WHY ARE SO many parents, pediatricians, health officials, scientists and child advocates opposing legislation that bears the laudable title "The Family Privacy Protection Act"?
At first blush, this bill may seem desirable. It requires written parental consent before a minor can participate in surveys on a broad range of issues, including parental political affiliations; illegal, antisocial or self-incriminating behavior; sexual behavior or attitudes; or religious beliefs.Yet, appearances can be deceiving. By allowing only written parental consent, the bill will adversely affect children, parents and the nation's ability to monitor and address crucial problems among its youths.
It will jeopardize their access to essential information on such issues as nutrition, health care or high-risk health behaviors such as drug and alcohol use, teenage pregnancy and violence. In essence, this legislation does not protect parents; it shields them from information they need to know.
That is why the National PTA opposes this legislation, and it is why the American Academy of Pediatrics recently wrote that "this legislation is yet another case of style over substance, with a title that is deceiving to the public."
The authors of the Family Privacy Protection Act argue for the protection of families, parents and children. There is no argument here.
In fact, current federal regulations already affirm the right of parents to consent to their children's participation in these and all types of research. Parents must consent to research with their children. With school-based surveys that do not require written consent, parents are notified in advance when their children will be included, and, if they object, they can withhold permission at any time by notifying the school or researcher.
Under federal regulations, moreover, funded research projects must be approved by Institutional Review Boards, which consider consent, privacy, confidentiality, benefits, risks and other issues posed by the research. The boards include members of the public and exist only to protect the rights of subjects in research.
Despite these existing protections, the Family Privacy Protection Act imposes a single standard of written parental consent before a federally funded survey may be given to a minor.
The problem is that a one-size-fits-all legislative solution for every research circumstance cannot and will not better protect families.
For example, in situations of telephone surveys or anonymous questionnaires on sensitive issues, parents may prefer no written record. In other circumstances where there are language problems or high rates of illiteracy, a face-to-face interview or a telephone request may be far better than a legalistic requirement to "get it in writing."
Equally important, only about half of parents, at most, will respond to an initial note requesting written permission for a child to participate in a federal survey.
The full Senate has not yet acted, and we have a small window to convey a simple message: Parental privacy and important research about our nation's young people are fully consistent goals.
In the meantime, thousands of parents, researchers, child advocates, health officials and countless others see the implication of the Family Privacy Protection Act and are contacting their senators to urge opposition. I urge you to do the same.