Markkula Center of Applied Ethics

Listening Behind the Questions: How Experts Can Improve the Public Discourse on Gene Patenting

By Miriam Schulman

Let's acknowledge from the outset, this is not the kind of editorial 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 and practitioners, and ethicists to address the issue, 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 U.S. patent law, let alone the kaleidoscope of international law on the subject, was at the level of the average citizen-that is nearly nonexistent. 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-such as yourselves-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 don't hand them the decision-making power over whether we should go to war in the first place.

Given that in democracies, such essential policy making is in the hands of (hopefully) inspired amateurs, what should the experts do? I would call on scientists and attorneys to begin engaging in a new way in the public discourse on gene patenting. I like to think of it as "listening behind the question." I believe that behind some of the ostensibly silly concerns lay people express about gene patenting lie some profound ethical questions that need to be addressed by the experts. Let me offer two examples:

The Frankenstein Factor: This specter, which turns up so frequently in conversations about cloning, is also evident in general public reaction to gene patenting. People worry that scientists will cross some boundary into the forbidden territory of creation-God's country, if you will. Now, a scientist might pooh-pooh this concern as a misunderstanding of what is being proposed in any particular gene therapy. But "listening behind" this concern, the scientist might come to understand Frankenstein as a metaphor for people's reasonable concern about human dignity. Okay, so we are descended from the same primate as the apes, and 177 of 289 genes known to be involved in human disease can be found in a fruit fly. But isn't there something that makes us distinctively human, something that shouldn't be tinkered with or replicated? How do scientists think about this question?

The Frankenstein Factor also stands for public concern that scientists will muck around in our gene pool and create some kind of monster. Ridiculous? Maybe, but I personally would feel a lot more comfortable with experts in this area if they displayed a bit more self-consciousness about previous disasters. I'm old enough to remember when doctors thought it would be a good idea to irradiate children's tonsils, to give pregnant women thalidomide, and to prescribe hormone replacement therapy for every woman over 45-wait that was only last year.

An expert might argue that these are not failures of science but of medicine. Though this distinction is sometimes lost on us members of the hoi polloi, let's accept it for purposes of argument. Even so, the record of iatrogenic disorders suggests that unintended consequences happen. (Forrest Gump had a more colorful way of putting this) Doesn't the precautionary principle have special significance for anyone-scientist or physician-who wants to work on something so central to human identity as our genetic makeup?

Whose Genes are They Anyway?: In the Moore case, which came before the California Supreme Court in the 1970s but was not decided until the late 80s, John Moore argued that the valuable cell line developed from his cancerous spleen was, by all rights, his. He lost the case, but the question he raised is another one I think it's worth "listening behind." Average people are concerned about who benefits from medical research. They don't understand why they support research through their tax dollars-or in this case, out of their very persons-but the benefits are not shared very equitably. While there may be good legal and economic reasons why Moore did not deserve a share in the profits from his diseased spleen, that does not obviate the more basic questions: Who benefits from these new genetic technologies? Does current intellectual property law work toward the fairest possible distribution of these benefits?

The point is, the hesitations average people express about gene patenting are not always stupid and groundless. Scientists and lawyers might approach them less with the attitude of allaying trivial qualms and more with humility and a willingness to engage in dialogue. That means helping the public understand the science, the law, and what these mean for human well-being, which everyone has a legitimate interest in protecting.

Miriam Schulman is the Director of Communications at the Markkula Center for Applied Ethics, Santa Clara University.

This article was originally published in Pharmacogenomics, 4:4, 2003.


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