Genetics

A Critical Analysis of Proposed 'Newborn Screening Saves Lives Act of 2007'

Genetic privacy, parent consent and individual self-determination rights are at stake with the U.S. Senate’s recent passage of S. 1858, the ‘Newborn Screening Saves Lives Act of 2007.’ This paper outlines five key issues of concern.

Why Patient Consent Should be Required for the Governor's Genetic Research Proposal

What Consent? - MN's Medical & Genetic Research Law

Minnesota state law denies most consent rights for patients regarding use of their individually-identifiable medical records for medical research. UPDATE: Until the Minnesota Genetic Privacy Act passed in 2006, Minnesota law was silent on collection, storage use and dissemination of genetic information for genetic research. States are not preempted by federal law from passing stronger, more privacy-protecting laws.

England considers DNA profiling at birth

The initiative will begin with wider antenatal screening. But soon babies could have their genetic profiles recorded at birth, to spell out their individual inherited risks of disease later in life.

Newborn Screening

Thus far, the state of Minnesota has illegally collected and claims ownership to the DNA of 780,000 children (soon to be voting adults) and has provided the DNA of 42,210 children to genetic researchers without parent consent. Approximately, 73,000 children are born in Minnesota every year. About 4.2 million children are born across the nation. All of them are losing their genetic privacy and DNA ownership rights. Listen in to an interview of Twila Brase, president of CCHC, as she discusses what's at stake for all citizens in the pending legislation.

CCHC Testifies Against Mandatory Genetic Testing of Newborns

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.