Other researchers disagreed, however. David Foster of Genzyme Corporation in Cambridge, Massachusetts, described how the Massachusetts legislature was close to passing a law that would have crippled certain types of research in the state. "They have been at this [writing genetic discrimination legislation] for two years, and now that some of our key research folks, like Massachusetts General Hospital, are starting to review legislation which is actually ready for passage, they have discovered that it would shut us down. When the research folks look at this and think it through, they are dumb founded. They cannot believe that state legislatures would pass certain things that would really prohibit a lot of the research that we take for granted today."
As observed by Eleanor Kerr of SmithKline Beecham, "it is a mixed bag out there." California legislators may have done their homework and produced a reasonable law, but other legislatures have not. "The danger here is that without federal legislation states are racing ahead. You saw a list of ten bills in Congress. There are literally hundreds on the state level. I think about twenty states have now passed statutes. There are states that have passed statutes, that have repealed them and passed new ones. We are not just dealing with California."
For that reason, many of the workshop participants seemed to want the federal government to step in. "I think one of the hopes of the research community," said Raymond White of the University of Utah, "is that reasoned legislation at the federal level might actually supersede a large number of local efforts which might not be so well thought through and might, in fact, be damaging to local groups."
A second argument for federal involvement was that even if all the states passed reasonable legislation, there would still be fifty different sets of regulations. "One of the concerns about approaching this state by state," noted Leo Whelan of the Mayo Clinic's legal department, "is that it is very easy to conceive of a situation where samples are collected in one state under full compliance with that state's laws and then the researcher later hopes to collaborate with a researcher in another state but is unable to do that because of differences in the two states' laws. That could be a very significant problem."
Or, White said, consider the nationwide cancer-genetics network that the National Cancer Institute is now planning. "Can you imagine trying to share records not only between states but to merge and provide access to records at the national level if each state, each community, each principality has its own set of regulations which you must satisfy in order to create a merger? I think that the effort would be effectively gutted were that to come to pass."
If the federal government is to get involved, what should it do? Perhaps the first and most important thing, some workshop participants said, was to keep the issues of genetic discrimination and access to health care separate from the policy issues surrounding genetic research. Because genetic research produces information that, if leaked, could lead to a research subject losing health insurance, there is a natural tendency to put genetic research and genetic discrimination into a