Gopher Kids or Guinea Pigs?
What's wrong with this study? Almost everything.
First off, the study's consent form [PDF] is disgracefully inept. It lacks, among other things, specific intentions or limitations for what the samples can be tested or used for. It states that participants' DNA samples will be "kept indefinitely" and made available only to "study staff," though no institutions or individuals (aside from the two head researchers) are specified by name. These two critical concerns about to what ends and by whom this information can be used, dispersed, or profited from are left egregiously unspecified.
Research that uses your and your child's DNA might be done a long time after they are collected…[and] will be used for research by Logan G. Spector, Ph.D. and his associates for the purposes of learning more about genetics in growth and development.Tragic bioethical follies of the not-so-distant past involving the Havasupai Indian tribe and the late Henrietta Lacks, as well as the Moore v. Regents of U. California case resulted from unspecified and unrestricted uses of genetic samples taken with similar "consent," and under the same noble auspices of furthering health research in general.
Secondly, the chaotic and otherwise jovial atmosphere of a state fair could not be further opposed from a clinic, lab, or other appropriately focused setting for gaining fully informed consent. The frivolous state fair surroundings paired with the study's colorful, kid-friendly marketing will (by design, no doubt) distract from the fact that handing over your child's DNA is a serious, multi-dimensional decision. The public should be enabled and encouraged to realize that there is more at stake in such a decision - privacy, future exploitation, and the like - than some university swag and free tickets to next year's fair.
Finally, the stated objective for the study is ambiguous at best: "To understand how genes contribute to children's normal health and development." Aside from being scientifically meaningless, this inquiry suggests that there is a genetically defined ideal for normal, healthy children. Such a notion recklessly capitalizes on the growing public obsession with genetically deterministic models of health - a harmful trend evidenced in recent controversies around direct-to-consumer genetic testing and prenatal trait selection.
Activities that search for "good" and "normal" genes at state fairs have a troubled history. Recall the "Fitter Family" contests of the early 20th century, which were explicitly eugenic attempts to judge human stock like cows and pigs and chickens.
Lesson learned? Apparently not.
Previously in Biopolitical Times: