Some New Jersey parents have teamed up with the Institute for Justice (IJ) to file a federal lawsuit challenging New Jersey’s practice of keeping collected blood from newborn babies for 23 years without parental knowledge or consent.
From 2017: Other developments include the enactment of the Newborn Screening Saves Lives Reauthorization Act of 2014 (Pub. L. 113–240) in December 2014. The law made a number of changes relevant to the HHS regulations for protecting research subjects, including asserting that research with newborn dried blood spots (DBS) that is federally funded pursuant to the Public Health Service Act is to be considered research with human subjects, and that the provisions allowing IRBs to waive consent would not apply.
From 2017: Other developments include the enactment of the Newborn Screening Saves Lives Reauthorization Act of 2014 (Pub. L. 113–240) in December 2014. The law made a number of changes relevant to the HHS regulations for protecting research subjects, including asserting that research with newborn dried blood spots (DBS) that is federally funded pursuant to the Public Health Service Act is to be considered research with human subjects, and that the provisions allowing IRBs to waive consent would not apply.
https://www.federalregister.gov/documents/2017/01/19/2017-01058/federal-policy-for-the-protection-of-human-subjects