Whole genome sequencing

AN ACT Relating to rapid whole genome sequencing; adding a new 1
section to chapter 74.09 RCW; and creating a new section.2
BE IT ENACTED BY THE LEGISLATURE OF THE STATE OF WASHINGTON:3
NEW SECTION. Sec. 1. The legislature finds that:4
(1) 80 percent of rare diseases are genetic in origin;5
(2) Half of all rare disease patients are children;6
(3) 30 percent of children with a rare disease will not live to 7
see their fifth birthday; 8
(4) Rapid whole genome sequencing has demonstrated significant 9
clinical utility to increase early detection of rare diseases in 10
children, improved health outcomes for those impacted by genetic 11
disorders, and yielded demonstrable savings to health care systems by 12
enabling earlier intervention; 13
(5) Access to the results of rapid whole genome sequencing 14
empowers parents to join health care providers in making the most 15
informed care decisions that can avoid other costly tests and 16
invasive procedures, resulting in fewer days in the hospital;17
(6) Rapid whole genome sequencing allows health care providers to 18
identify the exact cause of a genetic disorder in a matter of days 19
instead of four to six weeks in the case of other genetic testing;20
H-0206.1
HOUSE BILL 1444
State of Washington 69th Legislature 2025 Regular Session
By Representatives Thai, Corry, Stonier, Bergquist, Macri, Callan,
Reeves, Davis, Reed, Parshley, Salahuddin, Hill, and Tharinger
Read first time 01/21/25. Referred to Committee on Health Care &
Wellness.
p. 1 HB 1444
(7) Access to genetic testing is more difficult to obtain for 1
families with lower household incomes; and 2
(8) Time is of the essence for rare disease families and their 3
loved ones seeking accurate diagnoses and medically appropriate 4
treatments. 5
NEW SECTION. Sec. 2. A new section is added to chapter 74.09 6
RCW to read as follows: 7
(1) Beginning January 1, 2026, the authority must require 8
provider payment for rapid whole genome sequencing, including pretest 9
counseling and posttest counseling by an appropriate health care 10
provider, for enrollees in medical assistance programs up to one year 11
of age receiving inpatient hospital services in an intensive care 12
unit or neonatal or high acuity pediatric care unit if the following 13
conditions are met: 14
(a) The medical condition of the enrollee's features is not known 15
and the enrollee's phenotype includes one or more of the following:16
(i) Multiple congenital abnormalities affecting unrelated organ 17
systems; 18
(ii) A specific abnormality affecting at least one organ system 19
that is highly suggestive of a genetic condition; 20
(iii) Epilepsy of an unexplained cause with early onset;21
(iv) Symptoms of a complex neurological condition;22
(v) Cardiac diagnostic testing suggestive of possible 23
channelopathies, arrythmias, cardiomyopathies, myocarditis, or 24
structural heart disease; 25
(vi) Laboratory findings that suggest a genetic condition or 26
inherited metabolic disorder; or 27
(vii) Abnormal response to standard therapy; 28
(b) Alternate causes have been considered and determined not to 29
be the cause of the illness; and 30
(c) Timely identification of a molecular diagnosis is necessary 31
to guide clinical decision making and results of rapid whole genome 32
sequencing may aid in guiding the treatment or management of a 33
condition. 34
(2) If the authority or a managed care organization uses a 35
capitated or bundled payment arrangement to reimburse a health care 36
provider for services provided to an enrollee in an inpatient 37
setting, reimbursement for services covered by this section must be 38
paid separately and in addition to any reimbursement otherwise 39
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payable to the health care provider under the capitated or bundled 1
payment arrangement, unless the authority or managed care 2
organization and the health care provider have negotiated an 3
increased capitated or bundled payment rate to include rapid whole 4
genome sequencing, as provided under this section. 5
(3) For the purposes of this section, "rapid whole genome 6
sequencing" means an investigation of the entire human genome, 7
including coding and noncoding regions and mitochondrial 8
deoxyribonucleic acid, to identify disease-causing genetic changes 9
where a final report is delivered in less than 14 days. "Rapid whole 10
genome sequencing" includes patient-only whole genome sequencing, as 11
well as duo and trio whole genome sequencing of the patient and the 12
patient's biological parent or parents. "Rapid whole genome 13
sequencing" includes any analysis, interpretation, and data report 14
derived from such sequencing. 15
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