"PARTICIPATING IN THE BIOTECH INDUSTRY:  NOTES ON THE GENE TRUST"
                                                                            [by Eugene Thacker 2000]

"Because the information you give us today will continue to make a difference for the generations to come."
                                                                         - DNA Sciences, Inc.

1. Entrusting Your DNA

This past month, DNA Sciences, Inc. announced the creation of the Gene Trust <http://www.dna.com>, the first, large-scale, organized DNA-sample bank. Based on a volunteer-basis, interested individuals can register and send in blood samples for DNA analysis and archiving. As an information-business, The Gene Trust will gather genetic samples from a range of individuals, with a range of medical conditions. Such information will help pharmaceutical companies and research laboratories to speed up the process of therapeutics, drug development, and clinical trials.

The Gene Trust is enabled by many scientific, technological, and social factors. Most immediately, the two-fold effects of the human genome project (Celera Genomics) and the rise of telemedicine (websites such as WebMD), have paved the way for a more integrated approach to "infomedicine."

The genome project not only reiterates the centrality of new technologies in science research, but it also reconfigures, in a more explicit manner, the ways in which molecular genetics is all about informatics.  With the pragmatic emergence of bioinformatics, the genome project has shown the ways in which databases, online uploads/downloads, the data analysis software are quickly becoming the medical tools of the future.

Such an emphasis on infotech is also behind the various attempts to instantiate, in practice, a telemedicine. But telemedicine is not only about the medical use of new computer and network technologies. It is also about transforming patient care and diagnosis, which means that, as an object of diagnosis and treatment, the patient is increasingly reduplicated by an electronic double - a patient data-file or dossier. While the remote physician is certainly concerned with looking at and examining the patient, telemedicine relies equally on the role which data extracted from the patient's body plays (through informational files or medical imaging technologies).

2. E-Profile

The Gene Trust makes it easy to participate in the biotech industry. An interested individual undergoes a series of information-extraction procedures in order to composite a data-profile for the Gene Trust database.

- Online registration (basic identification information)
- Online health/medical information (basic health-related information)
- Blood/DNA sample (locally-administered, shipped, then analyzed)
- DNA sample analysis archiving (encoding and uploading)
- Offering of local and online services (database access, personal and
corporate services, genetic-medical services, etc.)

What these procedures culminate in is a circulation of biological data.
>From blood to databases:

blood >> medical information >> databases >> research/diagnostics >>
patient's body in clinical trial/therapeutics

The important thing in this equation is the biological data, irrespective of the medium which carries it. Whether it is a biological body or a database, the central concern is that the (genetic) data in there, free of any noise. This is a classical approach to information, first formulated by Claude Shannon & Warren Weaver during the 1950s, in conjunction with Bell Labs. Contrary to McLuhan's dictum, the medium is not the message. Rather, more in line with post-war information theory research, the message is all that counts; the medium is transparent, simply not part of the equation. Information becomes disembodied across media, "information" in this sense is a form of digital DNA (genetic information in binary-digital format for computers).

3. Data-Patients

While, on the research and development side, the Gene Trust is exemplary of many biotech endeavors, on the consumer/patient side, it is at the forefront of producing a new type of relationship between medical practice and the biomedical patient. In short, the patient or consumer - who supposedly takes part in and ultimately benefits from the Gene Trust - enters into a unique relationship with his/her own information. The medical patient becomes a "data patient."

The data patient is characterized by several constraints, all of which relate to the relationship between patient body and the medical use of computer technology.

- The physical, biological body of the medical patient must be translatable into computer-based information.  Anything that cannot be encoded will either be designated as supplemental, or fully excised from the data patient's profile.

- All medical diagnosis, treatment, and communication in the telemedical context will take place via information and information technology. This means that even personal consultation may involve remote physicians or technicians. One of the top priorities of medical treatment will therefore be the dataset relating to the patient.

- The data patient will constantly be redoubled by an electronic double, their digital profile.  In a sense, the real patient will have to constantly negotiate with this data-double, so that they correspond to each other. This does not only mean changing the data in computers, especially when that data is used to make important health-related decisions.

The cycle starts when the medical patient's genetic body is sampled and encoded. From there a loop is initiated, in which the patient's biological body must always first answer to his or her telemedical profile. The types of drugs needed, the types of therapy best suited to this patient, will be decided at the level of informatics first and foremost (this is the basic logic of pharmacogenomics).

The patient's biological body will have been diagnosed and treated with no mention of the phenomenal condition of embodiment, the blatant gap which currently exists between "wet" genetic molecules and digital codes, or the dynamic and flexible quality of the body.  Just as today's tele-robotics assisted surgeons intently stare at a video monitor and not the patient, so will the telemedical physician first look at the patient's DNA sample and the software diagnostics.

The point here is not to simply go back to those pre-computer days of Galenic bedside medicine, endlessly listening to the patient's testimonies. But we should also be very astute in assessing how much qualitative progress Western medical technology has given us.  This data-patient in genetic therapeutics and telemedicine presents us with a classical case of Baudrillardian simulation. Because patient data cycles back upon and ultimately affects the physical, real patient, there is a confusion of where to locate the object of medical attention; in a sense the real patient is preceded by the data-patient.

4. Biodata Economies

The curious thing to note is that, in some sectors tightened regulations concerning research on discarded embryos, the FDA's recent regulation of human tissue businesses, and the ongoing ethical debates concerning human germ line cloning, all continue to draw controversy. Why is this curious? Well, precisely because there is basically none of the same, almost alarmist concern over the growing business of biological data, from gene banks to telemedicine.

