Survey researchers can breathe a sigh of relief, as the 104th Congress has adjourned, and, for now, the Family Privacy Protection Act has died. Assumed by many to be headed for easy passage, the bill passed the House of Representatives, but did not reach the Senate floor before the congressional session came to a close. That the bill did not become law was due to the efforts of a coalition of organizations led by the American Psychological Society, the Society for the Psychological Study of Social Issues, the American Sociological Association, and the American Psychological Association.
Introduced by Senator Charles Grassley (R-IA), the bill required an absolute, prior written consent procedure before children could participate in even the most innocuous survey research. The legislation was part of the Republican “Contract with America,” and passed the House in April 1995. In April 1996, the bill had passed the Senate Governmental Affairs Committee with a vote along party lines, but it never reached the Senate floor for a final vote.
The Family Privacy Protection Act would have affected any survey funded in whole or in part by the federal government that asked questions in seven socially sensitive areas: parental political affiliations or beliefs; mental or psychological problems; sexual behavior or attitudes; illegal, antisocial or self-incriminating behavior; appraisals of other individuals with whom the minor has a familial relationship; relationships that are legally recognized as privileged, including those with lawyers, physicians, and members of the clergy; and religious affiliations or beliefs.
A coalition of over 30 organizations representing children, parents, scientific researchers, public health officials, health care providers, and school administrators worked to defeat this bill by calling attention to the damaging effect the one-size-fits-all policy would have on research efforts, and by educating policy makers about the detailed and time-tested regulations currently in place to protect human research subjects, especially vulnerable participants such as children.
Among the primary arguments of the coalition was that a requirement to have parents sign a permission statement would severely reduce the number of children who would participate in research. And not so much because parents would disagree with the value of the research or content of the questions, but because there is a simple tendency for busy parents not to respond. This would have dramatic effects on survey research involving minors and would lead to inadequate sample sizes and under-representation of at-risk children. Coalition members argued that parents and policymakers want-and regularly use-the information obtained through these surveys, and that the Family Privacy Protection Act was not at all about family privacy but instead promoted the ideological belief that children’s behavior can be negatively influenced by questions asked in survey research.
Coalition representatives testified before the Senate Governmental Affairs Committee, organized a congressional briefing, and held a press conference to get the attention of policymakers and to highlight the chilling impact the bill would have on our ability to collect information on risks children face. At one point late in the session, there was discussion on the Hill of exempting one specific area of research, drug abuse, and the coalition fought successfully to prevent any exemptions. The Clinton administration was notified of the Coalition’s opposition and urged to resist any such “carve-out” attempts.
These activities, in combination with letters from researchers and visits to congressional members’ offices, were successful in pointing out the serious, unintended consequences of passing a bill that on the surface appeared to be good policy. In the end, the coalition raised enough questions about the bill to prevent its consideration on the Senate floor, especially for a Congress eager to adjourn and hit the campaign trail.
“It was a hard-fought two-year battle but a clear victory for children and our research community,” said APS Director of Government Relations Susan Persons. Unfortunately, says Persons, “the 105th Congress could see this legislation arise again, but the actions to educate Congress these past two years should make it more difficult for new legislation to advance. For now, it’s ok to keep plugging away; research efforts to understand and protect the health and well-being of children are safe.”