Psychologists Testify on Family Privacy and Research

At a Senate Governmental Affairs Committee hearing in November, two psychologists testified against the Family Privacy Protection Act on the grounds that this legislation would compromise behavioral research.

The Family Privacy Protection Act, H.R. 1271, would require that prior, written parental permission be obtained before a survey containing controversial questions is given to a minor. Seven categories of survey questions (including those on sexual behavior and attitudes; illegal, antisocial, or self-incriminating behavior; and psychological problems) would necessitate written parental approval. Currently, Institutional Review Boards may waive the requirement for such permission if the survey is deemed to constitute less than a minimal risk to the subjects.

Lloyd Johnston, PhD, who is with the Survey Research Center at the University of Michigan and directs the 'Monitoring the Future' survey on substance abuse funded by the National Institute on Drug Abuse, testified, 'There are many federally funded, ongoing, multiyear studies that are likely to be rendered unusable by the introduction of a written parental consent requirement. This is because their follow-up surveys will obtain much lower response rates than they did during the baseline surveys that already have been conducted, and, of course, the high-risk young people will be systematically lost in the follow-ups. This is not a minor impact.'

Felice Levine, PhD, a psychologist and Executive Officer of the American Sociological Association, in her testimony on behalf of the Research and Privacy Coalition, pointed out, 'We share the interest of concerned legislators in fully informed parental consent, children's assent, and useful and meaningful information. We know that parental permission can be obtained without damaging the viability of scientific questionnaires and surveys. These goals are not mutually exclusive. A bill can be crafted that strengthens parental consent without imposing a single congressional solution to a process that demands multiple approaches, flexibility, and judgment.'

The House of Representatives passed H.R. 1271 in April 1995, but the bill is still pending in the Senate Governmental Affairs Committee. APA and more than 35 other organizations have been working as a coalition to educate the Senate about current human subjects protection procedures and regulations and to urge the modification of the bill. Specifically, the Research and Privacy Coalition opposes a single standard for written parental permission and has urged Congress to allow flexibility for Institutional Review Boards. This will enable IRBs to continue to tailor permission procedures to the specific research projects and populations that will be involved in the project.

Wade Horn, PhD, former head of the Administration on Children, Youth and Families during the Bush administration, and a psychologist, testified in favor of the Family Privacy and Protection Act. Observing that it is easy to obtain written parental permission unless the survey goes against the values of the parents, Dr. Horn stated, 'Researchers need to appreciate that it is parents, and not them (or even the state, for that matter), who are in the best position to determine what is in the best interests of their children...If a particular researcher is unable to obtain an adequate sample informing the potential participants of the purpose of the survey or questionnaire, it is likely that the survey or questionnaire is either insensitive or contrary to the prevailing community standards as to what is or is not an acceptable undertaking.'

Refuting that statement, Dr. Johnston, in his testimony, discussed data showing that many parents, over 50% in some studies, neglect to return a form asking for their written consent, even though they have no objection to their children's participation. Dr. Johnston said, 'The parents are simply busy or attending to more pressing matters. If this bill is enacted, research will suffer--not because parents object, but because they don't have time to ensure that their children do participate.'

Visit PPO's Web page at for the full text of the testimony delivered by Dr. Levine on behalf of the Research and Privacy Coalition.

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