How states use birth certificates to collect data, conduct research and warehouse electronic health information
Overview
A child’s birth certificate is considered part of what state government calls “vital records,” which are government records of life events such as birth, death, marriage and divorce. In the United States, most vital records are public documents, available for viewing by anyone.
In the past, a child’s birth certificate was relatively simple, with basic data such as name and sex of child, name of mother and/or father, home address, name of hospital, city of birth, and date of birth. Today, however, the birth certificate is used to collect a significant amount of data on the child and the mother.
Our report discusses the history and purpose of the birth certificate, the process of registering births, the data collection forms, the data elements, and the research and analysis rationale used to justify collecting a broader set of data than the basic birth data necessary for simple registration of the birth.
We include comments from mothers concerned about the intrusive nature of the worksheets, as well as segments of laws and rules. We attach a state-by-state spreadsheet of the data fields we found on forms typically called birth certificate “worksheets” and one state birth certificate worksheet. We limited our data collection to a state registration handbook, birth certificate worksheets from 27 states, the Centers for Disease Control and Prevention (CDC), and the District of Columbia.
As most of the public is unaware of the extensive data collection facilitated by the birth of a child, and because it is unclear if parents have any right to restrict state data collection, tracking and research at the time of their child’s birth, we include suggested actions (p. 12) that parents can take to try to protect the child’s and family’s personal, medical and genetic privacy.
Key Points:
• Parents don’t know more data is being collected by the state than is necessary to register the birth of the child.
• Using the child’s birth as an opportunity, states collect a wide array of data on children, mothers and families, such as education levels, race, behaviors, last employment and income.
• Data is used to conduct research and analysis without parent consent.
• “Birth Certificate Worksheets,” labor, delivery, prenatal and mother’s medical records are used to gather the data.
• One state allows parents to refuse to provide data not required for registration, but parents may not be told.
• Included in this report are suggested actions, and attached is a spreadsheet of data collected in 28 states and D.C.
Links to the Report Items:
Report – Profiled from Birth, Vol. 1: Not Just a Birth Certificate
April is “Truth About HIPAA” Month!