Parents of sickle cell babies undercounseled

Sep 17 2012

By Piriya Mahendra, medwireNews Reporter

Parents of newborns with the sickle cell anemia trait are significantly less likely to receive genetic counseling than those of babies who are cystic fibrosis carriers, say researchers.

Kathryn Moseley (University of Michigan, Ann Arbor, USA) and colleagues say that 20% of physicians reported that parents of newborns with the sickle cell trait did not receive counseling, even though virtually all of the physicians believed that parents whose newborns are carriers of either sickle cell anemia or cystic fibrosis should receive counseling.

As reported in the Journal of Genetic Counseling, parents of infants with cystic fibrosis received significantly more counseling than those of infants with sickle cell trait, at 92% versus 80%. They were also counseled more frequently by genetic counselors or specialty centers than parents of newborns with the sickle cell trait, at 85% versus 60%.

"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," remarked Moseley in a press statement.

"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 believes their study is the first to ask primary care physicians about their office practices in this area. National guidelines recommend genetic counseling for parents of newborns with either cystic fibrosis or the sickle cell trait.

Seven student athletes with the sickle cell trait died suddenly between 2000 and 2009 in the USA, she said. Those deaths led the National Collegiate Athletic Association and the National Athletic Trainers Association to issue guidelines recommending sickle cell testing for all athletes and modification to conditioning programs for athletes with the trait.

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

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