Ethical Questions - Implications of the Human Genome Project


11 déc. 2012 (il y a 9 années et 1 mois)

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Ethical Questions

Implications of the Human Genome Project

Benjamin O'Connor

December 2


011 assignment #3

"The main conclusion arrived at in this work... will, I regret to
think, be highly distasteful to many persons..
.. But we are not here
concerned with hopes and fears, only with the truth as far as our
reason allows us to discover it."

From Charles Darwin,
The Descent of Man

Proposal of ethical research ideas to the ELSI committee

For about twenty years now, gen
etic manipulation has been a scientific reality.
Throughout its existence, the field has also been, understandably, the subject of nearly
limitless controversy. This controversy exists today not only among the general public,
but also among scientists an
d scientific communities particularly on the subject of
human genetic research. Although the human genome project may appear on its surface
to be a rather "passive" research undertaking, its ethical consequences must be further
studied and understood. Un
derstanding the intricate workings of human DNA and
genetic interactions will produce a myriad of effects other than an innocent, passive,
genetic map and sequence. Knowing the workings of human DNA and the ability to
manipulate it can lead to tremendous
societal impact. We need to further study the
ethical implications of the genome project on the non
scientific public, potential effects
on society as a whole, and the general "bio
evolutionary" effects on the human race.

As more advanced genetic topics
begin to enter into the basic biology classes of
most students, public awareness and knowledge increases and will continue to do so.
For example, the U.S. Air Force Academy High School, a public high school located at
the Air Force Academy in Colorado has
been teaching a genetic engineering course
since 1981. According to the school's home page, "The Genetic Engineering course is a
full, yearlong course that is devoted to laboratory research in plant tissue culture and
recombinant DNA." (
, Air
Academy H.S.) This class covers such advanced topics as gel electrophoresis, plasmid
isolations, general use of restriction enzymes, gene isolation and ex
pression, and other
recombinant DNA techniques. Most interesting, and important, of all is the fact that the
class spends more than three weeks studying the ethical issues and dilemmas
surrounding these topics. This kind of high school course is, unfortu
nately, not yet as
common as it should be, and it is quite clear in the mainstream public that a general
mystique and reverence in some cases still surrounds the theories and practices of

The truth is that most people don't even know what a "ge
nome" is, much less
why large amounts of money is being expended in a large
scale, worldwide effort to
sequence and map human DNA. The tremendous controversy surrounding the now
infamous "sheep cloning" experiment was fueled by misconception. Cloning has

always had a generally bad connotation and seems to be surrounded by an aura of
unspeakable evil. Volumes of technophobic science fiction, such as Huxley's
New World
, deal with the predicted ills of genetic recombination and cloning. People's
tudes towards these experiments and this research need to be studied extensively.

How can these mappings and sequencing benefit the world when only a small,
educated, class of people know what it is? We need to study the role of the uneducated,
lay perso
n in this research, and more importantly the results of the project. It is
important to look very closely at the reasons behind those opposing the project itself,
and just as importantly those concerned with the possible effects of the project. The
ttee needs to make sure that ethical concerns are at least brought to light within
the scientific community and seriously discussed.

Not only do I have concerns about the benefits of this project not ever being
extended to the uneducated masses, but I a
lso worry about the unbalanced and perhaps
deleterious effects of unregulated genetic research and knowledge on our society as a
whole. Studies need to be done on possible regulation of this technology to investigate
the effects of knowing and manipulatin
g human genetic traits on our society structure.
Herein lies the source of much apprehension surrounding the ongoing discovery of the
human genome.

For the faint of heart, however, the creation of vast computer
banks of human concordance stirred not dr
eams but nightmares

designer genes and eugenic ghettoes. "If we are not careful,"
biotechnology critic Jeremy Rifkin said at the time, "we will find
ourselves in a world where the disabled, minorities, and workers will
be genetically engineered."

Allen, Lingua Franca, 29)

The new frontiers of genetic testing are the source for one type of concern. With
more knowledge about human genes uncovered by the genome project, more genetic
tests are already becoming possible. Who will have these tests ava
ilable to them in the
future? Surely, as it stands now, most people will never be able to pay for some of
these tests to determine the health of themselves as well as their offspring. For those
who will be able to get these tests, what will they be used
for? We seriously need to
stop and think about the consequences of widespread genetic testing. There is already a
tendency to rush tests out into the commercial market without even knowing the real
"meaning" of the test. The breast cancer genes are a re
latively good example of this
phenomenon. Multiple genes and hundreds of mutations have been found concerning
breast cancer and genetics. With little understanding about these complex genetic
interactions, genetic testing was promoted on a national scale
. As stated in Allen's
"Policing the Gene Machine" article, "The great race to unpack the breast cancer gene
had led to a virtual crapshoot." (Allen, 31) The tragedy of this rush to create marketable
tests and get money out of genetics would be an inaccu
rate, easily misunderstood
testing kit administered by inexperienced and improperly qualified and educated

Looking at the motivations that lead to this so
called "race" brings up another set
of ethical concerns that need to be studied. Like
almost no other field of scientific
research, corporations, entrepreneurs, and industry have embraced genetic research.
From the early beginnings of the field of genetics, the corporate world saw potential and
competed to invest in these new technologies
. The first reason for this was the
possibility of pharmaceutical production by bacteria. With genetic manipulation of
bacteria, mass production of human insulin in this way was possible, and that meant a
better, cheaper way to produce and sell insulin.

