Parents Sue Michigan for Stolen Blood (“Baby DNA”)

April 18, 2018

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The Michigan BioTrust for Health is storing newborn DNA for 100 years. Philip Ellison, the father of a newborn, is an attorney whose job is to sue the government. He got nine other families together in a federal lawsuit. And he sued the state health department and the biobank. His special web page:

The Michigan Department of Health and Human Services (MIDHHS) says it is “responsible for the blood spot samples, holding them ‘in trust’ for future research.” But the Michigan law authorizing genetic and other research without parent consent (Section 333.5431) is unconstitutional, according to Mr. Ellison. It violates the 4th and 14th Amendments, he writes in the federal court complaint.

Here’s why it’s a big deal:

  • Government Property - Unless a state law says otherwise, the child’s DNA becomes state government property (“public property”).
  • Government Control - Unless the legislature says otherwise, government officials make their own rules about how it’s use and who it’s given to.
  • Outside Analysis - Individuals have a right to not know what their genetic code says and to not have it known by outsiders.
  • Freedom - Privacy provides individuals with control; personal control is personal freedom.
  • Privacy Intrusion - Michigan could sequence DNA to predetermine future diseases or disorders.
  • Public Record - If partially or fully sequenced, the child’s genetic privacy is gone.
  • Objectionable Use - Outsiders could use the DNA for objectionable research.
  • Not Anonymous - Researchers have re-identified individuals through their DNA.
  • Identifiable - Child’s blood spots are “coded” allowing easy state reidentification.
  • “Chain Intrusion” - Newborn DNA reveals genetics of mother and other family.
  • Family Secrets - Tests may determine surprising paternity.
  • Restrictions - DNA could limit access to jobs, professions, insurance, military, etc.
  • Profit - Others are profiting from the individual’s DNA without consent.
  • Involuntary - No one should be a research subject without consent (Nuremberg Code).

The newborn dried blood spots (DNA) collected from 4 million people born in Michigan between July 1984 and May 1, 2010 “may be used in health research under a waiver of informed consent granted by the Michigan DHHS Institutional Review Board.” The government declared no need for consent. For everyone born after May 1, 2010 (about a million people), the DNA is stored in the government repository, but not used for research without consent. 

Had earlier lawsuits in 2009 and 2010 not been filed (as a result of CCHF’s efforts on this issue) it’s likely that everyone born in Michigan would be in the “no consent necessary” group. But successful parent lawsuits in Minnesota and Texas may have led to changes nationwide, and perhaps this “we’ll store them, but not use them without consent” decision for babies born after May 1, 2010.

This is the fifth lawsuit. Kudos to Mr. Ellison for taking on the Michigan government, the government biobank, and the companies and researchers who think a child’s DNA is public, not private, property.

For freedom,

Twila Brase, RN, PHN
President and co-founder