Emory Report

Mar. 1, 1999

Volume 51, No. 22

Health care, research confidentiality Emory's top two lobbying concerns at Capitol Both the Georgia Legislature and Congress are grinding through their current sessions, and Emory is keeping an eye on several legislative and budgetary pots simmering at both the state and federal levels. Not surprisingly, health care dominates many of the University's concerns--about "99 percent" of Emory's interest items at the Georgia Legislature revolve around health care, according to Steve Moye, associate vice president and director of the Office of Governmental Affairs. And this was before Gov. Roy Barnes introduced legislation Feb. 21 to expand doctor choice and allow patients to sue HMOs, which only intensified the health care debate. "Gov. Barnes and the new administration are really coming out strong on health issues, and we're fine with that," Moye said, adding that his office works closely with a health policy advisory board chaired by David Blake, associate director of health sciences, to determine the "top tier" issues for each legislative session. Topping this year's list is a budgetary item concerning payments Emory receives from the Southern Regional Education Board (SREB), a state agency that subsidizes state medical schools for every Georgia resident enrolled. When the SREB was founded, Emory was the only private medical school in the state. The agency took the number of Georgians enrolled at Emory at the time, used that number as a baseline and promised a certain amount of funding for every resident over the baseline Emory enrolled. But since that time other private medical schools at Morehouse College and Mercer University have opened. They have no such baseline to surpass, and Emory wants its baseline eliminated and the SREB to subsidize all Georgia residents enrolled. Danette Joslyn-Gaul, new director for state affairs, said talks are going well to gradually implement the change. "The appropriations subcommittee has made a recommendation that Emory have its baseline number, which right now is 118, cut in half," Joslyn-Gaul said. "This is to the tune of about $550,000. They have agreed to recommend the change to the full committee, and we just have to keep trying to shepherd it through. It would be roughly $1 million to get all of it, and that's a lot of money to ask for in this budget, so we decided to try to take half on this year and maybe half next year." Joslyn-Gaul knows how the wheels of state government turn; she was former Gov. Zell Miller's executive counsel and in addition to advising him on legal matters helped research and draft legislation on issues of interest to him. That last skill has come in handy with the other top tier issue Emory faces at the state level. Moye's office, with the help of the late Joe Crooks, drafted a bill on research confidentiality that would protect academic research findings, specifically those involving human subjects. Emory was personally affected by the issue last year when Jonathan Liff, a professor in the School of Public Health, had his research on the effects of secondhand smoke subpoenaed in connection with two lawsuits; state law in Georgia forced him to disclose his findings. "In both cases the tobacco companies wanted to reanalyze the data to try to prove that smoking isn't bad for you," Liff said. "In many of the kinds of epidemiologic research we do, we interview people. In some studies, such as breast cancer studies, it's important to get confidential information like reproductive history and contraceptive use. Not having protection could limit our ability to promise confidentiality to people and therefore limit their ability to participate." "Many other states have some sort of research confidentiality law," Moye said. "The neat thing about this is we're finally becoming proactive. We're seeing a situation, wanting to be proactive, and this has a really good chance of passing. It's really exciting." He added that this is the first time his office has created its own piece of legislation. A similar issue is under debate at the federal level. At the end of its last term Congress passed an omnibus appropriations bill that said federally funded research projects were subject to the Freedom of Information Act (FOIA) and must make data public on demand. "The research community in general is up in arms about this," Moye said. "There is very little guidance for what this means in terms of what the 'data' is and when it is to be released," he added. "It has major implications. Everyone feels FOIA is not the proper vehicle." Moye also said his office continues to lobby on behalf of Emory's transplant program for organ allocation. There is currently a moratorium on changes to organ allocation regulations that would establish a national waiting list for organ transplants, adversely affecting Emory's program. The federal government is conducting a study that will be finished in May, and the issue will open for debate again. --Michael Terrazas Return to March 1, 1999, contents page