When confronting such pivotal debates and decisions we imagine ourselves a democratic nation and rhetorically desire the broadest participation. But at the same May 2000 conference at which Eric Lander made his proposal for a germline ban, US Supreme Court Justice Stephen Breyer told the audience of geneticists and science policy-makers that he believes genetic technology matters should first be shaped and "focused by previous conversations between...economists, scientists, the biotechnology industry, and those familiar with the operation of the capital markets." Only "eventually" does Justice Breyer see inviting "the public at large" to this "conversation." As an example of the wisdom of this approach, Justice Breyer pointed to the success of the Harvard Electric Policy Group in forging the consensus for deregulation of electric utilities.

Given the false promises and disastrous results of that deregulation, Justice Breyer's call for a best and brightest to predetermine the parameters of public genomic policy might seem somewhat problematic. Yet Justice Breyer was really doing no more than describing the existing reality, whereby a genomic cognoscenti is having a conversation to decide what questions will be considered legitimate, who will be allowed to ask them and who will be permitted to answer. Already, entire categories of questions have been moved beyond the bounds of respectable inquiry. For example, the conversation is such that no one in the United States may now legitimately dissent from the patenting of genes, even if the American College of Medical Genetics and James Watson are more closely in agreement with Jeremy Rifkin's call for a public trust to hold the human genome than they are with the biotechnology industry's desire to grow the list of Molecular Millionaires. Nor may one now advocate a temporary ban on genetic testing until appropriate protections are in place. Even though two successive reports by the now-defunct Congressional Office of Technology Assessment raised the option of a moratorium on workplace genetic testing as a means of protecting workers in lieu of strong genetic antidiscrimination laws, no such action was ever taken. In the meantime, the Republican leadership in Congress has successfully buried proposed genetic antidiscrimination legislation for the past five years.

Where can we look for an alternative to Breyer's paradigm of our genomic futures being determined by science and industry elites? At first blush, one might consider the groups formed by individuals whose families suffer from genetic disorders. But these groups are formed in the legitimately desperate search for cures. Only belatedly do they come to recognize the inextricable relation between genetic justice and social justice. Many of these groups have united in the Genetic Alliance, whose executive director, Mary Davidson, explains that often such groups come together to fund the search for the gene or genes responsible for their suffering. Only after the genetic source of their suffering has been found and they are informed that a cure is most likely decades away, she says, do they realize that protection from genetic discrimination might be needed. Some of the groups have also come to discover that the sample tissues and funds they donated in the search for the mutant gene have been used to create an exclusive patent for the research doctor and medical institution they turned to for help. They may also discover that neither they nor their group receive any portion of the royalties or licensing fees now required of those who use the genetic test developed with their help. In the case of Canavan's disease, for example, the Children's Hospital of Miami has attached a fee so large that some community screening groups have been forced to drop the test for the disease. Indeed, a 1999 survey by the American College of Medical Genetics indicates that 25 percent of doctors refuse to use certain genetic tests that they themselves developed due to concern over patenting or licensing issues.

There is also a further complication: Most of these groups, including the Genetic Alliance itself, receive substantial funding from the pharmaceutical companies and the biotechnology industry, and in some cases are very closely associated with them. This dilemma is best exemplified by a group called the Genome Action Coalition, which was initiated by a Washington, DC, lobbying firm several years ago in response to a vacuum of legislative leadership on human genome issues. Lyle Dennis, the GAC lobbyist, says that not only are the genetic disorder groups timid in pressing their industry funders on contentious issues but the pharmaceutical and biotech industries themselves cower before the insurance conglomerates that decide which drugs, medical products and procedures qualify for reimbursement.

The universities used to be a kind of bastion for publicly minded intellectuals and scientists. But with the passage of the Bayh-Dole Act of 1980, under which universities may patent their discoveries and license them for commercialization by private corporations, the universities have become intertwined with the biotech industry--indeed, they have in a real sense become corporate subsidiaries, increasingly driven in their research by the same motive for profit. A recent report of the Business-Higher Education Forum shows that American universities in fiscal year 1999 filed for 7,612 patents, executed 3,295 licenses and options with business, and received an adjusted gross licensing income of $641 million. Some prominent social scientists who might in the past have publicly criticized the diminishment of free scientific inquiry and communication tell me they are silenced by fear of retaliation.

Meanwhile, even many of those most prominently associated with the legal and bioethical issues of the human genome project are joining the private-sector ranks. Philip Reilly, formerly head of the Shriver Center for Mental Retardation, now serves as CEO of Interleukin Genetics. Stanford's David Cox, who served on the original Ethical, Legal and Social Issues Working Group of the genome project and the National Bioethics Advisory Commission, has become chief scientific officer of the Perlegen Sciences Corporation. Arthur Caplan, director of the University of Pennsylvania's Center for Bioethics, has joined the scientific advisory board of the Celera Corporation. The problem is not whether what they are doing is wrong, for they all continue to do interesting and important work, but rather to whom the public should look to defend its interests.

Asked whether joining the ranks of industry compromises his ability to serve as a bioethical guide, Caplan responds, "I think the genetic revolution is going to be privatized and going to be a business. It is simply inevitable." He adds, "I'm happy to be a handmaiden to industry as long as they don't mind my biting their hand.... I want to get in there early and try to make them responsible. Staying away from them makes no sense. I think you've got to go in there and push them. Am I optimistic? No. But it turns out Congress isn't any better than Celera. Celera gets the idea that it's very important for them to stand up for informed consent and consumers' right to know. They worry that they could get their business crunched if they don't." But a colleague of Caplan's, Penn medical sociologist Charles Bosk, wonders whether bioethics is inherently incapable of confronting ethical issues that challenge economic interests, such as gene patenting or "the replacement of professional values with corporate ones." And even if Caplan is right, the question remains: To whom can the public look to defend its interests?

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