TABLE 1.
State Laws Regarding the Retention and Use of DBS According to State
| Retention and Use of DBS | No. of States | States |
|---|---|---|
| Retention and/or use of residual DBS | 20 | CA, HI, IN, IA, ME, MD, MI, MN, MS, MO, NE, NH, ND, OK, SC, TX, UT, WA, WV, WI |
| Use of information related to DBS | 13 | AZ, AR, CO, DE, FL, ID, LA, MA, NJ, OR, PA, TN, VA |
| DBS become property of the state | 4 | CA, ME, UT, WA |
| Unless parents object in writing | 2 | CA, ME |
| State retains control over use of DBS | 10 | CA, IN, IA, ME, MO, NE, ND, UT, WA, WI |
| Broad authority over use, retention, disposal of DBS and related information | 2 | MO, NE |
| Department has authority to approve researchers who may have access to DBS | 3 | CA, ME, WA |
| Research projects using DBS must be approved by the Department of Health | 5 | CA, IA, MO, ND, WA |
| State specifies types of entities that may perform research using DBS | 1 | ND |
| Purpose for which DBS may be used specified | 13 | CA, HI, IN, IA, ME, MI, MO, NE, ND, SC, UT, WA, WI |
| Research using DBS is prohibited | 1 | MS |
| State may charge a fee for use of DBS | 4 | CA, MO, NE, ND |
| Fee may not exceed cost of administering the program | 1 | CA |
| State may charge reasonable fee for use of DBS | 2 | MO, NE |
| Form in which DBS may be released | ||
| DBS may be released for anonymous research without parental consent | 7 | CA, IA, ME, MO, SC, UT, WA |
| Unless parents object | 3 | CA, ME, SC |
| States required to code DBS before release | 1 | SC |
| States required to deidentify DBS, unless parental consent is obtained to release identified DBS | 1 | UT |
| Confidentiality | ||
| Information related to newborn screening is considered confidential | 26 | AZ, AR, CA, CO, DE, DC, HI, ID, IA, LA, MD, MA, MI, MO, NH, NJ, ND, OK, PA, SC, TN, TX, VA, WA, WV, WI |
| Confidential information may be released with parental consent | 14 | CA, CO, DC, IA, LA, MD, MA, MO, NH, PA, TX, UT, VA, WA |
| Parents must be informed of the scope of the information to be released | 4 | CA, DC, MD, MO |
| Parents must be informed to whom the information will be released | 2 | CA, MO |
| Statistical data not considered confidential and may be released without consent | 11 | CA, CO, DE, DC, MO, NE, ND, TX, UT, VA, WI |
| Purpose for which information related to DBS may be used is specified (generally broad) | 10 | CA, HI, ME, MD, MO, NE, ND, OK, TX, VA |
| Information may be used to study the relationship of factors determining the frequency of newborn screening disorders | 1 | MD |
| Information provided to parents | ||
| Parents must be provided information re the retention of DBS | 8 | IA, MI, MN, NE, SC, TX, UT, WA |
| Parents must be told of the benefit of retaining DBS | 4 | MI, MN, NE, SC |
| Parents must be told of the potential use of the DBS | 7 | IA, MI, NE, SC, TX, UT, WA |
| Use is not defined | 3 | IA, TX, UT |
| Parents provided information about the disposition of DBS | 6 | IA, MI, MN, NE, SC, TX |
| Parents must be informed that they may request destruction of DBS | 3 | MN, SC, TX |
| Parents told that they may be contacted if research reveals information that may be beneficial to child's health | 1 | SC |
| Parental control over DBS | ||
| Parental consent required under certain circumstances to release DBS | 6 | IA, ME, NE, NH, UT, WA |
| Opt out permitted | 7 | CA, ME, MN, MO, SC, TX, WA |
| Parents may prohibit genetic material related to newborn screening from being used for any purpose other than newborn screening | 1 | TX |
| Parents may request destruction of DBS | 5 | MN, MO, SC, TX, WA |
| Children may request destruction of DBS when they reach adulthood | 3 | MN, SC, TX |
States not listed did not have laws that govern the retention and use of DBS at the time these data were collected.