Production of Interferon was another
target of large investment:

"The prospects for huge new markets appeared particularly
impressive for substances that were expensive or difficult to make by other
means. Interferon figured prominently in such calculat
ions. Because this
substance is made by human cells in extremely small amounts, it had been
hard to obtain in pure form and to test clinically… Clearly, investment in
research and development for the production of interferon with recombinant
DNA was a gamb
le that could be worth billions of dollars if its potential
was realized." (Wright 343)

With increased emphasis on the financial benefits of genetic research, patents
were possible, and money was being made. Now, we need to study the ethical concerns
at come with large monetary investments in the field, and vested interests in the
human genome project. Many concerns arise that are similar to concerns that deal with
corporate and financial involvement in any area of scientific research. Concern arises

about how much the free flow and exchange of ideas will suffer under such a system.
With pharmaceutical corporations anxiously awaiting home marketable "test kits"
further research needs to be done first on the effectiveness of such tests, and just who
ould be qualified to administer them. More importantly, we need to be sure of just
who is qualified to interpret the results of these tests.

Another topic that needs to be studied concerning the potential effects of the
human genome project is the impl
ications of just what the results of these tests come to
mean, and to whom. The general concerns about "genetic discrimination" should be
studied. Who gets access to the results of these genetic tests, and who can administer
them for what reason are also

important questions. Although it may seem far
once employers begin to mandate genetic testing, or test employees in some clandestine
manner, the door is open to widespread genetic discrimination on the basis of possible
genetic defects, race, an
d heredity in general. At the time these concerns were arising in
congressional hearings and such, Al Gore, a U.S. Senator at the time was particularly
interested in such issues. "It was not an antiscience bias but rather an inchoate
discomfiture with th
e prospects of meddling in something as fundamental as a person's
genes." (Cook
Deegan 149) This "inchoate discomfiture" is indeed pervasive. Just ask
anybody on the street about genetic manipulation, and what should be done with cloning
experiments. Th
e controversies surrounding prenatal diagnosis is yet another area that
needs to be studied. The basic fact of the matter is that prenatal diagnosis will lead to

one of the most controversial issues of our time. These are some of the

that led to the founding of the ELSI committee on the human genome project
in the first place, and need to be examined perpetually.

Of all the possible effects of mapping and sequencing the human genome,
perhaps the most far reaching would be those tha
t affect the very essence of the general
human genotype. Now that man has the power to prevent and eliminate "mutation,"
what does this mean for species evolution and biological "improvement?" Up until now,
it is accepted, through Darwin's theory of evol
ution that mutations in the population are
responsible for variances, and eventually desirable traits prevail in the population. As
my high school biology teacher put it, the "sweepstakes winners" get to reproduce and
pass their traits on. I know that it

might seem far off in the future, but once we can
eliminate certain traits and foster more desirable ones, who decides what traits are good,
and what are bad? The fear is that everyone will end up predetermined to be a
"sweepstakes winner." Once again w
e have the threat of eugenics. This is precisely
why certain genetic manipulation could quite possibly be left alone, or even legislated
against, in the future. However, a call to end all genetic manipulation may not be in
order. Various genetic disease
s can already be detected at early stages in embryos.
More important, is the promise of gene therapy and "fixing" certain genetic problems.

It is accepted that these certain diseases that can be traced back to genes, such as
cystic fibrosis, downs syndr
ome and Tay Sachs, are undesirable things. Where do we,
as responsible biological entities, draw the line? That is a question that no single person
should answer. Variety is indeed the spice of life, and it is the fear of many reasonable
people, and mys
elf, that genetic manipulation will in many cases threaten that variety
which is the richly colored tapestry of the human race. Clearly, the prospects of creating
a national regulatory entity, with more authority then the ELSI need to be looked into
for t
he future.

It seems like long ago that scientists from around the world were peering into the
nucleus of the atom, trying to find its secrets for the "benefit" of all mankind. Today,
we still live with the consequences, both good and bad, of that scient
ific endeavor. In
modern times, scientists have looked into the nucleus of the living cell, once again
unlocking secrets for the "benefit" of mankind. The Manhattan Project is only surpassed
in sheer size today by our human genome project, which, like at
omic research, yields
mixed possibilities of social, ethical, and political issues that will have to be dealt with
in the near future.

Studying other large
scale scientific endeavors and strides for similarly lofty
innovations may lead us to the most im
portant insights about the ethical concerns of the
genome project. Also important to look at are those scientific topics that the public
actually cared about, and held opinions about. Indeed, very few have had the public and
media interest like genetics
and the genome project. Moreover, we need to look at the
influence of corporate investment, and the lure of financial gain, on important scientific
research at universities and independent laboratories. Once again the history
surrounding atomic energy is

an example. Research was fueled, not only by scientific
motives, but also by large investments by the government and a war effort. How that
played out in the 1940s and 1950s is an important thing to study when trying to learn
about the future trends of
research and results of the genome project. As always, it turns
out that one of the most important sources for information about our future is the very
past that we all share.