Issues • May 2007 • Storing and Using Newborn DNA—Without Parent Consent

10 PART OVERVIEW - Newborn Genetic Screening, Baby DNA Warehousing Government Research & No Parent Consent

Newborn Genetic Screening Mandate

Every state has a mandatory newborn screening program to test for serious genetic disorders and genetic traits in newborns. Within 48 hours after the birth of a baby, the heel is pricked...

Warehousing Baby DNA

After the newborn genetic testing is complete, all State health departments save and store the residual dried blood spots, some for only 3 months, some indefinitely. At least ten States...

The public is adamantly in disagreement with storage and research of baby DNA without parent consent. One University of Michigan study by Beth Tarini, Aaron Goldenberg and others ("Not Without My Permission")...

Risk, Refusal, & Backlash

Around the country, some parents who know about the government's baby DNA collection, are avoiding the newborn genetic testing program altogether to keep government from taking and claiming ownership to their child's DNA. They weigh the risk and the rarity and decide not to participate..."

Minnesota Parents Opt-Out

In Minnesota, where parents have the legal right to opt out of newborn genetic testing or allow the testing to be done and then require the destruction of the blood spots and the genetic test results, the numbers of parents opting out of one or the other have risen every year...

Research Using Baby DNA

State Health Departments conduct research and share newborn DNA to private and government researchers. In 2002, federal officials met in North Carolina to discuss the creation of a centralized national biobank of newborn dried blood spots...

Research Without Consent

The potential for violation of individual rights is huge in the issue of storage and use of newborn DNA. At stake are human rights, Fourth Amendment rights, privacy rights, parent rights, property rights, human subject rights and patient rights...

Baby DNA Lawsuits

As members of the American public have become increasingly aware of these state-based Baby DNA warehouses, lawsuits against state departments of health have emerged in Minnesota and in Texas. In Minnesota, nine families...

Informed Consent, Benefits, & Risks

Informed written consent is a requirement for all medical procedures. No physician or hospital can conduct genetic testing on an individual without informed written consent. Yet 50 state laws mandate newborn genetic testing which not only tests the child, but to a certain extent, the mother and the entire family bloodline...

Private Newborn Screening Options

Because newborn genetic testing can lead to the early diagnosis and treatment of rare newborn genetic diseases, most parents will want to have their child tested. For parents who do not wish to allow state government to collect and screen their newborn's blood for these genetic disorders and traits, there are...