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					    Human
the Genome
    Project:
  1990 - 2005
I
     n 1990 when the Human
     Genome Project began, finding
     genes on a chromosome was like
exploring a vast continent with only a
                                                          The
                                                    Human Genome
                                                                                                    Whose Genome?
few landmarks. When the project is                    Project will                           There is really no such thing as the
finished in 2005, every nook and                                                             human genome. Rather, there are
cranny of that continent will be fully              provide detailed                         billions of human genomes, one for
mapped.                                                                                      each person who has ever lived.
                                                      maps of the                            While they are similar, they are not
Why Try to Understand the                               genes on                             identical.
Human Genome?                                      each chromosome.                          The Human Genome Project has
Human beings suffer from over 4,000
                                                                                             collected DNA samples from volun-
genetic diseases caused by faulty
                                                                                             teers around the world. These
genes. In addition, such common                   In its first five years, the Human
                                                                                             samples represent a mix of people of
conditions as cancer, heart disease,              Genome Project (HGP) has sped up
                                                                                             both sexes and many ethnic and geo-
allergies, and arthritis are caused by            the discovery of genes even faster
                                                                                             graphical backgrounds. Researchers
an interaction of genes and the envi-             than scientists had hoped. Regretta-
                                                                                             are now developing a representative
ronment. Exposure to radiation,                   bly, though, we are also finding that
                                                                                             map showing the areas common to
asbestos, smoke, etc. can trigger                 this new knowledge can be a double-
                                                                                             all of us (over 99.9% of the genome)
genetic changes in our cells that                 edged sword. For instance, we are
                                                                                             and the places where variations oc-
could cause disease. By fully under-              often able to test for a disease gene
                                                                                             cur. For instance, everybody has a
                  standing genes, we              long before we can treat the disease.
                                                                                             slightly different variant of the gene
                   will be able to test           Would you want to know you were
                                                                                             for eye color, but it does the same
                    for the presence of           going to get an untreatable disease?
                                                                                             basic job and it is in the same loca-
                    disease forms of              Would your family want to know? In
                                                                                             tion on everyone’s genome.w
       genes, develop new techniques              addition to mapping genes, the HGP
for preventing disease, develop new                    is studying how the ability to
medicines and treatments, and even                       learn about our genes will affect
correct faulty genes.                                     people. (See next page.)s




Human diversity: Each of us has a
slightly different version of the human genome.


4
                        A QU STION OF
                            E

Ethical, Legal, and Social
                                           ETHICS
                                           3) Privacy and Confidentiality: You
                                              have the right to keep the results
                                                                                     When is a Difference a
Implications (ELSI)                           of a genetic test to yourself. You     Disease?
ELSI researchers are studying how the         also have the right not to learn the   Until recently, a child born deaf
powerful new knowledge about our              results of a test. Should you keep     learned to live as a deaf person.
genes will affect people. They will form      private something that affects         Someday, genetic deafness may be
ethical guidelines by listening to what       other people’s health and well         correctable. Should people be forced
people like you and your family think         being?                                 to hear, or should society accept deaf-
and how you make decisions. There are                                                ness as “normal” in some people?
no right or wrong answers to these         4) Benefits and Risks: Knowing the
                                              results of genetic tests should do     Some conditions are unpleasant, pain-
ethical questions, and many “experts”                                                ful, or debilitating, so we call them
disagree about the best solution. How-        more good than harm, such as
                                              allowing you to get better medical     “diseases.” Other conditions, such as
ever, there are a few basic values or                                                being very short or overweight, might
principles that help guide their deci-        care. But what if there is no treat-
                                              ment or prevention for a condition     seem disadvantageous in some societ-
sions – and probably yours, too. Some                                                ies. If genetic research leads to “treat-
of these principles are:                      or a disease? Is knowledge, without
                                              the ability to act, harmful?           ments” for these conditions, will they
1) Autonomy: You should be able to                                                   be considered “diseases” by that
    decide for yourself whether to have    5) Justice: Genetic tests should be       society?
    a genetic test to learn about what        accessible to everyone. But who
                                              will pay, and for what kinds of        As we learn more about our genome,
    genes you have, and you should                                                   we will find that every one of us has
    not be tested against your will.          tests? Can information about
                                              genetic tests be used fairly? Will     some genes that are not “normal.” The
    But who decides for a child or                                                   Human Genome Project may force us
    teen?                                     laws that protect us from discrimi-
                                              nation apply to genetic conditions?    to redefine the concepts of “disease”
2) Access to Information and                                                         and “treatment.” It will be up to all of
    Informed Consent : You should be       Sometimes one of these principles         us to balance the effort to relieve hu-
    able to get important information      conflicts with another, as you will       man suffering caused by disease with
    about what a genetic test can and      read about later. Then people have to     the goal of respecting the rich diversity
    cannot tell you.                       decide which principle is more impor-     of humanity.
                                           tant in that situation.




                                                     How to Get There: “Enabling” Technologies

WhAt
          Hu en
                      o
                       if
                         ? Pro
                       me g stren
                   Gen ollin
                              ject gth

              man e contr eauty”
                                   or
                                           For centuries, people wanted to walk
                                           on the moon, but until we had the
                                           technology to get there, such explora-
                                           tion was impossible. Similarly, the
                                           Human Genome Project has to
                                           make progress in several
                                                                                     robots that analyze the order – or se-
                                                                                         quence – of the information in DNA.
                                                                                           Still others are developing power-
                                                                                            ful computer programs that
                                                                                             piece together these DNA se-
                                                                                             quences into a whole picture of
     the       g        f “b     this      technologies to reach its                         the genome. Other computer
. . . ified a s idea o might it do
       t        ’
  iden meone ”? How Could                  goals. While some research                        programs are building enor-
        o         e        ?
   or s lligenc be used d?                 groups are mapping the                           mous databases to store and
         te       n
     “in matio han g      oo               chromosomes,                                    analyze genetic information – and
            r       t
      info harm                            others are develop-                            to make it available to researchers
       m  ore                              ing faster and easier                         around the world. These “enabling”
                                           techniques for map-                         technologies make scientists “able” to
                                           ping. Some are developing                 reach their goals. You can read about
                                           techniques for working with the fragile   some of these technologies on pages
                                           DNA molecules that contain genes.         10-15.w
                                           Others are building machines and

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Description: human genome project (HGP) is a scientist from the United States first proposed in 1985, officially launched in 1990. United States, Britain, the French Republic, Federal Republic of Germany, Japan and scientists involved in the budget of 30 billion human genome project. According to this plan envisages, in 2005, the body should be about 100 000 genes in all the unlock code, while the spectrum of human gene mapping. In other words, is to reveal the composition of human 40000 gene in 3 billion base pairs of the secret. Human Genome Project and the Manhattan atomic bomb program and the Apollo program known as the three major science programs.