IV 

114TH CONGRESS 

1ST SESSION H. RES. 296 

Calling for Sickle Cell Trait research. 

IN THE HOUSE OF REPRESENTATIVES 

JUNE 3, 2015 

Ms. LEE (for herself, Mr. BURGESS, Mr. DANNY K. DAVIS of Illinois, Mr. 

RANGEL, Mr. RUSH, Mr. THOMPSON of California, Mr. AL GREEN of 

Texas, Mrs. DINGELL, and Mr. CONYERS) submitted the following resolution; which was referred to the Committee on Energy and Commerce 

RESOLUTION 

Calling for Sickle Cell Trait research. 

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 African-Americans (1 in 12) and Hispanic Americans (1 in 100) are most at risk for carrying the Sickle 

Cell 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 


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•HRES 296 IH 

gene to future offspring and 25-percent chance of having 

future children with Sickle Cell Disease if both parents 

have the trait; 

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, 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; 

Whereas the limited research on the communication of Sickle 

Cell 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 are being accurately transmitted to an individual, whether by a family member or 

healthcare provider, prior to a person’s reproductive 

years; and 


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•HRES 296 IH 

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 Sickle 

4 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 SCT status by developing a common 

9 strategy for dissemination of screening results, edu10 cation, and counseling to parents and families in col11 laboration with all 50 States’ newborn screening 

12 programs; 

13 (3) calls on the United States Department of 

14 Health and Human Services, in collaboration with 

15 experts, to develop a public awareness campaign re16 garding the importance of knowing one’s Sickle Cell 

17 Trait status for all racial and ethnic groups in the 

18 United States; 

19 (4) calls on the United States Department of 

20 Health and Human Services to expand access for 

21 screening and appropriate counseling for carriers of 

22 Sickle Cell Trait; and 


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•HRES 296 IH 

1 (5) commits to ensuring support for research 

2 that expands our understanding of the health out3 comes and other implications of Sickle Cell Trait 

4 and the health outcomes associated with Sickle Cell 

5 Disease. 

Æ 


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