About two-dozen representatives from state and federal governments were in Cambridge last week as part of a fledgling campaign to improve collaboration among stem cell scientists by identifying barriers to sharing research material across state lines. What's legal in one state might not be in another, and scientists have expressed concern that differences in laws could impede research and potentially put researchers in legal jeopardy.
Warren Wollschlager, chief of the Office of Research and Development in Connecticut's Department of Public Health, says the interstate consortium wants to assure that no matter where researchers do their work, they can benefit from material developed by colleagues elsewhere.
To that end, one of the alliance's first steps is compiling the states' laws and analyzing their implications on research. Wollschlager said the consortium is not trying to create "a cookbook for all the states to follow," but instead to share information with states about what regulations worked well and what didn't.
"I had no idea, frankly, and I've been a primary care provider for 36 years," Delbanco said in an interview. "It had never entered my mind that family members could feel the same kind of guilt that we as doctors feel. It had never entered my mind they would say, 'If only I'd been more assertive with the doctor before this happened' or 'If only I'd listened to my instincts.' "
Another surprise, Delbanco said, was how reluctant people are to speak up, afraid that they will get worse care, particularly if they are from disadvantaged immigrant groups.
The Autism Consortium, whose members include hospitals, medical schools, and universities in the Boston area, will transfer profiles of 500,000 genetic variations found across the genomes of 700 families with two or more children who have autism.
"Understanding the genetics underlying a complex disease is not an easy problem to solve. So there's no excuse for hoarding your data when much more can be learned by sharing," Mark Daly, a consortium member from Massachusetts General Hospital and the Broad Institute of MIT and Harvard, said in an interview.
Read news updates and events calendar at boston.com/yourlife/health/blog.