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140

c h a p t e r

13

Genetics of
Hemoglobinopathies

I. CHARACTERISTICS OF HEMOGLOBIN (Hb)

A.

Hb is a globular protein consisting of 

four subunits.

B. Fetal Hb (HbF)

consists of two alpha-globin subunits and two gamma-globin subunits desig-

nated 

Hb 

2

2

.

HbF is the major form of Hb during fetal development because the O

2

affinity of

HbF is higher than the O

2

affinity of HbA and thereby “pulls” O

2

from the maternal blood into

fetal blood.

C.

Adult Hb (HbA)

consists of two alpha-globin subunits and two beta-globin subunits desig-

nated Hb 

2

2.

D.

Hb contains a heme moiety, which is an iron (Fe)-containing porphyrin. Fe

2

(ferrous state) binds

O

2

, forming oxyhemoglobin. Fe

3

(ferric state) does not bind O

2

, forming deoxyhemoglobin. The

heme moiety is synthesized partially in mitochondria and partially in cytoplasm.

II. SICKLE CELL DISEASE (SCD)

A.

SCD is an autosomal recessive genetic disorder caused by a missense mutation (GAG S GTG)
at the second nucleotide of the sixth codon in the 

HBB gene

on 

chromosome 11p15.5

which results in a normal 

glutamic acid 

S

S

valine

substitution (

E6V

) in the 

-globin subunit of

hemoglobin.

B.

SCD is defined by the presence of 

E6V HbS

and accounts for 60% to 70% of SCD cases in the

United States.

C.

E6V HbS forms highly ordered polymers that aggregate and distort the shape of red blood
cells, making them brittle and poorly deformable. 

D.

SCD may also be caused by coinheritance of the E6V HBB gene mutation with another HBB
gene mutation as follows:

1.

E6V HBB gene mutation 

 a missense mutation, which results in a normal 

glutamic 

acid 

S

S

lysine

substitution (

E6K

) in the HBB gene forming 

HbC.

This means that both 

E6V HbS and E6K HbC

will be present within red blood cells. 

2.

E6V HBB gene mutation 

 various HBB gene mutations associated with -thalassemia.

This means that both 

E6V HbS and various mutations of Hb

will be present within red blood

cells. 

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Chapter 13

Genetics of Hemoglobinopathies

141

3.

E6V HBB gene mutation 

 a missense mutation, which results in a normal 

glutamic 

acid 

S

glutamine

substitution (

E121Q

) in the HBB gene forming 

Hb D (D-Punjab).

This

means that both 

E6V HbS and E121Q HbD

will be present within red blood cells.

4.

E6V HBB gene mutation 

 a missense mutation, which results in a normal 

glutamic 

acid 

S

lysine 

substitution (

E121K

) forming 

Hb O (O-Arab).

This means that both 

E6V HbS

and E121K HbO

will be present within red blood cells.

E.

Sickle cell disease has a very high carrier frequency in African, Mediterranean, Middle
Eastern, Indian, Caribbean, and portions of Central and South American populations. In
particular, sickle cell disease has a 1 in 12 carrier frequency in the African American popula-
tion and a 1 in 4 carrier frequency in the west central African population. 

F. Prevalence.

The prevalence of SCD 1/200 to 650 births in the African American population. 

G. Clinical features include:

infants appear healthy at birth but become symptomatic later after

fetal hemoglobin (HbF) levels decrease and HbS levels increase (note: HbF does not contain
-globin subunits); pain and/or swelling of hands and feet in infants and young children;
varying degrees of hemolysis leading to chronic anemia, cholelithiasis, and delayed growth
and sexual maturation; intermittent episodes of vascular occlusion; in patients with
osteomyelitis there is a disproportionate number of cases due to Salmonella infection; func-
tional asplenia usually results in adolescence after so-called autoinfarction of the spleen;
and acute and chronic organ dysfunction. 

III. ALPHA-THALASSEMIA

A.

-Thalassemia is an autosomal recessive genetic disorder most commonly caused by a dele-
tion of the 

HBA1 gene

and/or the 

HBA2 gene

on 

chromosome 16pter-p13.3

for the 

1

–globin 

subunit of hemoglobin

and 

2

–globin subunit of hemoglobin,

respectively. These deletions occur

during unequal crossing over between homologous chromosomes during meiosis.

B.

-Thalassemia is defined by the reduced synthesis of -globin subunits of hemoglobin. It should
be noted that the clinical amount of 

-globin subunits of hemoglobin is due to 

four (4) alleles.

