Tracked Down by Our Genes

by Phillipe Borrel and Gilbert Charles
First Run/ Icarus Films, Brooklyn, NY, 2007
DVD, 53 mins., col.
DVD sales, $390

Reviewed by Martha Patricia Niño
Pontificia Universidad Javeriana
Cra 7 No 40 - 62

ninom@javeriana.edu.co

In 2003 the human genome project succeeded in identifying more than 20,000 genes in human DNA. This discovery can foster the development of unprecedented healthcare and medicine techniques. This DVD illuminates the ethical and legal issues generated by what is called the genetic revolution. The discussion revolves around questions, such as: What is race? Is there a justification for racial profiling today? How much can genes tell us about ourselves? What kind of improvements in human identification technologies can we expect in the near future? What are the main ethical consequences of genomics? Thus — in a less direct way — it also leads us to reflect what the limits of human experimentation in this field are.

The work is composed by several interviews of postgraduate anthropology students, like Marc Bauchet, who are undertaking research involving mapping genes for complex traits through scientific association rules and statistics. This research is carried out in association with professor Mark Shriver from Penn State University, who focuses his research on the genetics of normal variation in common traits that have applications in Genetics of pigmentation, ancestry and facial features. Bauchet has done intensive research, assisted by biological anthropology and sampling methods that include involving anthropometrical photos, images of the iris, devices for measuring skin pigmentation, 3D photos, and computer programs that interpret facial morphology, among others. The human populations portrayed as under study in the film were: European, Sub Saharan African, Asian, East Asian, American, Native American, Icelandic, Thai, Spanish, Basque, Armenians, Sicilians, Greeks Jews, and Finns. However, Paul Ferrara, who worked for many years as director of the State Department of Forensic Science, said that every ethical and legal precaution is taken in order to ensure proper use of personal information. He doubts about the efficacy of DNA profiling alone as the only valuable tool for forensic investigation since the world is more complicated than stereotypes based on race or place of origin, and we cannot really compartmentalize people like that in a global culture. This is very important when it comes to ensuring that the police will not be putting the wrong person away for life.

This research has promised to have applications in the field of forensics and law enforcement in which identification of an offender is a must. Racial profiling is a taboo topic in science, but it raises important questions about the right policies needed, since technological development on some novel discoveries seems to have a faster pace than the law itself. It also questions the boundaries of government control and the need for a proper legal framework in order to avoid genetic discrimination and other improper use of technology.

Companies like DNA Print Genomics, that have a favourable position in the market, collaborate with law enforcement groups in the U.S. and abroad through the program DNA witness. This software has raised some controversy since it gathers a lot of personal information among its users. Dr. Jonathan Beckwith –– who currently works in the ethical consequences of genomics and the social responsibility of scientists –– holds that DNA witness’ racial profiling criteria still need a careful ethical examination. Mostly because since the discovery of the genome, it was proven that we as humans have very similar genetic structure, and you can find more genetic variation between individuals belonging to the same race than within individuals of different races. He also expresses concerns about better ways to handle sensitive information about the patients’ medical records. In other words, they are working towards ways to avoid genetic discrimination based on the widespread diffusion of personal information for regular quotidian identification purposes. Interviewees like Sharon Terry actively participated in the making of the Genetic Information Non-discrimination Act that president Bush signed in May 2008. This law prohibits the use of genetic information in a way that could harm employment possibilities or health coverage of individuals. She also works as chairperson of the Coalition for Genetic Fairness.

Tracked Down by Our Genes discusses the professional duty of confidentiality among medical practitioners. This principle ensures that individuals seeking medical help should not be inhibited by fear that their medical concerns or conditions will be disclosed to others so that they can be discriminated. The only case in which a doctor can disclose personal data is when he or she needs to report incidence of a widespread health and safety threat, such as certain sexually transmitted diseases, child abuse, communicable diseases, or HIV/AIDS. When the information is disclosed for research objectives it usually does not contain patient identifiers. One example they give is a patient at Pitié-Salpêtrière Hospital in which two of her three sons have the marker of a cancer; in that case they recommended a follow up of the results and psychological support since it is not easy to accept the sad news. The positive side is that it is also possible to improve the life expectancy of a patient if you can know what to prevent based on their genetic weaknesses. The DVD also has interviews with activists that are concerned by the way in which people who use illegal drugs could be withdrawn from society due to the possible DNA damage.

The eugenic practices described in science fiction movies like Gattaca (1997) are not mentioned in this documentary nor any legal framework, but this is also an open question about the human role inside a society in which the fate of any unborn human can be potentially engineered. In such imagined society, your genes determine whether you can work or whom you can marry. It is almost unavoidable to think as well of the future possibilities for “human enhancement” for treating conditions such as disability and disease.