The commodification of human flesh (be it organ-harvesting or engineered cells) seems to have a resonance that genetic data on a computer server does not. There are exceptions, of course - namely, the popular debate over genetic privacy. But these are issues of individual, legal rights to privacy, not over the very existence of the technology and the science itself. The controversies surrounding genetic privacy,
DNA fingerprinting, and the issuance of patents often assume the valid existence of the technologies they are debating; rarely are the validity and legitimation of the science and the technologies themselves under question.

As its name indicates, the Gene Trust represents itself as a form of voluntary, altruistic investment. As a long-standing legal concept, a "trust" involves a relationship between a property owner, and a property manager, where the latter is entrusted with the property of the former, with benefits going primarily to the property owner (in the same way that one entrusts one's finances or one's business to someone else).

Economically speaking, an investment trust (also called a closed-end trust) involves a financial organization which gathers the funds of its shareholders, and then invests them in a diversified securities portfolio. Simply put, securities (such as stocks) confer ownership of something which is not in the owner's immediate possession; it is a means of rendering property, and materiality, virtual.  The owner of a stock can, theoretically, demand the right to receive the property designated in the stock, or, of course, the stock can be traded. As such, stocks can take on a free-floating fluidity - as informational value units - which significantly, if only momentarily, detaches them from any material substantiation. Most investment trusts hand over the majority of the management and control of the funds to the financial organization. With a fixed number of shares, the value of the portfolio will depend on the status of the supply and demand for certain types of shares in the market.

We are already witnessing a massive virtualization of finance capital (the actual technological implementation in e-trading is, perhaps, only its latest phase). What happens when we consider an investment trust based on the body? As patenting debates in the past have illustrated, one of the first transformations is that the body becomes, more specifically, biological property. Now, bodies as objects certainly have their own convoluted history (in labor, sexuality, cultural stereotyping, etc.), but in the case of the Gene Trust we're really talking about a very specific kind of body. This body is, simultaneously genetic and informatic. It is genetic because what the Gene Trust is interested in is not personal testimony, patient-described symptoms, or even past medical records. The Gene Trust is centrally interested in a molecular pattern that is commonly "read" as a sequence of letters. In contemporary biotech research, that also means that DNA is translated into information, for computer-based analysis and diagnostics. This is a kind of body, framed by informatic and economic concerns, which we might call a "bioinformatic body."

As the basic logic of the legal trust indicates, the ownership of this biological property is defined by its absence (the stock holder does not actually have the property designated in the stock).

The Gene Trust, though it may communicate the best of intentions, actually has a two-fold agenda, in that is means "investment" in two different ways. First and foremost, the Gene Trust presents itself through a rhetoric of an altruistic, biomedical humanism. The investment alluded to here is made possible by the over-arching category of collective human well-being. At its basis is a biological essentialism, which implies that, because we are all the same genetically, volunteering for the Gene Trust is an investment in the future of human health. In fact, the sound-bite advertising phrases on the website push forth micro-narratives (the young woman whose aunt has Alzheimer's, gaining a sense of "participating in history" by helping researchers combat disease). All of us have had some experience with the often traumatic effects of disease and death of those close to us. Despite this, however, neither the human genome projects, nor its spin-offs such as the Gene Trust, have mentioned the fact that scientific research still does not know for sure whether gene "cause" devastating diseases such as cancer. And, the complex effects of biological networks, as well as environmental influences, has yet to be considered in a serious manner by researchers.

In addition to these rhetorical techniques, we must also remember that the Gene Trust is also a business - as their website states, DNA Sciences, Inc. is in the business of information (specifically biological information), and it is thus among a great many information-providers, which include Celera Genomics and deCODE Genetics. In this sense, it also depends a great deal upon the investment of its own securities, the bio-data to which research institutes and pharmaceutical companies will buy access. The Gene Trust's central asset will be its databases and the diagnostic and medical information it can tease out of that genetic data. What the Gene Trust volunteer donates is less their body and more bioinformatic value.

Under a broad category of medical altruism, the Gene Trust promises a future of humanistic returns (the DNA sample you supply now could save a life in the future). In the meanwhile, the more short-term circulation of bio-data enables the Gene Trust, as a privately-funded venture, to gain immediate economic returns.

5. Body, Technology

This gap, between the scandals of marketing human biological materials (something which, in a much more sober sense, is a part of routine laboratory work), and the technical benefits of online bio-databases, needs to be addressed. Why do we feel threatened when we hear horror stories of human organ black markets, and not when Celera Genomics announces the privatized completion of its human genome database?

Perhaps part of the problem is that, too often, in the public eye, and within mainstream bioethics, the wrong kinds of questions get asked. Or, to put it another way, certain kinds of questions get asked, ones which reduce phenomena to a humanist polarity between the essentialist reliance on nature, and the age-old fears of autonomous, threatening technology.

But if bioethics - or rather a bioinfo-ethics - can both see how bioinformatics is a unique kind of commodification of the body,as well as how the human tissue business is itself a technology, then we can begin to understand how the apparently clear division between "body" and "technology" is being radically transformed in biotech.

References

Celera Genomics <http://www.celera.com>.
DNA Sciences, Inc. "Consumers Invited to Participate in Nationwide
Genetic Research Initiative." Company press release. PR Newswire (1
August 2000): <http://www.prnewswire.com>.
Foss, Laurence, and Kenneth Rothenberg. The Second Medical Revolution:
>From Biomedicine to Infomedicine. Boston: New Science Library, 1987.
The Gene Trust <http://www.dna.com>.
Shannon, Claude, and Warren Weaver. The Mathematical Theory of
Communication. Chicago: U of Illinois, 1963 (orig. 1949).
WebMD <http://www.webmd.com>.
Wong, May. "A New Approach: Company to Launch Internet-Based Gene
Research Project." ABC News online (1 August 2000): <http://abcnews.com>.