Physician, Patient Privacy At Risk Under Down Syndrome Information Law, Critics Say

Main Category: Pediatrics / Children's Health
Also Included In: Primary Care / General Practice;  Public Health;  Women's Health / Gynecology
Article Date: 12 Nov 2008 - 11:00 PST

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Some physicians and abortion-rights advocates are raising concerns that a federal law that requires physicians to provide adoption and medical information to women who receive prenatal diagnoses of Down syndrome or other genetic conditions "could pry open the door of privacy" between patients and physicians, the St. Louis Post-Dispatch reports. Critics of the legislation also "question the law's premise that parents are terminating pregnancies without full information about Down syndrome," the Post-Dispatch reports.

According to the Post-Dispatch, the bipartisan Kennedy-Brownback Prenatally and Postnatally Diagnosed Conditions Awareness Act -- which was signed into federal law in October -- is intended to establish information databases and registries to allow couples better access to adoption resources and accurate information about genetic conditions, such as Down syndrome, spina bifida, cystic fibrosis and dwarfism. The bill was sponsored by abortion-rights opponent Sen. Sam Brownback (R-Kan.) and abortion-rights supporter Sen. Edward Kennedy (D-Mass.). Supporters of the law mobilized after two 2005 studies found that parents of children with Down syndrome often receive information that is "inaccurate, incomplete and sometimes insensitive," according to study author Brian Skotko. According to the Post-Dispatch, studies estimate that 80% to 90% of women who receive a prenatal diagnosis of Down syndrome through genetic testing have an abortion, which researchers believe has contributed to the 8% decrease in people with Down syndrome in the U.S. in the past 20 years.

Supporters of the Kennedy-Brownback Act and advocates for the disabled argue that the need for the law goes beyond party lines and ideology, the Post-Dispatch reports. Linda Orso, executive director of the Down Syndrome Association of Greater St. Louis, said, "I just think what we have to do here is not about pro-life or pro-choice, it's about pro-information." She added, "We need to get accurate information to the medical community so that the parents can make an informed decision."

However, critics maintain that such laws could lead to mandates regarding communication between physicians and patients and erode trust between the two parties. Diana Gray, a professor of obstetrics and gynecology at Washington University Medical School specializing in genetics, said that providing unsolicited information about adoption could appear biased and judgmental to a patient. Gray said offering adoption information does not take into account that the adoption of an infant with Down syndrome could be complicated by the higher probabilities that the child might have major heart defects and other serious medical problems. "We don't have any good data to show how many of these children are adoptable," she said, adding, "I think that's a cruel option to hold out to someone."

The Post-Dispatch also profiled Missouri state Sen. John Loudon (R) and his wife, who are adoptive parents to a son with Down syndrome. Loudon sponsored state legislation in 2007 that requires medical professionals to give patients accurate information on the outcomes of people with Down syndrome and inform women about adoption resources (Cambria, St. Louis Post-Dispatch, 11/9).

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