Thanks to Sen. Christopher “Kip” Bateman (R), Sen. Robert W. Singer (R) and Assemblywoman Mila M. Jasey (D) for sponsoring bills that were signed into law by New Jersey Governor Chris Christie on January 17 providing families of persons with developmental disabilities greater autonomy in making decisions about participation in potentially beneficial research.
The original bill was drafted by Sen. Bateman in response to a suggestion by Matheny.
The law resolves an inconsistency regarding guardian requirements contained in two previous pieces of legislation: The Developmentally Disabled Rights Act of 1977 and the Access to Medical Research Act of 2007. It also expanded the range of studies that are allowed to include ones that might not have direct benefit to the individual participant, but might have broader benefit to persons with disabilities.
The practical benefit of the new law is that families of persons with developmental disabilities will have the freedom that other families enjoy to weigh the risks and benefits of an appropriately reviewed and approved research study. And they will make their own informed decisions about whether or not their family members will participate.
Above, from left: Matheny student Bryan Desatnick, teaching assistant Josh Burke, Sen. Bateman and student Mason Walsh during a previous visit to Matheny by the Senator.