ACTIVITIES ON BIRTH DEFECTS REGISTRY 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.


 
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."