MRA sounds warning over Rush data privacy bill

MRA government affairs director Howard Fienberg says The Best Practices Act by Representative Bobby Rush (pictured) would require research agencies to get “affirmative express consent” from individuals for the collection or use of “sensitive” information.

But data described as “sensitive” includes information on race, ethnicity and income – all of which are among “the most common demographic data in research”, says Fienberg.

He also raises questions on the issue of “express affirmative consent”: specifically, would it need to be in written form, and if so, how will that work for online and telephone research?

In requiring consent for the sharing of data, Fienberg gives the example of an online panel participant: does he or she have to give their consent once, at the outset of the relationship, to cover all third parties, specific third parties or particular types of third parties? Or will consent be needed for every study in which the panellist participates?

“These specifics are vital and completely undefined,” says Fienberg.

He also expresses concern that the bill would legislate to give individuals the write to permanently opt-out of having their information collected or handled by particular companies.

“A permanent opt-out will swiftly put research firms out of business, as new firms pop up (experienced or not) who have not already been forbidden from collecting/handling data on a large number of individuals, forever,” says Fienberg.

Rush’s bill was first proposed in July 2010, and seeks to build and improve on an earlier draft bill drawn up by fellow congressman Rick Boucher and Cliff Stearns.

MRA previously warned that the Boucher/Stearns bill risks making it harder for researchers to reach respondents, thus impacting the accuracy of survey results.

Fienberg’s full analysis of the risks of the Rush bill can be downloaded here. (Thanks to Vovici’s Jeffrey Henning for sharing the link).