Listening behind the questions--how experts can improve the public discourse on gene patenting.

Let’s acknowledge from the outset, this is not the kind of article you would generally see in Pharmacogenomics. For starters, I’m going to write it in the first person because who I am is germane to what I’m going to argue about ethics and gene patenting. In addition, I’m not an expert, in any related field, which is also at the heart of my thinking about this complex topic. I am trained as a journalist, which is how I happened to write my first piece about gene patenting, growing out of a conference co-sponsored by the institution for which I work, the Markkula Center for Applied Ethics at Santa Clara University. We had invited a group of scientists, legal scholars, practitioners and ethicists to address the issue of gene patenting, and my article was supposed to draw on their presentations to outline the key ethical concerns. It was immediately apparent that I was in over my head. When I had taken my last biology class, the double-helix had barely made its way into our textbook. My familiarity with US patent law, let alone the kaleidoscope of international law on the subject, was at the level of the average citizen – that is nearly non-existent. And, although I am the Communications Director of the Markkula Ethics Center, I am not an ethicist. Fortunately, I could consult with colleagues who have expertise in these fields (and I’m married to a very patient scientist). I managed to put together a piece that didn’t embarrass me and satisfied my editor, but every single thing I knew about ethics and gene patenting was contained in that one article. A curious thing happened in the wake of that article’s publication. I began to receive requests to write for other publications on this topic. At first, I responded with some version of ‘Boy, have you got the wrong number.’ But, having discovered that my article is the second item that appears in a Google search on ethics and gene patenting, it has begun to occur to me that good discussions of this topic aimed at a general readership are obviously in short supply. That, I believe, has something to do with the way experts sometimes participate in the public discussion. In response to frequently expressed public concerns about the implications of such patents for what it means to be a human being, the attitude from the scientific and legal communities seems, quite frankly, to be on the supercilious side. “You don’t understand genetics,” the scientists harrumph. “You don’t understand intellectual property law,” the lawyers sniff. Well, yes. That is true and that is exactly the issue. By its nature, public policy-making is almost always carried on by amateurs. Legislators, whose background is likely to be in political science or law (usually not intellectual property law), will pass bills related to gene patenting. They will consult experts but they will also hear from constituents whose understanding of the subject does not even equal mine – just as scientists and patent lawyers have a shot at influencing public policy on, say, war with Iraq. We rely on military people to tell us if such a war is feasible or how to promulgate it but we do not hand them the decision-making power over whether we should go to war in the first place.