CCHC Testifies Against Mandatory Genetic Testing of Newborns

By Twila Brase RN, PHN
President Citizens' Council on Health Care

Madam Chair and Members of the Committee,

My name is Twila Brase. I am president of the Citizens’ Council on Health Care. I am limiting this testimony to article 8 on page 369, beginning on line 25. This section proposes to establish mandatory genetic testing of newborn citizens and to create a database of those suspected of having congenital or heritable disorders.

It is particularly concerning that this major initiative has been placed within a very contentious budget bill. Having it in this bill means that it is less likely to receive the discussion it needs before passage is even considered.

Let me share just a few of the particular concerns with this section.

• First, the Health Department is moving from testing for 5 metabolic disorders to establishing a testing program for any and all heritable and congenital disorders. These terms are not defined, but I went online and found that congenital disorders can include disorders of the brain, the feet, the heart, the skin, the skeletal system, the intestine, and so on.
• Second, in Subdivision 2, on page 370, the commissioner of health is authorized to revise the list of tests to be administered periodically. No public notice or comment period is required. In fact, the legislation clarifies that despite being exempt from rulemaking, the rule would have the full force and effect of law. This legislation could lead to testing for any of the 600 plus gene variants that are already available in medical practice, according to information from the CDC’s web site. The potential for discrimination and unconsented medical research is real.
• Third, in Subdivision 3, parents cannot object, unless they agree in writing that such testing would be in conflict with their religious tenets and practices. They are therefore forced to lie to the government if they want to keep their baby’s genetic data private and free from state testing and research. Only the Jehovah Witnesses and the Christian Scientists will be free of mandated genetic testing. The bodily specimans of Catholics, Baptists, Buddhists, Muslims and all others will be collected and tested and cataloged.
• Fourth, in Section 6, Subdivision 2, the new advisory committee is required to discuss and assess ethical considerations of testing for birth defects. We contend that this discussion should take place in a very public forum before this legislation is even considered.
• Fifth, in Section 7, the commissioner is required to make a referral, maintain a database of the children with positive screenings, and do follow-up. This injects state government into the private lives of families without the family’s consent.

Members of the Committee, let me be clear. This is not newborn screening, this is genetic testing for defects. According to the book Genomics and Disease Prevention which is published on the CDC’s website, “[N]ewborn screening is the largest genetic testing effort in the nation and is primarily performed by state public health laboratories.” This is the government building a database on the frailties of its citizens. There is no choice. There is no consent.

And despite the fact that these tests are not diagnostically conclusive, the baby with a positive result will be entered onto the state’s birth defect registry-again without parent consent. Several questions need to be asked about this. How long will this information be on the database? How will it be used? Who will have access to it? What happens to the data on those who test negative? And what happens to the blood specimans? According to that same publication, Minnesota keeps blood specimens - the DNA of its children - for 13 months to 23 years.

If this legislation passes, health officials will be authorized to build a state inventory of Minnesota’s “less than perfect” - a category we could all fit in if we dig deep enough. Furthermore, health officials will be able to add new tests ad infinitum to more specifically define the genetic susceptibilities of its citizens.

This is not the proper role of government in a free society. History has shown the less than beneficent activities that can occur where such data systems exist. In a time of rising health care costs, knowing the exact identities and locations of some of the state’s most expensive residents could lead to abuse and misuse.

Last Friday, I attended a conference on Genetic Testing at the University of Minnesota. Paul Miller, U.S. Commissioner of the EEOC said in his speech, “The potential for genetic discrimination is real and no longer just the stuff of science fiction.”

What is being proposed here has real dangers along with violations of citizen rights. Therefore, we recommend that this initiative be deleted from this bill and introduced separately so that the legislature and the public have a chance to have the type of indepth dialog and discussion a proposal for mandatory genetic testing requires.

Thank you.