URGENT CALL TO ACTION: Legislative Commission Meeting TOMORROW 4/8/22 at 3:00 PM
The Nevada Legislative Commission will be hearing and voting on LCB File #R088-20 with proposed changes to NAC 442 introduced by NV DHHS as related to the Newborn Screening blood sample taken from infants at birth.
Please submit public testimony opposing LCB R088-20 and ask legislators on the Legislative Commission to vote against this proposed NAC update.
Public testimony under this item may be presented in person or by phone or written comment. Because of time considerations, each person offering testimony during this period for public comment will be limited to not more than 2 minutes.
Main Meeting Location: Friday April 8, 2022 at 3:00 PM
Grant Sawyer State Office Building,
Room 4401555 East Washington Avenue
Las Vegas, NV
Simultaneous Remote Legislative Building Room 4100
Videoconference Location: 401 South Carson Street
Carson City, Nevada
IN PERSON: In Person testimony can be made during the meeting in Las Vegas and in Carson City remote videoconference location.
WRITTEN: Written comments may be submitted by email (at firstname.lastname@example.org) or facsimile (at (775) 684-6761) or mail (401 S. Carson Street, Carson City, NV 89701) before, during or after the meeting.
BY PHONE: To phone in to provide testimony during this period of public comment in the meeting, any time after 2:30 p.m. on Friday, April 8, 2022: Dial: (669) 900-6833 When prompted to provide your Meeting ID, please enter: 881 3132 7294 then press # When prompted for a Participant ID, please enter # To resolve any issues related to dialing in to provide public comment for this meeting, please call (775) 684-6990.
NAC Proposed CHANGES:
- Will require parents of ALL babies born in Nevada to have blood sample taken and submitted to the State Public Health Laboratory (located at UNR) for testing for “preventable and inheritable disorders”. Current law applies only to babies born in hospitals and current law allows parents of infants born outside of a hospital to voluntarily participate in the screening. New code would mandate what is currently optional for many Nevada parents of newborns.
- Screening results will be given to Nevada Chief Medical Officer & the local health authority where the infant resides & the local health authority where infant was born.
PROBLEMS with proposed changes:
There is no clear opt out language in the new code. Parents must have the ability to decline this medical intervention based on religious beliefs or philosophical reasons.
For babies born to mothers in the absence of a “birth professional” (doctor, nurse, midwife, doula, etc.) in attendance at the birth, this proposed code puts the onus on the mother of the child and requires her to take the infant for the heel prick blood draw and to submit it to the state lab herself.
The list of disorders to be screened for will defer to federal government control via HRSA guidelines (by language specified in this code update) that can change at any time without state approval.
There is no language to protect the private DNA data of Nevadans. There is nothing that prohibits the state or the state newborn screening lab or UNR from selling this private data to 3rd parties.
Here’s how DPBH summarizes the changes. They fail to mention what we have identified above to be the most significant changes being proposed:
- Details processes by which the State Public Health Laboratory (SPHL) can request information and
payment related to laboratory and non-laboratory tests and examinations
Specifies how the SPHL and primary care physicians will share relevant information and examination and
testing results and ensure proper referral and care for infants suspected of or diagnosed with specific
preventable or inherited conditions
- Details specific blood sample processes and standardized criteria by amending Nevada Administrative
- Creates a means by which the SPHL can detail a public process by which fees can be changed, includes
examinations and non-laboratory tests related to newborn screening needed as part of diagnostic
screening for all required conditions, and
- Establishes clear processes for parental or guardian information sharing and referral and care transition
from SPHL and health care providers and for information sharing to the Department of Health and
Human Services Chief Medical Officer and local health officers
We see the above summary as a deliberate attempt to disguise the true intent of these proposed changes to Nevada law as detailed in our analysis above. We assert that parents have the have the right to decline the invasive medical procedure of a heel prick in order to obtain these blood samples, have the right to decline biological testing of their children and have the right to decline to participate in a government run biological database for any reason including religious belief or philosophical reasons.
Click here to read current NAC 442: https://www.leg.state.nv.us/NAC/NAC-442.html#NAC442Sec020
Click here to see the proposed changes to NAC 442: https://dpbh.nv.gov/uploadedFiles/dpbh.nv.gov/content/Programs/MIP/dta/Statutes/R088-20RP1-Regs4SBIQ.pdf
HRSA Guidelines that DBPH is proposing the state follow: https://www.hrsa.gov/advisory-committees/heritable-disorders/rusp/