The Executive Officer’s Column
Déja Vu All Over Again—The Tiahrt Amendment
In 1995-96, the American Sociological Association was centrally involved in opposing the Family Privacy Protection Act (H.R. 1271), which sought to impose an absolute requirement of written parental consent in all instances of surveys and questionnaires with children that broadly touched on specific subjects—from religious beliefs to anti-social behaviors. Over many months, the ASA in collaboration with some 35 scientific, school, public health, and parent organizations provided testimony; wrote opinion pieces; held briefings and press conferences; and turned Congressional, public, and media attention to the potential adverse consequences of a one-size-fits-all legislative attempt to by-pass federal regulations for the Protection of Human Subjects (45 CFR 46) and the processes in place for local Institutional Review Boards making these determinations. The visibility we generated around this issue seemed to sufficiently “slow the train” so that final legislation died during the 104th Congress.
Fast-forward to 2001 and the introduction of the Parental Freedom of Information amendment by Rep. Todd Tiahrt (R-KS) to H.R. 1, the President’s education bill that reauthorizes the Elementary and Secondary Education Act (ESEA). As with the amendment sponsored by Sen. Charles Grassley (R-IA) attached to the Goals 2000 Bill of the Department of Education in 1994, the Tiahrt amendment is a similar tag-on that is as unexpected now as it was then. On May 23, Tiahrt passed in the House as part of ESEA by a voice vote of 384-85, without being preceded by hearings. The language requires prior written consent from a parent before a minor can participate in federally funded research in school. While the Grassley Amendment was limited to Goals 2000, the Tiahrt amendment shares the intent of the “failed” H.R. 1271; that is, it aims to reach to all in-school studies funded by all federal agencies.
As Footnotes goes to press, ESEA is being considered by the Senate. Thus far, no companion amendment has been introduced on the Senate side. Even were none to be introduced, however, the issue would need to be addressed through conference committee. As part of a growing coalition of organizations called the Coalition to Save School-Based Research (now numbering 15), ASA has been working to call Senate attention to this amendment and its potential adverse consequences. The letter below illustrates what we have said. Expressions of concern from across the social and behavioral science community will likely soon be essential again. Please check the ASA homepage for further guidance (www.asanet.org) and be prepared to contact key members of Congress or the conference committee depending on events between now and reading this column.—Felice J. Levine
The undersigned organizations want to alert you to a harmful amendment that was passed on H.R. 1. We urge you to oppose the “Parental Freedom of Information” amendment which could be offered as a second-degree amendment to S. 1.
This amendment, which was offered by Rep.Tiahrt, 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 . . .
We encourage you to reject the “Parental Freedom of Information” amendment . . .
Signed by the 15 organizations of the Coalition to Save School-Based Research