July 31, 2001

Dear Conferee for H.R. 1:

This amendment, which was offered by Representative Todd Tiahrt (R-KS), specifies that no funds shall be made available under any program administered by the Secretary of Education to any educational agency or institution (that includes any school) that allows surveys to be given to students in schools or other education agencies without prior written consent (regardless of the source of funds used to produce the survey). While we understand the sponsor's desire to promote the involvement of parents and increase the information they have about their children's activities, the amendment is harmful. This amendment could choke off important school-based research on substance abuse, youth violence, and other critical issues and could disrupt school-based health and mental health services. Members of Congress should know what is at stake.

First, the consequences to school-based research would be damaging. Under current law, researchers funded by the National Institutes of Health, National Science Foundation, Centers for Disease Control and Prevention, and Department of Justice, have some flexibility about how to obtain informed parental consent for research involving young people. In all cases, however, our national rules for the protection of human subjects (45 CFR 46) require that before any project receives federal funding, it must be reviewed by an Institutional Review Board (IRB), a research oversight group normally based at a college or university. While IRBs generally require that research be conducted with written consent, they may, depending upon the circumstances, allow other forms of consent. The institution is ultimately held responsible for research conducted by its employees, and as we have seen, universities may lose federal funds if they do not comply strictly with the regulations. Research with children and young people is held to an even higher standard. A "one-size-fits-all" consent policy is heavy-handed and unnecessary for the protection of privacy.

What happens to a survey sample when prior, written parental consent is required? The young people who do not have written permission to participate in the survey are more likely to be of low socioeconomic status, more likely to be members of minority groups, and more likely to be at risk. Any survey research that does not include a representative sample cannot give us accurate information about the extent of problems such as substance abuse, violence or HIV-AIDS it leaves out the children who most need help.

If a survey is judged by an IRB to pose a risk to health or privacy, such that written parental consent is necessary, then under current law, local IRBs can make that judgment. However, under the Tiahrt amendment, a school could not decide for itself to allow its students to participate in federally funded research under an alternative consent procedure without losing its federal funds. This severely undermines a school's ability to make decisions about the best interests of its students.

In addition to the implications for research, there would be serious implications for local school districts. This amendment would make it extremely difficult for local school districts to conduct a broad range of surveys. This amendment simply goes too far in its attempt to protect the rights of parents. Should this amendment become law, local school districts would be subject to increased litigation since the language would be subject to interpretation by parents and local community organizations.

The Tiahrt amendment would impact school-based health services, and evaluations of school-based health services by mandating a consent policy that may or may not be consistent with state or local laws. The Tiahrt amendment removes control and flexibility from local communities. Although the Tiahrt amendment applies to all school-based health care, it would particularly affect school-based health centers, which comprise a critical link in our nation's public-health system for young people. Decisions about how services should be provided in school settings should be left to local decision-makers who can assess the needs of their own communities.

We encourage you to reject the "Parental Freedom of Information" amendment. Please contact Pat Kobor of APA at 202/336-5933 for more information about our concerns.

Sincerely yours,