Illinois bill to fund stem cell research
* The Illinois Regenerative Medicine Institute would be publicly accountable. Its new seven-person board, appointed by the governor, would effectively report to the Department of Public Health, which would establish most of the policies.
* Only nonprofit institutions could receive grants, although corporate representatives are permitted on the board.
* The bills do not set aside, and consequently lock-up, any funds. They merely establish a granting structure. Stem cell research must compete with a complete array of other budget priorities on a level playing field.
* They put various forms of stem cell research on equal footing.
* The bills contain tough provisions to avoid conflict-of-interest and require public disclosure of personal financial interests. This applies to members of the governing board as well as any advisory committees. (California, take note.) What's more, the governing board can't include employees of any institution that is eligible for grants.
* Provisions for transparency include disclosure of the identities of all applicants of funding - not just the grantees. California, take note again.
* Reproductive cloning is banned and criminalized as a class 1 felony.
The most glaring shortcoming of the bills is one of omission: There is no mention of intellectual property provisions. Perhaps there is an existing statute governing state-funded research. If not, who will own the patents? Will the state receive a portion of profitable discoveries made with tax dollars? Will the state's health care program be forced to pay high prices for such therapies?
Furthermore, the bill prohibits neither payments to women to provide eggs for cloning-based stem cell research, nor the reselling of their eggs. But it does call on the governing board to establish research standards "in consultation with... experts such as the International Society for Stem Cell Research, the California Institute for Regenerative Medicine, the Institute of Medicine." I would hope, if not expect, that such guidelines would be enforceable - not voluntary - and prohibit compensation for egg providers.
Finally, one clause jumped out at me:
All Institute information concerning medical research shall be confidential and privileged and not subject to disclosure to any person other than Institute personnel.
This is broadly worded, and leaves room for abuse. It should be tightened to cover only justifiable secrets such as research subjects' private details and proprietary trade secrets.