- Making Policy
Those who think about ethical issues in medicine and medical science have taken to asking, increasingly frequently, what it takes to make a real social difference on these matters, and whether the usual ways of thinking about them are enough. The lead feature article in this issue of the Report exemplifies this new line of inquiry. Legal scholar Mark Rothstein argues that legislation to bar genetic discrimination in health insurance, employment, or elsewhere is not the good idea it appears at first to be, for the reason that information about a person's genetic make-up is not as special as it seems to be. There's no good way or reason to distinguish it from nongenetic information, making laws specially crafted to combat genetic discrimination impracticable. Worse, such laws actually "reinforce the stigma of genetic disorders (by treating them differently from nongenetic conditions) and ignore the underlying social problems that genetic privacy and discrimination exemplify." Genetic discrimination is of a piece with any discrimination involving medical information. If we wish to avoid it, we must attack all discrimination on medical grounds.
But then Rothstein asks whether it's enough to point this out. Perhaps broad solutions are politically impossible—then what? Then drafting more limited legislation, aimed specifically at genetic discrimination, might still make sense. The latter portion of Rothstein's discussion tries to explain when specifically genetic antidis-crimination legislation would be helpful and wise, even though it would still also be, in some sense, wrongheaded.
Rothstein assumes that it is not enough to think intelligently about ethical issues in medicine and medical science; it is also necessary to think to think politically about them. What he assumes, Alta Charo argues for in Policy & Politics (as, to some degree, both Jonathan Moreno and Art Caplan did in earlier installments of this column, which was, fittingly enough, launched only this year). "[I]n the end," Charo writes, "it is the politics we are debating more often than the bioethics . . . Our conversations would be more honest, more articulate, and more effective if we were to embrace this rather than bury it."
Mildred Solomon turns in her article to another kind of thinking insufficiently practiced in bioethics. She argues that bioethicists ought to consider the facts on the ground more often and more carefully than they do, by deploying the perspectives and tools of the social sciences. "In their role as advocates for certain visions of the good, bioethicists need what empirical researchers can offer: a variety of powerful means for getting from here to there." Solomon offers an annotated taxonomy of the ways in which these perspectives and tools can help. As her manuscript wound through the Report's peer review process, reviewers raised many questions about the taxonomic organization, wondering which categories should go together, which should be split, and whether each category really bore the right heading. But whatever framework is used for grouping, the underlying point is sound. As Rothstein shows, there is still a need for conceptual analysis on policy issues in medicine and medical science, but there is undoubtedly a vast need for more good empirical work. [End Page 2]