 04/22/97 Sen Murkowski - 05/05/97 Sen Levin - 05/15/97 Sen Rockefeller - 05/21/97 Sen Abraham - 06/10/97 Sen Dodd - 06/10/97 Sen Kennedy - 06/11/97 Sen Craig - 06/12/97 Sen Hutchison - 06/12/97 LAW IN MINNESOTA In 1996, a $195,000 MN law was enacted to create a birth defects registry. In 1997, a bill to begin collecting individually-identifiable birth defect data without consent was defeated in the Minnesota legislature by adding parent and patient consent (amendments offered by Senator Warren Limmer and Rep Alice Seagren, and assisted by Sen. Allan Spear). The March of Dimes made establishment of state birth defect surveillance systems one of their top priorites in 1994 and testified countless times on behalf of the bill and against parent consent. The mandate for a BD registry remains in state law, but since funding and access to medical records was defeated, it has remained dormant, ready to raise its ugly head at the least opportunity. That opportunity has apparently arrived. The bill would have given the Minnesota Health Commissioner authority to define what a birth defect is and then authorize state officials to enter hospitals and clinics, peruse through everyone's medical records, extract information on children and their parents, place it all on a registry and never notify the parent, child or individual about the fact that they were being tracked. In addition, state agencies and other organizations (including the March of Dimes and insurance companies) in and outside the state were to be allowed access to the patient identifiable information. (For Minnesota residents: the authors and co-authors of the initial bill were Senators Berglin, Piper and Lourey and Representatives Rest, Mares, McGuire and Dorn. MN votes will be available shortly on parent/patient consent amendments on the CCHC webpage) MINNESOTA BIRTH DEFECTS 1997 REPORT Here are some defining excerpts of the Minnesota Birth Defect Information System Report to the Minnesota Legislature, March 1997: The report cites the March of Dimes Birth Defects Foundation definition of a birth defects: "an abnormality of structure, function, or metabolism, whether genetically determined or the result of environmental influence during embyonic or fetal life. A congenital defect may cause disease from the time of conception through birth or later in life." The MN report finds difficulty with this definition saying, "For case-finding purposes, [the definition] is too broad; it combines conditions that vary in severity from quite minor, such as pigmented skin lesions, to conditions that are very severe and may be life-threatening, such as heart abnormalities. In addition , it includes any disease with a genetic origin, including some types of cancer and some disease the don't appear until middle age, such as Huntington's chorea.It also implies that birth defects are caused by either genetic or environmental influences. Increasing scientific evidence points to this dichotomy as being false in many cases." Instead the report defines birth defect cases for inclusion as "children with selected major and minor structural congenital defects whose mothers are Minnesota residents. Children must have signs or symptoms related to a birth defect prior to one year of age, but may be diagnosed by a health care provider at any time before their sixth birthday. The case definition should also include children who are diagnosed with infantile spasms. Following establishment of the BDIS, a work group should be formed in approximately five years to determine whether the system should also conduct surveillance for developmental disabilities." "The [birth defects information] system should collect available information on the infant/child/mother, and father...Some of this information is already available on the birth certificate, such as nome date of birth and address information; other diagnostic informaiton can be collected from the medical record. Data that would require parent contact to obtain would greatly increase the cost to the system and might well be perceived as intrusive by parents." "There is always a trade-off between an individual's right to privacy and the need of data for public health activities. Because the collection of these data are clearly important for the effort to prevent birth defects, the Work Group felt that collecting these data without the permission of the individuals or their familes was justifiable." Noting that rarely can humans be found completely perfect and without defect, "In comparison to major congenital defects, there is a high incidence of minor congenital defects and there is poor reliability in identifying them. Collecting population-based data on all minor defects could quickly overwhelm a system, especially in the beginning stages of development." ================================== Citizens' Council on Health Care 1954 University Ave., Suite 8 St. Paul, MN 55104 651-646-8935ph 651-646-0100fx http://www.cchc-mn.org DECLARATION & DISCLAIMER ========== CTRL is a discussion and informational exchange list. Proselyzting propagandic screeds are not allowed. Substance—not soapboxing! These are sordid matters and 'conspiracy theory', with its many half-truths, misdirections and outright frauds is used politically by different groups with major and minor effects spread throughout the spectrum of time and thought. That being said, CTRL gives no endorsement to the validity of posts, and always suggests to readers; be wary of what you read. CTRL gives no credeence to Holocaust denial and nazi's need not apply. Let us please be civil and as always, Caveat Lector. ======================================================================== Archives Available at: http://home.ease.lsoft.com/archives/CTRL.html http:[EMAIL PROTECTED]/ ======================================================================== To subscribe to Conspiracy Theory Research List[CTRL] send email: SUBSCRIBE CTRL [to:] [EMAIL PROTECTED] To UNsubscribe to Conspiracy Theory Research List[CTRL] send email: SIGNOFF CTRL [to:] [EMAIL PROTECTED] Om
