"These issues have drawn much public attention to the ethics of public health biobanking," Mongoven said, "without the proper research into public attitudes."
Lawsuits and citizen campaigns have limited research on neonatal bloodspots in both Minnesota and Texas after parents learned the state had saved children's bloodspots and were using them for research. Public health officials express concern that such negative attention could decrease support for clinical newborn screening as well as for research, putting newborns with serious medical conditions at risk.
While Michigan's state government has fostered greater transparency by creating a Community Values Board to develop ethical guidelines, Mongoven said, many in the public do not know the state saves bloodspots.
"The state faces challenging questions about how to notify the public of the blood samples' existence and of citizens' option to 'opt out' of having their blood used in research," she said. "There are tensions between treating the blood as a community resource or as private property. What the MSU research reveals will inform efforts to meet those challenges."
Mongoven is working on the project with Stephen Lovejoy, associate director with MSU Extension. Across the state, educators from MSU Extension will facilitate regional conversations with the public, helping to connect with communities and to collect data and input.
In addition to Mongoven's study, MSU's Tom Tomlinson, director of the Center for Ethics and the Humanities in the Life Sciences, is leading a bio-banking project that will help define the nature and strength of public attitudes regarding the state bio-bank and its research uses. The study also will consider the best ways to protect the public's interest.
|Contact: Jason Cody|
Michigan State University