We began this meeting two days ago discussing values and principles for a new biopolitics. I agree that a foundational step we must take is to agree on a core set of shared values that motivate us and common principles that guide our actions as we move forward collectively to engage the societal implications of human biotechnologies. But my focus at the meeting shifted in the working session on biobanks when several professors and I noted the reactions of many of our students to the collection and patenting of human biological tissues and genetic information. As Evelynn Hammonds reiterated that evening, many students respond to our concerns with a big “so what?” Not only do they see no harm in donating their DNA but they see it as a positive gesture even a civic duty for the sake of scientific progress. “After all, “ one student said to me, “You’ve been telling us all semester that DNA alone can’t really tell you anything about yourself.”
If our students don’t feel a sense of bodily intrusion or invasion of privacy, what IS the harm? And so my question as I listened to plenary speakers and participated in working sessions became, what is wrong with the current progression of human biotechnologies that we are so concerned about? Are there a common set of harms that alarm us and can lead to collective strategies to prevent them and ultimately a shared vision of an alternative approach to science and technology?
As I reflected on my notes last night, I came up with 3 main sources of concern we’ve discussed over the last three days: scientific illusion; commercial and corporate take over; and damage to democracy.
Scientific Illusion
The most simple response to our students is that they are victims of an illusion. They have been conned, duped, hoodwinked, and bamboozled. Michele Goodwin noted in the opening plenary the importance of distinguishing between what’s illusory and what’s real, and others followed with the basic imperative captured by the cautionary principle that scientists have the burden of proving that what they claim works safely really works and is really safe.
We are asking scientists to be scientific and to not promote folklore, myths, and hype. For example, Joe Graves pointed out in the working session on racial science that geneticists who claim that race is a biological category written in our genes are applying creationist and not evolutionary theory. In my book, Fatal Invention, I call this belief in the concept of biological races an enduring faith that has proven impervious to scientific evidence. Science has been responsible for giving racial folklore its superficial plausibility by updating its definition, measurements, and rationales without changing what the basic fairy tale is about: once upon a time human beings all over the world were divided into large biological groups called races.
Last night, Andrew Kimbrell criticized scientific illusion by saying just because we can land on the moon doesn’t mean we can go to all the stars and harness their energy to use on Earth. We now know that just because we can map the human genome doesn’t mean we can find a gene that causes cancer and test everyone for it and make a drug tailored to each person’s genotype to prevent it. And even if we could, it would not reverse our backward health care system where the sickest people get the worst care. In fact, without intervention, it will only intensify the system’s pathology.
As Dr. Hammonds put it, we need to get scientists to be transparent about the uncertainties. We need to expose when stem cell researchers and ancestry testing companies and surrogacy agents are engaged in hype and hoaxes either because of their own failure to ask the right questions or more often for profit.
Commercial and Corporate Takeover
Which leads me to my next harm, commercial and corporate takeover of human biotechnologies. In our table discussion after the opening plenary on values, we discussed adding to the leading bioethics principles a new one about commodification, except we couldn’t agree on what aspects of human life should not be commodified – blood, eggs, sperm, organs, DNA? But we could agree that human beings are more valuable than corporate profits and their lives, safety, and welfare should not be sacrificed on the altar of corporate greed under the guise of scientific innovation.
Damage to Democracy
In her powerful reflection on the Ashley X case, Pat Williams noted that the tendency to see everything from a consumerist perspective weakens our ethical deliberations about medical interventions. It also damages our democracy. In the words of David Winickoff, citizenship has been reduced to the power of a credit card.
Though genetic technologies are touted as giving each of us the power to manage our own health and even lives at the molecular level, this doesn’t mean they give us greater freedom, justice, or equality. By extending individual management of health to our genes, the state and big business exercise greater ability to monitor and influence our lives. As Brendan Parent’s brilliant performance last night showed, we are deluded into thinking technology gives us greater control over our lives, but it can also help those in power control us more effectively. And while we are expected to choose products and services that promise to reduce genetic risk (I like to say we are increasingly obliged to choose to use them), we can’t expect guaranteed health care for everyone who needs it.
The public’s acceptance of massive state collection of DNA databanks in the name of crime prevention and scientific exploration also permits the growth of a state authoritarianism that endangers the democratic freedoms of all Americans. It transforms the relationship between citizens and the government in ways that contradict basic democratic principles: government becomes the watchdog of citizens instead of the other way around.
Democratic Engagement
I think we also agree that we must contest this damage to democracy already underway with a radical democratic engagement with science and technology. This includes state regulation of human biotechnologies, but I would urge us to think of this intervention more broadly. While we might not be able to agree on the details of which technologies should be regulated and how (think of proposed bans on sex selection, for example), we can agree that scientists and big business should not have supreme authority to decide these matters. We should strategize about ways to achieve standing within powerful institutions of science and business and to create mechanisms for ongoing collective oversight and participation in the development and use of the technologies they produce.
Conclusion
There are people suffering across the globe because of obscene inequalities of power – racism, sexism, poverty, homophobia, discrimination against people with disabilities, corporate greed. And no pill, no implant, no gene map, no synthetic microbe, will end this injustice. Only social change will. In my mind, what draws us together is that we understand this and we see how science and biotechnologies have been enlisted to blind people to the need for social change and to keep them from joining together to achieve social justice.
We don’t have to accept the consumer citizen role being marketed to us. This new era of biocitizenship can be an opportunity for people dedicated to social justice to intervene collectively in biopolitics – not just to gain greater access to products of biotechnological research, but to change the relationship between biotechnology and power to create a more humane world.