C.

The deletions of the 

HBA1 gene

and/or the 

HBA2 gene

result in the 

reduced amounts of HbF 

(Hb 

2

2

)

and 

HbA (Hb 

2

2

)

because there is reduced synthesis of 

-globin subunits, which are

common to both HbF and HbA.

D.

There are 

45 nondeletional mutations that cause -thalassemia. The most common

nondeletional mutation is a mutation in the STOP codon of the HBA2 gene resulting in an 
-globin subunit elongated by 31amino acids called 

Hb

Constant Spring

.

E.

-Thalassemia has two carrier states:

1.

0

-Thalassemia (or 

-thalassemia trait)

a.

0

-thalassemia results from the inheritance of a deletion or dysfunction of two 

-globin

alleles. This is a 

carrier state

for 

-thalassemia. 

b. Clinical features include:

moderate thalassemialike hematologic findings. 

2.

-Thalassemia

a.

-Thalassemia results from the inheritance of a deletion or dysfunction of one 

-globin

allele. This is a 

silent carrier state

for 

-thalassemia.

b. Clinical features include:

normal hematologic findings or moderate thalassemialike

hematologic findings. 

F. Prevalence.

The prevalence of 

-thalassemia is very high in the African, Mediterranean,

Arabic, Indian, and Southeast Asian populations. The prevalence of Hb Bart hydrops fetalis

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1/200 births in India. The prevalence of HbH disease is 1/50 births in India. The preva-
lence of 

-thalassemia (silent carriers) is 1/6 births in Sardinia. 

G.

There are two clinically significant forms of 

-thalassemia:

1. Hb Bart hydrops fetalis syndrome (Hb Bart).

a. Hb Bart

results from the inheritance of a deletion or dysfunction of all four 

-globin

alleles and is the most severe form of 

-thalassemia. 

b.

An 

excess of 

-globin subunits

form tetramers during fetal development that have

extremely high affinity for oxygen but are unable to deliver oxygen to fetal tissues. 

c. Clinical features include:

fetal onset of generalized edema, ascites, pleural and pericar-

dial effusions, severe hypochromatic anemia, and death in the neonatal period. 

2. Hemoglobin H (HbH) disease. 

a.

HbH results from the inheritance of a deletion or dysfunction of three 

-globin alleles. 

b.

A relative 

excess of 

-globin subunits

form insoluble inclusion bodies within mature red

blood cells. 

c. Clinical features include:

mild microcytic hypochromatic hemolytic anemia and

hepatosplenomegaly.

IV. BETA-THALASSEMIA

A.

-Thalassemia is an autosomal recessive genetic disorder caused by 200 missense or

frameshift mutations in the 

HBB gene

on 

chromosome 11p15.5

for the 

-globin subunit of

hemoglobin. 

B.

-Thalassemia is defined by the absence or reduced synthesis of -globin subunits of hemo-
globin. A 

0

mutation

refers to a mutation that causes the absence of 

-globin subunits. A 

mutation

refers to a mutation that causes the reduced synthesis of 

-globin subunits. It

should be noted that the clinical amount of 

-globin subunits of hemoglobin is due to 

two (2)

alleles.

C.

The mutations in the 

HBB gene

result in the 

reduced amounts of HbA (Hb 

2

2

because

there

is reduced synthesis of 

-globin subunits, which are found only in HbA.

D.

Heterozygote carriers of 

-thalassemia are often referred to as having 

thalassemia minor.

1.

Thalassemia minor results from the inheritance of a 

mutation of one 

-globin allele

(

/normal 

). 

2. Clinical features include:

individuals are asymptomatic with very mild or absent anemia,

but red blood cell abnormalities may be seen. 

E. Prevalence.

The prevalence of 

-thalassemia is very high in the African, Mediterranean,

Arabic, Indian, and Southeast Asian populations. The prevalence of 

-thalassemia is 1/7

births in Cyprus and 1/8 births in Sardinia. 

F.

There are two clinically significant forms of 

-thalassemia:

1. Thalassemia major.

a.

Thalassemia major results from the inheritance of a 

0

mutation of both 

-globin alle-

les (

0

/

0

) and is the most severe form of 

-thalassemia. 

b.

