Public Health Law Newborn Screening

Informed Consent for Newborn Screening Research: State-by-State

See our Informed Consent for Newborn Screening Research issue brief for more background and more detail on federal action in this area. In the map below, we list the resources in the issue brief by state across the following sections:

  • Examples of State Definitions of Newborn Screening Program Operations (sample only): IA, MN, TX.
  • Prohibit the Use of Bloodspots for Anything Other than Test Results: MS, NM, SD.
  • Informed Consent Requirements for Release of Specimens for Use in Research: IA, MN, UT, WA.
  • Require Institutional Review Board Approval for Research: IA, MD, MA, MN, NE, ND, SC, TX, UT, WA.
  • Opt-In or Opt-Out Process for Consent: CA, ID, IA, ME, MN, NE, NH, PA, SC, TX, UT, WA.
  • Opt-In or Opt-Out Consent Process for Storage of Bloodspots: ME, MN, SC, TX, WA.
  • Bloodspot Storage Requirements: ME, MD, NE, NH, SC, SD, WA.
  • Laws Provide that Bloodspots Become Property of State: CA, ME, MT, UT, WA.
  • Laws that Reference Retention by Academic Institution: ND.
  • Length of Time States Are Authorized to Store Dried Bloodspots: DE, ID, IL, IA, MD, MS, MT, NE, NH, NM, ND, OH, OR, TX, UT, WA.
  • Transfer of Specimens: NE.
  • Pending Newborn Screening Consent Legislation (2015): CA, ND.

* Please note: Information is not presently available for U.S. territories or freely associated states

RI
DE
MD
DC
AK
HI
GU
VI
PR
PW
MP
FM
MH
AS