Microbiome models, on computers and in lab dishes, see progress

NATURE MEDICINE VOLUME 21 | NUMBER 6 | JUNE 2015 543 Finding funding Given the new regulations, Watson agrees that it will certainly take a fair bit of money to get all disease candidates examined in multi-state pilots, but that the payoff is worth it. “Right now we’re having a disproportionate discussion of the risks of research as compared to the benefits. The risks to privacy are pretty minimal. Each test ranges between $1 to $5 each, and the return on screening is really on the child not becoming sick and requiring very expensive health care.” To facilitate access to newborn blood spots, scientists are also contemplating how to make the consent process easier. One way to obtain consent from mothers and work with the new law is to explain what newborn screening is in the prenatal stage, where women will be “far more receptive” to that type of information, as opposed to when they are in labor and rushed to the hospital, or after they have just given birth, according to Watson. Some lessons might be taken from Michigan and Texas, which both already had an opt-in process analogous to the one required by the reauthorization of the Newborn Screening Saves Lives Act when those changes went into effect. Michigan implemented its statewide consent policy in October 2010, according to Carrie Langbo, coordinator of Michigan BioTrust for Health. Based in Lansing, the BioTrust is a program that oversees the state’s stored blood spots and their use in research. Langbo and the BioTrust worked extensively with prenatal care providers through discussion and on-site training to ensure the smooth adoption of consent regulations for newborn research. Training and educating the birthing staff allowed the hospitals in Michigan to swiftly adopt opt-in consent. “Setting up the whole consent process was not a trivial matter,” Langbo says. “It’s optimal to receive education on newborn screening prenatally and then ensure that after delivery, all birthing attendants and staff have the information to provide prior to discharge.” It took Michigan over two years to conduct this sort of training before the consent policies were adopted as law. “We did really intensive training with the hospital staff back when we were first implementing the new [consent] regulations in Michigan, but it never really ends,” says Jennifer Smith, a spokeswoman at the BioTrust for Health. “Continual reinforcement of the importance of newborn screening is really needed.” Wudan Yan