Requires disclosure of information concerning non-invasive prenatal screening for chromosomal abnormalities

• Democratic5
• Republican1

◆ The sponsor's argument

Why James Skoufis says this is needed

Knowledge is essential in empowering patients to make informed decisions about their pregnancies. The proliferation of prenatal genetic testing has provided healthcare providers and prospective parents with an ever- expanding list of conditions for which a fetus can be tested early in pregnancy. Unfortunately, recent media reports have found that testing companies are not providing doctors and patients with relevant information on the high rate of false positive outcomes when testing for statistically rare developmental conditions. In some cases, these tests have false positive rates as high as 85-9O', yet on product brochures before testing, and even on the test result sheets, companies describe the test results as near certain in accuracy. Language such as "reliable," "highly accu- rate," "total confidence," and "peace of mind" are included in promo- tional advertising and documentation provided by testing companies. This bill would require testing companies to provide information about the use of such tests for screening purposes, the fact that not all high-risk occurrences correspond to a positive result, the fact that not all low-risk results correspond to a negative result, a clear statement indicating that non-invasive prenatal screening (NIPS) is intended sole- ly for screening purposes and that any positive result should be followed by confirmatory diagnostic testing. Such language would be required by this bill to be understandable and easily visible when provided. Additionally, the bill addresses the need for widespread dissemination of information about non-invasive prenatal testing. By requiring the commissioner to develop informational materials in multiple languages to post on the DOH website, the bill aims to allow a diverse population to easily access crucial information about the benefits and limitations of NIPS with a simple search online.

This is the sponsor's own case for the bill, quoted from their memorandum. It is not Agora's description of what the bill does.