Ethical Issues Raised About Proposed Database of Children with Complex Medical Problems

A proposed U.S. database of children with complex medical problems, including muscular dystrophy (MD), has raised concern at a respected public policy institute.

Researchers at the Houston institute contend that the database could be used to discriminate against the children and their families, in particular to deny them health insurance.

Dr. Quianta Moore, Tara Blagg and Hannah Todd of Rice University’s Baker Institute for Public Policy outlined their concerns in a paper titled “Ethical Considerations of a National Database for Children with Medical Complexity.

Medical professionals call these youngsters Children with Medical Complexity. They account for only about half a percent of all American children, but represent almost a third of children’s healthcare spending. They also account for more than half of the cost of admissions to  children’s hospitals and 85 percent of 30-day unplanned hospital re-admissions.

The children’s medical needs are often so complex that they require the services of different specialists, which makes their medical care fragmented.

“Though children with medical complexity depend on comprehensive care, they have to navigate a health care system that struggles to effectively coordinate health care services,” the Baker institute team wrote in an issue brief. “This lack of coordination likely contributes to the high rates of adverse events (such as medical errors) that children with medical complexity experience compared to all other groups of children.”

Congress took up legislation known as the Advancing Care for Exceptional (ACE) Kids Act in 2015. It included a provision for the database. It failed to pass, but a 2017 version was introduced in Congress in February.

The idea of the database is to have a centralized, nationwide source of information that could help children obtain quality care, help families do a better job of coordinating care, help doctors track disease outcomes and help researchers develop treatments. The Baker team said it’s worried about the ethical implications of a central repository, however.

Making the database public could lead to “discrimination against children with medical complexity and their families,” according to their paper.

The Genetic Information Nondiscrimination Act of 2008 prohibits health insurers from using most genetic information to determine patients’ eligibility for coverage or the amount of their premiums. This includes information about family members.

However, the act “only protects an individual with a genetic predisposition for the disease, but not an individual actively suffering from said disease,” the Baker team wrote. As an example, “if a child with MD [muscular dystrophy] is listed in a national database, the employer of the child’s parent has the right to use this information to determine the cost of the parent’s, and potentially even the family’s, health insurance.”

The Rice team is particularly concerned that a Children with Medical Complexity database would fail to prevent health-insurance discrimination against the children, even though the Genetic Information Nondiscrimination Act is supposed to prevent it. Another worry is that the genetics act does not prevent discrimination against those seeking disability or life insurance.

The risk of third-party access to the database is another issue the Baker team raised. Because Children with Medical Complexity may have inherited their disease from parents, misuse of the children’s medical records could impact the parents’ employment prospects.

Although “it is possible that medical information in the database could be considered family medical history” and therefore be protected, it is likely that there would not be “protection for conditions that have already fully manifested,” the Baker team wrote. That means “there are risks associated with a national database for children with medical complexity that are not overcome by the potential benefit of improving care coordination,” they concluded.