Most parents pay little attention to screening tests for their newly born child. But what does happen to the results and the tissue samples? A report from the Citizens Council on Health Care, a Minnesota free-market group, fears that it could be used for latter-day eugenics programs.  Newborn screening is the biggest example of systematic population-wide genetic testing, it says. Most American states allow parents to opt out of the test, mostly for religious reasons, but only Wyoming, Maryland and Washington, DC require parent consent. Most parents do not even know that the tests are genetic.

As a result, according to a 2004 book, The Stored Tissue Issue, "more than 13.5 million newborn screening cards in storage and new cards being stored at a rate of 10,000 - 500,000 cards a year, depending on state populations.” Governments are accumulating a huge amount of data about the population. So far few parents have objected, but those who do receive a frosty reception from governments and hospitals. They argue that the test results have to be kept on file for genetic research, developing new tests, and protecting public health. One doctor from the Mayo Clinic has even referred to objectors as "social terrorists".

What the CCHC fears is that "the retention of newborn citizen DNA and the creation of government genetic registries [will] provide State health officials with the opportunity to build genetic profiles on citizens". It claims that the  test results can be accessed by "more than 600,000 entities, including government agencies". It says that "the growing collection of genetic test results and newborn DNA could easily enable a eugenic agenda on the part of government agencies and private industry".

Whether or not this is true, informed consent to the tests certainly seems to be an issue. Many state agencies and advocates of newborn screening, such as the March of Dimes, are opposed to establishing a requirement for parental consent. Earlier this year the Mayo Clinic told a committee of the Minnesota House of Representatives,  "The protection of our children is of paramount importance and outweighs any speculative harm that might occur if the program is made voluntary".

The CCHC calls upon state governments to allow parents to choose the conditions for which their child is tested; to destroy records of current State newborn DNA repositories; and to require informed written consent for all tests. ~ Citizens Council on Health Care report, April