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[Congressional Bills 114th Congress]
[From the U.S. Government Publishing Office]
[H. Res. 296 Introduced in House (IH)]

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 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
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
    Resolved, That the House of Representatives--
            (1) recognizes the ongoing challenges in addressing health 
        outcomes among people with Sickle Cell Trait and Sickle Cell 
        Disease;
            (2) encourages the medical community, in coordination with 
        the State and Federal Government, to work to ensure that all 
        individuals are made aware of their SCT status by developing a 
        common strategy for dissemination of screening results, 
        education, and counseling to parents and families in 
        collaboration with all 50 States' newborn screening programs;
            (3) calls on the United States Department of Health and 
        Human Services, in collaboration with experts, to develop a 
        public awareness campaign regarding the importance of knowing 
        one's Sickle Cell Trait status for all racial and ethnic groups 
        in the United States;
            (4) calls on the United States Department of Health and 
        Human Services to expand access for screening and appropriate 
        counseling for carriers of Sickle Cell Trait; and
            (5) commits to ensuring support for research that expands 
        our understanding of the health outcomes and other implications 
        of Sickle Cell Trait and the health outcomes associated with 
        Sickle Cell Disease.
                                 <all>
```