The number one concern that parents feel, in Waldo’s opinion, is protectiveness toward children. “Every parent understands this, particularly if you have a newborn,” she said. “If you see something that you think might harm your children, you are going to immediately feel opposition to that.” Some of the fears about potential harm to children are vague and inchoate, but that does not mean that they are invalid. Sometimes people have a vague sense of unease for a good reason.
The sense of the unknown that surrounds newborn screening and genetic testing in general can generate suspicion and distrust. “If I were a parent trying to make this decision myself, that would be one of my bigger concerns,” Waldo said. “I don’t know what I don’t know and I’m a little afraid of what I don’t know.” Furthermore, science and society have been changing dramatically in recent years and these changes can raise new issues that were not previously foreseen.
A specific concern cited by parents in informal discussions is the fear of discrimination. Perhaps if genetic or biological information about a child exists in a database, they say, it will be used to discriminate against that child. The Genetic Information Nondiscrimination Act (GINA) protects against some forms of discrimination, but it has limitations and is not widely known, so it does not eliminate the fears that people have. Furthermore, even if it were possible to guarantee that a child would never be discriminated against—which is not guaranteed under GINA—sensitive information could still be used to embarrass, humiliate, or ostracize a child.
Parents have raised many other concerns regarding newborn screening programs. The question of a child’s paternity can become an issue if the results of tests are made known. Or, if a first child is born with a disorder and a family makes strenuous efforts to avoid having another child with the same condition, what message does that give to the first child? “Is it in effect telling the child that he is a regrettable mistake and you are going to redouble your efforts to make sure you don’t have another one like him or her?” Waldo asked. “What does that do to a child’s self-esteem?” Genetics research has the potential to make many decisions surrounding reproduction difficult. But “the train is unstoppable,” Waldo said. “Even if all newborn screening programs disappeared, which would be a tragedy, genetics is going to be advancing, and we are going to have to face these tough questions about what to do with knowledge.”
Newborn screening programs also raise difficult issues concerning autonomy, control, and choice. In the preface of the Texas lawsuit, one of the plaintiffs was repeatedly quoted as saying, “If they’d only asked me for permission, I would have said yes.” Waldo expressed some puzzlement over this statement. If parents fear harm to their children from information being stored, then why would they consent to storage? Nevertheless, the desire for choice and control can take precedence in decision making. “People want to