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

New approach to studying chromosomes' centers may reveal link to Down syndrome and more

November 20, 2017
Some scientists call it the "final frontier" of our DNA—even though it lies at the center of every X-shaped chromosome in nearly every one of our cells.

Genome editing enhances T-cells for cancer immunotherapy

November 20, 2017
Researchers at Cardiff University have found a way to boost the cancer-destroying ability of the immune system's T-cells, offering new hope in the fight against a wide range of cancers.

A math concept from the engineering world points to a way of making massive transcriptome studies more efficient

November 17, 2017
To most people, data compression refers to shrinking existing data—say from a song or picture's raw digital recording—by removing some data, but not so much as to render it unrecognizable (think MP3 or JPEG files). Now, ...

Genetic mutation in extended Amish family in Indiana protects against aging and increases longevity (Update)

November 15, 2017
The first genetic mutation that appears to protect against multiple aspects of biological aging in humans has been discovered in an extended family of Old Order Amish living in the vicinity of Berne, Indiana, report Northwestern ...

US scientists try first gene editing in the body

November 15, 2017
Scientists for the first time have tried editing a gene inside the body in a bold attempt to permanently change a person's DNA to try to cure a disease.

Genetic variant prompts cells to store fat, fueling obesity

November 13, 2017
Obesity is often attributed to a simple equation: People are eating too much and exercising too little. But evidence is growing that at least some of the weight gain that plagues modern humans is predetermined. New research ...

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.