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MATERNAL AND CHILD HEALTH Newborn Screening Laws Regarding Use of Residual Dried Blood Samples and Related Information Survey of State Laws by Topic The following topics have been covered by one or more states by statute and/or regulation. To see relevant excerpts of law for the states that have covered a topic within a category, click on the topic. State statutes and regulations were accessed online between February 2014 and December 2014. Coverage States Retention & Disposal Retention and disposition of DBS CA, CT, DE, HI, IL, IN, IA, ME, MI, MN, MS, MO, MT, NE, NH, NM, ND, OH, OK, SD, TX, WA Parents may request destruction of DBS Child may request destruction of DBS when turns 18 Disposition of information related to DBS MN, MO, SC, TX, WA MN, SC, WA AK, MN, MO, NE, ND, WI Ownership & Control DBS become property of the state UT, WA DBS become property of the state unless parents object CA, ME Information becomes property of the state unless parents object CA, ME Department has authority over use of information PA, TX, UT, WI Use & Disclosure Permissible uses of DBS Uses of DBS for which parental permission is not required Prohibited uses of DBS Permissible uses of information related to DBS Use of DBS with consent for testing of conditions not on NBS panel Sharing information within department, with other systems, departments or states Obligation to publish results of research Department may notify parents of research results if information may benefit health of child Department may give information to child when turns 18 if information may be beneficial to health of child CA, DE, ID, IL, IN, IA, ME, MI, MN, MO, MT, NE, ND, SC, UT, WA, WI CA, ME, MN, MO, SC, UT, WA ID, IA, MN, MS, NH, NM, SD AK, AZ, CA, FL, HI, IN, IA, ME, MD, MN, MS, MO, NE, NJ, OK, OR, TN, TX, VA, WI MA NJ, OH, TX, VA ME, NE SC SC Privacy & Security Confidentiality of information Department must code DBS before release Results published without identifying information Only de-identified information may be published Security of storage of DBS Security of health information Written confidentiality agreement required AK, AZ, AR, CA, CO, DE, DC, FL, HI, ID, IL, IN, IA, LA, MD, MA, MI, MN, MS, MO, NV, NH, NJ, ND, OK, PA, SC, TN, TX, VA, WA, WV, WI SC ME VA CA, IA, ME, NE, WA AK, CA, MS, NE, NH, ND, VA, WA CA, WA Review & Approval Research projects using DBS must be approved by Department CA, IA, MO, NE, ND, UT, WA Department has authority to approve researchers who may have CA, ME, NE, WA access to DBS IRB approval required to use DBS for research CA, IA, MN, ND, SC, UT, WA IRB approval required for research using information CA, DE, MA, MN, NE, ND, TX, WA Criteria for research approval specified CA, NE, ND, WI Department may use other IRBs to approve research activities CA Notice posted on website regarding approval to disclose TX Researcher must provide Department with documents produced ND from research project for review of compliance with terms of use Material transfer agreement required NE Notification & Consent Parents must be provided information re the retention of DBS Parents must be informed of the benefits of storage of DBS Information provided to parents about retention/release of information Parents must be informed of scope of the information to be released Statistical data not considered confidential and may be released without consent Parental consent required under certain circumstances to release DBS Opt-out permitted Expiration of consent to release identifiable information IA, MI, MN, NE, SC, TX, UT, WA MN, SC IA, MD, MN, TX, WI AK, CA, DC, MD, MN, MO AK, AR, CA, CO, DE, DC, MS, MO, NE, NV, NJ, ND, TN, TX, UT, VA ID, IA, ME, MN, NE, NH, UT, WA CA, IA, ME, MN, MO, SC, WA AK Fees State may charge a fee for use of DBS Fee may not exceed cost of administering the program State may charge a reasonable fee for use of DBS Sale of DBS and information prohibited CA, MO, NE, ND CA MO, NE MN SUPPORTERS The Network for Public Health Law is a national initiative of the Robert Wood Johnson Foundation with direction and technical assistance by the Public Health Law Center at William Mitchell College of Law. This document was developed by Denise Chrysler J.D., Director, at the Network for Public Health Law – Mid-States Region, University of Michigan School of Public Health and Michelle Huckaby Lewis, M.D., J.D., Research Scholar, at the Berman Institute of Bioethics, Johns Hopkins University, as part of a toolkit on newborn screening laws regarding the use of residual dried blood samples. Preparation of the toolkit was assisted by a Public Health Law Research Program grant from the Robert Wood Johnson Foundation. The legal information and assistance provided in this document does not constitute legal advice or legal representation. For legal advice, please consult specific legal counsel. Page 2