Addicted to Genetic Optimism

On May 11, 2006, Susan Lindee, PhD and author of Moments of Truth in Genetic Medicine, spoke at a symposium at Amsterdam’s Free University (it’s no more free than any other). She flew all the way over from the US to lecture on this subject for one hour. The unpopularity of her views was illustrated by the emptiness of the lecture hall. What a mistake the people who did not come made! Lindee is a charming speaker who packed more information into that short hour than many a lecturer does in a semester.

A synopsis could not do her lecture justice. Let's call this touching a few of the points she brought up:

Three years ago (in 2003) the world celebrated the 50th anniversary of the discovery of DNA – the double helix – by Watson and Crick, who received a Nobel prize for it. The popular German magazine Der Spiegel featured on its cover a picture of a naked man and woman, apparently conforming to the artist’s perception of beautiful, perhaps expressing the hope that this discovery would lead to the means of developing perfect people.

In the fifties of the twentieth century, most physicians didn’t care about genetic disease. Today medical research is organized in a way that propels it in that direction. Genetics, also called genomics, has zoomed into enormous importance. Almost all disease is seen as fundamentally genetic.

The genes hype in medicine and research has spilled out into the general public. Genes have consumers. In the US you can buy do-it-yourself-at-home DNA test kits. They purport to confirm, for instance, native American (“Indian”) descent. Such status brings financial and political benefits. African Americans are persuaded to believe that DNA testing can reveal from which tribe they are descended. These are factors of an industry in the US that markets race and allows people to purchase a racial identity. Therapies, too, are supposedly based on racial differences.

The Human Genome Project claims to salvage DNA’s precious recourse for human history. It is concerned with indigenous peoples. Their DNA is believed to harbor historical and medical secrets. Notably the indigenous people whose DNA is documented do not pay for this service. The DNA is taken from blood samples. This testing is of a different caliber than DNA tests marketed to financially comfortable people who pay for them. For those the DNA is taken from cheek swabs.

Nowadays genes have been popularized. They are invoked in a wide range of hardly relevant contexts. A brand of perfume is called DNA. Fine print on the label informs “This bottle does not contain any DNA.” Automobiles are ascribed DNA in advertisements. More seriously, judges refer to DNA in their rulings even when no DNA test has taken place, so on the basis of assumptions.

DNA has become an enormously powerful concept. It has become part of “trash culture” such as soap operas, comics, and advertisements. But it is also very much part of the elitist scientific culture, and enjoys enormous funding. It has become part of a technical way of understanding disease endorsed by physicians, researchers, government, and consumers. Not only diseases but also behaviors are ascribed to DNA.

One group studied in 1962 for its hereditary secrets are the Amish. They were chosen not only because they are a closed society with a limited gene pool, but also because their religion values genealogy, so they keep meticulous records. A record of illnesses can be found in their newsletters, as they encourage praying for the sick. This illustrates how making a pedigree (she means mapping heredity) is a social process as well as a scientific endeavor.

Twins have also extensively been the focus of studies on heredity. For this their zygosity must be established. A Swedish group studying twins in 1961 established it by asking them “When you were little, were you like two peas in a pod?” When controlled by methods for establishing zygosity available at the time, such as blood type and fingerprints, the twins’ own responses to the peas-in-a-pod question was found to be 98% accurate. This is an example of the two-way interaction between science and society or “folk knowledge”. Like people seeking to purchase a racial identity, twins in the US curious about their zygosity can now purchase a DNA test.

Faith in folk knowledge is illustrated by a study in which students were asked, if they wanted to grow beets, whom would they consult? An expert in the chemistry, biology, and agronomy of beets, or an untrained but experienced beet grower? The overwhelming majority chose the latter.

Science benefits from folk knowledge, and in turn, folk knowledge lends legitimacy to research. Not only geneticists, but also lay people promote the field of genetics and consider it important. Genetics is a particularly popular doctrine in the field of mental health.

Genes are widgets. They are valued in a society that accepts that high-technology surveillance of the body is morally and socially desirable. Francis Collins, the director of the US National Human Genome Research Institute and a biological optimist, has predicted that by 2010 there will be a genetic test for behavioral conditions, by 2020 there will be genomic drugs, and by 2030 those drugs will be standard. However, by 2020 a major anti-technical movement opposing genomics will arise and delay genomic and technical development.

Actually, this movement has arisen already, as illustrated by the play Reinventing Eden. It was followed by a panel discussion on human genetic engineering, in which Lee Silver spoke of a “techno-eugenic rat-race”.

UK’s Sara Sexton points out that the vast majority of diseases have nothing to do with genes. Yet physicians, researchers, and the governments and institutions who fund them remain fascinated with genes, preferring them to other areas of medical research.

The old eugenics had no impact on the gene pool. The species is still the same today as it was when eugenics were implemented. The new eugenics may well have an impact, but that impact could be quite different from its goal. All technological interventions have unexpected impacts. Antibiotics, for example, as we know, have been a boon for curing infectious disease, and at the same time have led to the development of evermore aggressive strains of disease-causing bacteria.

In a gene-conscious society reproductive options could be drastically different. Hesitation around these technologies comes particularly from consumers. Surprisingly, the Christian Right in the US generally supports genomic research. They see it as an alternative to the A-word: abortion. Presumably the link is that potentially defective individuals could be identified before conception, not after. To date we don’t have effective treatments for genetic diseases, and the best way of preventing them remains screening embryos.

What many people don't realize is the vast economic interest of genomic research. When universities tout its supposedly tremendous potential benefits to humanity, they remain silent on their ties to industry. For instance when James Wilson was brought into Pennsylvania State University with great fanfare, no mention was made that he at that time already owned a company for the production of genomic drugs, and the dean of the medical faculty owned the patent. Perhaps the death of clinical trial volunteer Jesse Gelsinger has been a setback for gene therapy research. (On his website, Robert Helms states, “Jesse Gelsinger died trying to do the world some good, and three researchers walked him toward his death trying to be first to find a very profitable scientific breakthrough.”)

In response to a comment from the audience, Dr. Lindee confirmed that of course a lot can go wrong with a person after conception. Most misery in the world has nothing to do with genes. Research in the sixties has identified good nutrition in childhood as the single most predictive factor of success in later life.
But genes continue to capture the attention.