Student’s study fosters bipartisan legislation

Only two weeks after Brian Skotko, a joint-degree student at Harvard Medical School and the Kennedy School of Government, published a paper about problems in physician delivery of a Down syndrome diagnosis in the American Journal of Obstetrics and Gynecology (AJOG), he has been invited to the nation’s Capitol for a joint press conference with Sens. Edward Kennedy, D-Mass., and Sam Brownback, R-Kan., on the topic. The senators plan to jointly introduce a new bill motivated by Skotko’s study. The bill is titled the “Prenatally Diagnosed Condition Awareness Act” and proposes $25 million in federal funding so that women who receive prenatal test results for conditions like Down syndrome get accurate, up-to-date information and referrals to support groups.Skotko’s study appeared in the March issue of AJOG and found that obstetricians and genetic counselors provide too little information when it comes to delivering a prenatal diagnosis of Down syndrome to pregnant women. Mothers who have children with Down syndrome diagnosed prenatally, reported that doctors did not tell them about the positive potential of people with Down syndrome nor did they feel like they received enough up-to-date information or contact information for parent support groups. Further, the mothers report that all of these shortcomings are happening at an emotional time when women have to decide whether or not to continue their pregnancies. This study is the largest and most comprehensive study on prenatally diagnosed Down syndrome, to date.