on behalf of the ACMG Social Ethical Legal Issues Committee Disclaimer: This points to consider document is designed primarily as an educational resource for medical geneticists and other clinicians to help them provide quality medical services. Adherence to this points to consider is completely voluntary and does not necessarily assure a successful medical outcome. This points to consider document should not be considered inclusive of all proper procedures and tests or exclusive of other procedures and tests that are reasonably directed to obtaining the same results. In determining the propriety of any specific procedure or test, the clinician should apply his or her own professional judgment to the specific clinical circumstances presented by the individual patient or specimen. Clinicians are encouraged to document the reasons for the use of a particular procedure or test, whether or not it is in conformance with this points to consider document. Clinicians also are advised to take notice of the date this points to consider document was adopted, and to consider other medical and scientific information that becomes available after that date. It also would be prudent to consider whether intellectual property interests may restrict the performance of certain tests and other procedures.

Integrating ELSI questions into pilot studies will help NBS programs to better understand the potential impact of screening for a new condition on newborns and families, and make crucial policy decisions aimed at maximized benefits and mitigating the potential negative medical or social implications of screening.

No abstract