An 

excess of 

-globin subunits

form insoluble inclusion bodies within mature red blood

cell precursors. 

c. Clinical features include:

microcytic hypochromatic hemolytic anemia, abnormal periph-

eral blood smear with nucleated red blood cells, reduced amounts of HbA, severe ane-
mia, hepatosplenomegaly, fail to thrive, become progressively pale, regular blood
transfusion are necessary, and usually come to medical attention between 6 months S
2 years of age.

142

BRS Genetics

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Chapter 13

Genetics of Hemoglobinopathies

143

2. Thalassemia intermedia

.

a.

Thalassemia intermedia results from the inheritance of a 

0

mutation of one 

-globin

allele (

0

/normal 

) and is a less severe form of -thalassemia. 

b. Clinical features include:

a mild hemolytic anemia, individuals are at risk for iron over-

load, regular blood transfusions are rarely necessary, and usually come to medical
attention by 

2 years of age.

V. SUMMARY TABLE OF HEMOGLOBINOPATHIES (Table 13-1)

t a b l e

13-1

Summary Table of Hemoglobinopathies

Genetic Disorder

Gene/Gene Product Chromosome

Clinical Features

Sickle cell disease

HBB gene/

-globin subunit 

Infants appear healthy at birth but become symptomatic later 

11p15.5

after fetal hemoglobin (HbF) levels decrease and HbS 

glutamic acid 

valine missense 

levels increase; pain and/or swelling of hands and feet in 

mutation very common (E6V)

infants and young children; varying degrees of hemolysis 
leading to chronic anemia, cholelithiasis, and delayed 
growth and sexual maturation; intermittent episodes of 
vascular occlusion; and acute and chronic organ dysfunction.

-Thalassemia 

HBA1 gene/

1

-globin subunit 

Hb Bart

: fetal onset of generalized edema, ascites, pleural 

HBA2 gene/

2

-globin subunit 

and pericardial effusions, severe hypochromatic anemia, 

16pter-p13.3

and death in the neonatal period. 

Deletion mutation is most common

HbH:

mild microcytic hypochromatic hemolytic anemia and 

Reduced amounts of HbF (Hb 

2

2

) hepatosplenomegaly.

and HbA (Hb 

2

2

)

0

-Thalassemia (or 

-thalassemia trait; carrier state)

moderate thalassemialike hematologic findings.

-Thalassemia (silent carrier state): normal hematologic 

findings or moderate thalassemialike hematologic findings. 

-Thalassemia

HBB gene/

-globin subunit 

Thalassemia major (

0

/

0

):

microcytic hypochromatic 

11p15.5

hemolytic anemia, abnormal peripheral blood smear with 

200 missense or frameshift 

nucleated red blood cells, reduced amounts of HbA, severe 

mutations are most common

anemia, hepatosplenomegaly, fail to thrive, become 

Reduced amounts of HbA (Hb 

2

2

)

progressively pale, regular blood transfusion are necessary,
and usually come to medical attention between 6 months 
and 2 years of age.

Thalassemia intermedia (

0

/normal 

): a mild hemolytic 

anemia, individuals are at risk for iron overload, regular 
blood transfusions are rarely necessary, and usually come 
to medical attention by 

2 years of age.

Thalassemia minor (carrier state; 

/normal 

): individuals 

are asymptomatic with very mild or absent anemia, but red 
blood cell abnormalities may be seen.

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144

BRS Genetics

A

B

Figure 13-1. Hemoglobinopathies. (A) Sickle cell disease. 

Photomicrograph shows sickle RBCs (drepanocytes) due to the

rod-shaped polymers of the inherited abnormal hemoglobin S (HbS). The RBC does not become sickled until it has lost its
nucleus and has its full complement of HbS. Sickle cells are thin, elongated, and well filled with HbS. The main clinical
manifestations of sickle cell disease are chronic hemolytic anemia and occlusion of microvasculature (called vaso-
occlusive disease). Vaso-occlusive crisis may occur in the brain, liver, lung, or spleen. Factors that induce sickling are PO

2

(e.g., high altitude) or a concentration of 60% HbS or greater in RBCs. (B) Thalassemia. Photomicrograph shows micro-
cytic and hypochromic RBCs due to various mutations that result in reduced amounts of hemoglobin A (HbA). Note the tar-
get cells (arrows). In addition, RBCs show anisocytosis (excessive variation in RBC size) and poikilocytosis (abnormal
shapes of RBCs). 

VI. SELECTED PHOTOMICROGRAPHS OF HEMOGLOBINOPATHIES

(Figure 13-1)

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