The Newborn Sequencing in Genomic Medicine and Public Health (NSIGHT) program funded research that explored the implications, challenges and opportunities associated with the possible use of genomic sequence information in the newborn period.

Establishes Review Committee on Newborn Screening for purposes of studying, evaluating and making proposals related to newborn screening, including the potential impact of genomic sequencing on tests. Died. Bill Status: Died

This bill amends provisions in the state newborn screening law pertaining to the use of residual dried blood spots for research. The bill states that a person conducting research on blood spots, other specimens, or registry data that is maintained by the health department must follow IRB processes for human research, which must include obtaining parent or guardian authorization. 4/16/2015 Signed by the Governor. Bill Status: Enacted

Requires parental consent for newborn DNA storage. The bill states that no test, DNA, blood spot, or other genetic information may be retained with an infant's identifying information other than for the purpose of newborn screening without parental consent. Died. Bill Status: Died

This bill requires written parental consent to store a newborn's test, blood spot or other genetic information for any purpose other than newborn screening. Died. Bill Status: Died

This bill prohibits the retention of DNA, blood spots or other genetic information with an infant's identifying information for any period of time or for any purpose other than newborn screening without parental consent. Measure failed. Bill Status: Died

No whole-genome DNA sequencing may be performed for the purpose of newborn screening unless the general court authorizes such sequencing by statute.

A physician or an individual to whom the physician has delegated authority to perform a selected act, task, or function may not order a predictive genetic test without prior written informed consent and in the manner specified with some exceptions such as newborn screening. The health department must develop a model informed consent form that, if used, bars the person tested from bringing any civil action on the basis that consent was not obtained.

The health department must adopt and promulgate rules and regulations relating to the use of residual newborn screening specimens and related information. Use may only be made for public health purposes and must comply with all applicable provisions of federal law. The department may charge a reasonable fee for evaluating proposals relating to the use of such specimens for public health research and for preparing and supplying specimens for research proposals approved by the department.

A residual newborn screening specimen is retained for five years after initial submission to the department. After five years specimens are destroyed. Unless otherwise directed, a biological specimen may be released for anonymous scientific study.