Research Practice and Participant Preferences: The Growing Gulf

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Science  21 Jan 2011:
Vol. 331, Issue 6015, pp. 287-288
DOI: 10.1126/science.1199000

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“The irony is, if you had asked me, I probably would have consented” (1). So said Andrea Beleno, a plaintiff suing the Texas Department of State Health Services over its role in the use of newborn screening blood samples in research. Carletta Tilousi, a plaintiff in the Havasupai tribe's lawsuit against the Arizona Board of Regents, expressed similar sentiments: “I'm not against scientific research. I just want it to be done right. They used our blood for all these studies, people got degrees and grants, and they never asked our permission” (2).