Personal Genome Project: The End of Privacy
Vladimir Kharitonov, "Private Correspondent"
A few days ago, all information sites were bypassed by the news that the first ten people decided to make publicly available their DNA analysis data and detailed personal medical information as part of the Personal Genome Project (PGP). This was announced at a press conference on October 20, 2008 by the participants themselves and his supervisor, a geneticist from Harvard University, George Church.
Unlike the well–known Human Genome Project, in which for the first time it was possible to decipher the entire human genome (quite specific - one of the founders of the project, Craig Venter), PGP does not involve decoding the entire DNA of the participants. Approximately 1% of DNA will be used, only those parts of it that encode proteins. But the participants, as George Church hopes, should be 100 thousand.
Moreover, each of the volunteers will have to pass a kind of exam for knowledge of the basics of genetics and be aware of what he is doing and what exactly he agrees to. And he will have to agree that, after passing the selection test, he will provide scientists with detailed information about himself, the biological and medical side of his life, from waist size and culinary preferences to medical history. Only after that, blood, mucosa and skin samples will be taken from the project participants. These samples will become the material for DNA analysis and personal microbiome, that is, determining which microbes and bacteria the body of the project participant gets along with.
The main task of the project is to determine the relationship between the genotype recorded in our DNA and the phenotype, biological and medical parameters of the human body. The correspondence between the personality of a particular person and all the biological information obtained can be partially erased, but all this information will be available for analysis to the entire scientific community, as well as, at the request of the participant, to all his colleagues on the project. However, this applies not only to biological information: almost all information related to the project will be open. George Church made public information about the Polonator G.007 sequencer developed by his team, the main device that, in fact, analyzes the DNA of the project participants.
Despite the importance of the Personal Genome Project for the development of biology and medicine, thanks to which statistically reliable data on the correspondence between genes and human health will finally be obtained, among the reviews of the first steps of the project, most attention was paid not so much to its scientific side as to the determination of the first volunteers.
They were not afraid of making public the most personal information about themselves, the information that usually not only constitutes a medical secret, but also just those that are not accepted or inconvenient to talk about. The project participants did this quite deliberately, making a choice between preserving privacy, privacy and supporting science and, possibly, their health (in the course of research, scientists may find some unexpected and unpleasant information about the state of their health for the project participants).
On this occasion , George Church remarked: "I always say that the biggest problem in life is not to hide what you have so that no one will steal it, but to find someone who can use it. Stop hiding it, and the probability that it will be useless will decrease to almost zero."
Among the first volunteers who took part in PGP was the well-known Internet figure Esther Dyson, author of several books on the development of the Network and modern science, an active investor in biotech startups and, by the way, a member of the Supervisory Board of LiveJournal. In the September issue of Scientific American magazine, just devoted to the problems of privacy, an article was published by E. Dyson, in which she formulated the main contradictions arising between the traditional desire to preserve privacy and the realities of modern advanced technological civilization. Dyson notes that, for example, the disclosure of certain personal information (for example, passport data or mother's maiden name, which should still be kept secret) is not a violation of privacy at all, but a security issue. However, personal security itself may, in some circumstances concerning, for example, health, suggest the desirability or even the need to disclose some personal data. And the personal genome research project is just one of many examples of this kind. Comprehensive medical and genetic data of individuals are important not only for their treatment, but also for the study of epidemiological diseases.
Ten years ago, the remark of the head of Sun Mycrosystems, Sam McNeely, about privacy – "Forget about it!" – sounded like a provocation. But she stated the reality of the impending threat to privacy, which is carried by the uncontrolled use of high technologies, primarily information. An even greater threat is posed by their too well-controlled use by the state or by intruders. Of course, computer technologies (also used in biology) simply facilitate this task by providing opportunities for collecting information and, even more, for its transmission and dissemination. However, there is also a parallel process in the technological sphere – the development of information security tools. Technology does not create problems, rather, it exacerbates them.
The current technologies of surveillance and comprehensive collection of information, including about private life, have reached even greater heights (in the literal sense of the word, if we recall the observer satellites flying over our heads). But here's the paradox: not only is there an increasing concern in society about threats to privacy, but there is also a proliferation of almost the opposite attitude.
Before every second "diary" in Livejournal, it would be worth putting an epigraph "Modern man is a monster of recognition" (Michel Foucault), and a kind of social exhibitionism becomes a fashionable way of life: you don't have a LiveJournal, but maybe you use Twitter, notifying the whole world about the idea that just came to your mind thoughts and sharing joy about the caught carp?
Partial (and most importantly – conscious and controlled) rejection of privacy in favor of public openness – opinions, relationships, actions, finally – turns out to be another, but no less desirable or necessary personal life strategy. All the more pragmatic if it finds social support, and all the more far-sighted, since it is about life itself, as in the case of the Personal Genome Project. After all, in addition to privacy as "the right to be left alone" (Louis Brandis, judge of the US Supreme Court), there is also the right to life and the right to live in society with other people.
Portal "Eternal youth" www.vechnayamolodost.ru05.11.2008