Federal Officials Move to Block Life-Saving Research
HHS’ Proposed Rules Would Undo Court Ruling Legalizing Bone Marrow Compensation
They say in part:
"The proposed regulation would ban marrow compensation just when empirical research has begun into the effects of compensating donors. A team of economists—Nicola Lacetera of the University of Toronto, Mario Macis of Johns Hopkins University, and Robert Slonim of the University of Sydney—were in the process of finalizing a research proposal that would have investigated the effects of donor compensation when they learned of the new rule.
“These new regulations make it impossible for researchers to obtain the necessary evidence to inform policy. Our proposed studies would be made illegal by these new provisions,” explained Macis, who, along with Lacetera and Slonim, has published some of the leading work showing that economic incentives can be effectively used to increase blood donations without affecting blood supply safety. “Properly designed compensation for bone marrow donors could similarly lead to significant increases in donations, thus giving potentially hundreds or thousands of people in need of a transplant every year a greater chance of survival. At a minimum, the federal government should not make it illegal for researchers to find out whether incentives can help address the shortage of bone marrow donors.”
“I don’t think that anybody should go to jail just for trying to save somebody’s life,” added Doreen Flynn, who has three children with Fanconi anemia, a blood disease that frequently requires a bone marrow transplant and who was the lead plaintiff in the original lawsuit. “If paying donors results in more marrow donations, we should pay them. And it shouldn’t be a crime to investigate it.”
“We know what doesn’t work,” said Robert McNamara, also a senior attorney with the Institute and co-lead counsel in the case. “We have 30 years of experience with an altruism-only marrow-donor program, and we know that has not succeeded in recruiting enough donors. The only question is whether offering compensation can achieve better results. We will not allow the federal government to make it a felony to find out the answer. Hopefully, we will do that by persuading the government not to adopt this rule, but if we have to, we will sue them again. And we will win—again.”
The proposed regulation is currently open for a period of public comment through December 2, 2013. Individuals who have been impacted by blood-borne cancer or bone marrow donations are encouraged to leave comments on the Department of Health and Human Services’ website: http://www.regulations.gov/#!submitComment;D=HRSA_FRDOC_0001-0115."
You can follow some of the story in my earlier posts on bone marrow and compensation.