Privacy Legislation Would Cost Science


Legislation recently passed by the House and now being considered by the Senate would pose serious problems for researchers conducting federally sponsored research with children. The Family Privacy Protection Act, a low-profile bill that is part of the Contract With America, would require written parental consent for any federally funded 'survey, analysis, or evaluation' that includes questions about a range of sensitive areas: 'parental political affiliation; mental or psychological problems; sexual behavior or attitudes; illegal, antisocial, or self-incriminating behavior; appraisals of another individual with whom the minor has a familial relationship; relationships legally recognized as privileged; and religious affiliation or beliefs.'

This language stems from last year's amendment to the Goals 2000 Education Act by Sen. Charles Grassley (R-IA). The current bill differs from the amendment in that it applies to all federally funded research, not just to that funded by the U.S. Department of Education.

The Family Privacy Protection Act, H.R. 1271, passed the House of Representatives on April 4, 1995, and is pending in the Senate Committee on Governmental Affairs. APA has collaborated with several behavioral and social science organizations since this issue first surfaced last year. Now APA is spearheading an advocacy campaign, involving a broad coalition of groups, to educate the Senate about existing regulations protecting human research participants and about the increased costs associated with a requirement for written consent for all federally funded survey research involving minors.

Some researchers are concerned that, if the bill passes, data-collection costs would soar, and many longitudinal surveys on children and substance abuse, violence, and sexual behavior would no longer be feasible. Gerald Sroufe, PhD, Governmental Professional Liaisons Director of the American Educational Research Association, said, 'It is ironic that the outcome of this bill to support families is likely to be that there will be little health information, for example, on which to build family-supportive policy.' Phyllis Ellickson, PhD, of the RAND Corporation, has estimated that the costs of trying to contact the families that do not return a request for written parental consent would increase from $1 per survey to $25 per survey.

'A multilayered process has been put in place over many years to protect human participants in research, and special protections are observed when children and adolescents are involved,' commented Stacey Cunningham, Research Ethics Officer in the Science Directorate. 'Institutional Review Boards now have the flexibility to waive written consent on research of minimal risk, and waivers are given in a variety of circumstances. To remove that flexibility would give authority to Washington that now resides with local people at the local level. This certainly contrasts with current legislative trends.'

APA hosted a briefing, cosponsored by 10 organizations, on May 1 to inform education, substance abuse prevention, and child advocacy groups about the provisions of H.R. 1271. Felice Levine, PhD, Executive Officer of the American Sociological Association, moderated the briefing and highlighted current federal regulations designed to protect minors in research. Lloyd Johnston, PhD, Program Director at the Survey Research Center, University of Michigan, spoke about the legislation's potential impact on his survey, 'Monitoring the Future,' which is funded by the National Institute on Drug Abuse. Patricia Kobor, APA Legislative and Federal Affairs Officer, provided an update on the legislative history of the bill and prospects for joint advocacy efforts.

In recent weeks, APA and a steering committee including representatives of the Consortium of Social Science Associations, the Federation of Behavioral, Psychological and Cognitive Sciences, the American Psychological Society, the American Educational Research Association, the Alan Guttmacher Institute, the American Sociological Association, and the Society of Behavioral Medicine, have visited staff of the Senate Governmental Affairs Committee to provide information about the bill and to urge that a hearing be held so that attention can be drawn to possible, unintended consequences of the bill.

'Our organizations are trying to work with the Senate Governmental Affairs Committee to produce a bill that does not sacrifice research to promote privacy. The two can coexist,' Kobor said.




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