IV 

115TH CONGRESS 

1ST SESSION H. RES. 539 

Calling for sickle-cell trait research, surveillance, and public education and 

awareness. 

IN THE HOUSE OF REPRESENTATIVES 

SEPTEMBER 26, 2017 

Ms. LEE (for herself, Mr. BURGESS, Ms. NORTON, Ms. WILSON of Florida, 

Mrs. WATSON COLEMAN, Mr. GRIJALVA, Mr. EVANS, Mr. HASTINGS, Ms. 

JACKSON LEE, Mr. ELLISON, Mr. MEEKS, and Mr. PAYNE) submitted 

the following resolution; which was referred to the Committee on Energy 

and Commerce 

RESOLUTION 

Calling for sickle-cell trait research, surveillance, and public 

education and awareness. 

Whereas sickle-cell disease is the most common inherited 

blood disorder in the United States, affecting approximately 100,000 people in the United States; 

Whereas more than 3,000,000 people in the United States 

have the sickle-cell trait, and many are unaware of their 

status; 

Whereas in 2010, the total number of babies born with sickle-cell trait was estimated to have exceeded 60,000, and 

the total United States incidence estimate was 15.5 cases 

per 1,000 births; 


lotter on DSKBCFDHB2PROD with BILLS
2 

•HRES 539 IH 

Whereas African Americans (1 in 12) and Hispanic Americans (1 in 100) are most at risk for carrying the sicklecell trait, and the trait has been found in persons of 

Greek, Italian, East Indian, Saudi Arabian, Asian, Syrian, Turkish, Cypriot, Sicilian, and Caucasian origin; 

Whereas individuals who have sickle-cell trait have a 50-percent chance of passing on the abnormal sickle-cell gene 

to future offspring and 25-percent chance of having future children with sickle-cell disease if both parents have 

the trait; 

Whereas sickle-cell disease can be identified before birth by 

testing a sample of amniotic fluid or tissue from the placenta; 

Whereas individuals with sickle-cell trait have the same life 

expectancy as the general population, but are at risk for 

certain conditions, including blood in the urine, kidney 

cancer, complications with trauma to the eye, and tissue 

death in the spleen at high altitudes, or may have a false 

positive A1C test; 

Whereas according to a 2007 study in the American Journal 

of Medical Genetics, all States have been required to 

screen for sickle-cell disease/trait since 2006; however, 

most States lack a protocol for disseminating results of 

trait status, with parents being notified only 37 percent 

of the time; 

Whereas communication of a screening result consistent with 

sickle-cell trait should always be accompanied by appropriate counseling on the implications, provided by an individual with adequate training and understanding of the 

information; 


lotter on DSKBCFDHB2PROD with BILLS
3 

•HRES 539 IH 

Whereas the limited research on the communication of sicklecell trait test results to patients demonstrates that there 

is a high prevalence of misleading information being communicated during counseling sessions for sickle-cell trait 

following newborn screening by clinicians; 

Whereas no studies have examined whether information on 

sickle-cell trait test results is being accurately transmitted to an individual, whether by a family member or 

healthcare provider, prior to a person’s reproductive 

years; and 

Whereas Congress recognizes the importance of ensuring that 

people in the United States can make informed decisions 

as a result of awareness of their sickle-cell trait status: 

Now, therefore, be it 

1 Resolved, That the House of Representatives— 

2 (1) recognizes the ongoing challenges in ad3 dressing health outcomes among people with sickle4 cell trait and sickle-cell disease; 

5 (2) encourages the medical community, in co6 ordination with the State and Federal Government, 

7 to work to ensure that all individuals are made 

8 aware of their sickle-cell trait status by developing 

9 a common strategy for dissemination of screening 

10 results, education, and counseling to parents and 

11 families in collaboration with all 50 States’ newborn 

12 screening programs; 

13 (3) calls on the Department of Health and 

14 Human Services, in collaboration with experts, to 


lotter on DSKBCFDHB2PROD with BILLS
4 

•HRES 539 IH 

1 develop a surveillance and public awareness cam2 paign regarding the importance of knowing one’s 

3 sickle-cell trait status and to gain knowledge on sick4 le-cell disease for all racial and ethnic groups in the 

5 United States; 

6 (4) calls on the Department of Health and 

7 Human Services to expand access for screening and 

8 appropriate counseling for carriers of sickle-cell 

9 trait; and 

10 (5) commits to ensuring support for research 

11 that expands our understanding of the health out12 comes and other implications of sickle-cell trait and 

13 the health outcomes associated with sickle-cell dis14 ease. 

Æ 


lotter on DSKBCFDHB2PROD with BILLS