Re-consenting When Custody Status Changes Posted on February 28, 2006 John Landsverk (bio) describes how he and his colleagues have worked through consent issues with children in foster care.

Parental consent issues have been a big issue with regard to longitudinal research and to the IOM [Institute of Medicine]. There is a continuous right of child to assent to participate in a study. That means with repeated waves, they have a right to refuse or to assent. That is a given rule. It's not once consented, always consented. There is no intent to consent rule in research in the ethics part, that notion of intent to treat.

Re-consenting when custody status of the child changes over the course of a longitudinal study is certainly, I think, now the state of the art. If you're thinking about a child being re-unified with a biological parent, that biological parent has to be consented if they were not when they began the study. If a substitute parent becomes a guardian, the legal status changes, there again re-consent. Biological parental rights are severed, and the child is adopted, obviously the adoptive family has the right to consent or not consent to continuance of that child in the study.

The bad news is that's a lot of work. The good news is we've had very very good success at continuing children in longitudinal research despite this, and in fact, our oldest longitudinal study started with kids from birth to age three in our original foster care study are now we're applying to go back to them at age 15-18. We actually had to go back and re-consent every child of the 330 kids. We had to try to find every biological parent because the informed consent ground had shifted and there were a different set of rules now and a different understanding about it. We successfully did that. I think we only lost, I believe it was, 2 children to continuance in that project, so it can be done, but it sure is a heck of a lot of work.

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