Parents of babies with sickle cell trait are less likely to receive genetic counseling, study says

September 11, 2012

Parents of newborns with the sickle cell anemia trait were less likely to receive genetic counseling than parents whose babies are cystic fibrosis carriers, a new study from the University of Michigan shows.

University of Michigan researchers found that 20 percent of physicians reported their patients with newborns carrying the did not get any genetic counseling. In contrast, parents of babies who were carriers received more counseling overall (92 percent vs. 80 percent).

The research was published online in the August issue of the .

" is much more common in African Americans and cystic fibrosis is more common in non-Hispanic Whites," says Kathryn L. Moseley, assistant professor of pediatrics and at the University of Michigan's C.S. Mott Children's Hospital.

"Being a sickle cell carrier conveys some increased health risks, including sudden death and increased risk of severe dehydration in certain environments, but a cystic fibrosis carrier has no additional health risks," says Moseley, M.D., M.P.H. who was lead author on the study and is an investigator in U-M's Child and Research Unit.

"Logically, then, one would think that parents of newborns with sickle cell trait would receive genetic counseling at least as much if not more than parents of newborn carriers of cystic fibrosis. Our study shows the opposite."

Moseley says this is believed to be the first study to ask about their office practices in this area. National guidelines recommend genetic counseling for parents of newborns with either the sickle cell trait or carriers of cystic fibrosis.

Between 2000 and 2009, seven student athletes with the sickle cell trait died suddenly. Those deaths led the National Collegiate Athletic Association and the National Athletic Trainers Association to issue guidelines that recommend sickle cell testing for all athletes and modification to conditioning programs for athletes with sickle cell anemia.

"Even though most children with the sickle cell trait remain healthy, all are at risk for complications under specific conditions. Parents should be aware of the potential risks and genetic counseling could provide that information," says Moseley.

This health disparity needs further investigation, Moseley says.

"Are physicians aware of the risks to individuals with the sickle cell trait, or are they minimizing them? Better methods are needed to inform the parents and physicians about the rare, but real risks to individuals with sickle cell anemia," she says.

Explore further: Sickle cell trait is not risk factor for kidney disease

More information: DOI: 10.1007/s10897-012-9537-3

Related Stories

Sickle cell trait is not risk factor for kidney disease

September 14, 2011
Researchers at Wake Forest Baptist Medical Center report that sickle cell trait is not a risk factor for the development of severe kidney disease in African-Americans. This study, published in the August online issue of Kidney ...

Sickle cell trait can cause sudden cardiac death in black athletes: Why is this controversial?

July 25, 2012
While some published research has hinted at the connection between the sickle cell trait and sudden cardiac death among young, athletic African-American males, which was initially observed in black military recruits 25 years ...

Sickle cell anemia stroke prevention efforts may have decreased racial disparities

February 2, 2012
The disparity in stroke-related deaths among black and white children dramatically narrowed after prevention strategies changed to include ultrasound screening and chronic blood transfusions for children with sickle cell ...

Recommended for you

Science Says: DNA test results may not change health habits

August 17, 2017
If you learned your DNA made you more susceptible to getting a disease, wouldn't you work to stay healthy?

Phenotype varies for presumed pathogenic variants in KCNB1

August 16, 2017
(HealthDay)—De novo KCNB1 missense and loss-of-function variants are associated with neurodevelopmental disorders, with or without seizures, according to a study published online Aug. 14 in JAMA Neurology.

Genetic variants found to play key role in human immune system

August 16, 2017
It is widely recognized that people respond differently to infections. This can partially be explained by genetics, shows a new study published today in Nature Communications by an international collaboration of researchers ...

Active non-coding DNA might help pinpoint genetic risk for psychiatric disorders

August 16, 2017
Northwestern Medicine scientists have demonstrated a new method of analyzing non-coding regions of DNA in neurons, which may help to pinpoint which genetic variants are most important to the development of schizophrenia and ...

Evolved masculine and feminine behaviors can be inherited from social environment

August 15, 2017
The different ways men and women behave, passed down from generation to generation, can be inherited from our social environment - not just from genes, experts have suggested.

Attitudes on human genome editing vary, but all agree conversation is necessary

August 10, 2017
In early August 2017, an international team of scientists announced they had successfully edited the DNA of human embryos. As people process the political, moral and regulatory issues of the technology—which nudges us closer ...

0 comments

Please sign in to add a comment. Registration is free, and takes less than a minute. Read more

Click here to reset your password.
Sign in to get notified via email when new comments are made.