The Human Genome Project


The Human Genome Project is a worldwide research effort with the goal of
analyzing the structure of human DNA and determining the location of the
estimated 100,000 human genes. The DNA of a set of model organisms will be
studied to provide the information necessary for understanding the functioning
of the human genome. The information gathered by the human genome project is
expected to be the source book for biomedical science in the twenty-first
century and will be of great value to the field of medicine. The project will
help us to understand and eventually treat more than 4,000 genetic diseases that
affect mankind. The scientific products of the human genome project will include
a resource of genomic maps and DNA sequence information that will provide
detailed information about the structure, organization, and characteristics of
human DNA, information that constitutes the basic set of inherited
"instructions" for the development and functioning of a human being.
The Human Genome Project began in the mid 1980\'s and was widely examined
within the scientific community and public press through the last half of that
decade. In the United States, the Department of Energy (DOE) initially, and the
National Institutes of Health (NIH) soon after, were the main research agencies
within the US government responsible for developing and planning the project. By
1988, the two agencies were working together, an association that was formalized
by the signing of a Memorandum of Understanding to "coordinate research and
technical activities related to the human genome". The National Center for Human
Genome Research (NCHGR) was established in 1989 to head the human genome project
for the NIH. NCHGR is one of twenty-four institutes, centers, or divisions that
make up the NIH, the federal government\'s main agency for the support of
biomedical research. At least sixteen countries have established Human Genome
Projects.
The Office of Technology Assessment (OTA) and the National Research
Council (NRC) prepared a report describing the plans for the US human genome
project and is updated as further advances in the underlying technology occur.
To achieve the scientific goals, which together encompass the human
genome project, a number of administrative measures have been put in place. In
addition, a newsletter, an electronic bulletin board, a comprehensive
administrative data base, and other communications tools are being set up to
facilitate communication and tracking of progress. The overall budget needs for
the effort are expected to be about $200 million per year for approximately 15
years.
Lasers are used in the detection of DNA in many aspects of the project;
a very important use is in sorting chromosomes by flow cytometry. Lasers are
also used in confocal fluorescence laser microscopy to excite fluorescently
tagged molecules in genome mapping, in addition to other mapping uses. In
diagnostic applications, lasers are used with fluorescent probes attached to DNA
to light up chromosomes and to create patterns on DNA chips.
From the beginning of the human genome project it was clearly recognized
that acquisition and use of such genetic knowledge would have momentous
involvements for both individuals and society and would pose a number of
consequential choices for public and professional deliberation.
As Thomas Lee writes, "the effort underway is unlike anything ever
before attempted, if successful, it could lead to our ultimate control of human
disease, aging, and death".
Whatever its justification, the human genome project has already
inspired society with the hope of "better" babies, and one way to deploy
pragmatism in the analysis of genetic engineering is to look at this promise of
"better" babies in its social context: parenthood. Parents hope for healthy
children and, if they could afford it, make choices (such as choosing parental
care) to help "engineer" healthier babies. Genetic engineering seems in this
respect to offer the brightest hope for parents. Through germ-line therapy,
disastrous, but genetically discrete diseases, such as Huntington\'s and cystic
fibrosis could be removed from the DNA of the egg or zygote. Clearly parents
would follow the model in choosing to avoid a short, painful life for their
children.
Another more reasonable fear is that we have not the slightest idea what
we are doing and ought to avoid making hasty choices. Hybrid varieties are often
impossible to protect from the complexities and dangers of nature. In the human
condition, this is the possibility of making an error and creating a genetically
advanced baby who cannot cope with an imperfect world. While much of society
reports a willingness to modify DNA for the purpose of heightening intelligence,
education about genetics and medicine is still in its beginning.
Jonathan Glover argues for a "pragmatism of risks and benefits", writing
that, "The debate on human genetic engineering should