Einstein said: “God does not play dice”, Stephen Hawking says: “God does
not only play dice. Sometimes He also
throws the dice where they cannot be seen”; we are able to say: “God plays dice
and sometimes gets a bad roll”.
When nature gives us a bad roll, or deals us a bad hand, when the genes
are mixed up, the results can be undesirable.
It is then when these bad dice rolls are manifested in the form of
illnesses, illnesses that in general are classed as rare, but that however
affect a large sector of the population in different ways. They can have negative consequences for a
large number of people, from the patients themselves, to relatives and friends
and consequently, upon the society in general.
We, the sick minority, the ones that suffer neuro-degenerative
illnesses with different names, each one even more difficult to pronounce as
the 4,000 Spaniards with Amiotrofic Lateral
Sclerosis, or the 8,000 patients of Ataxia, and others of the more than 300
rare and incurable types of illnesses, each one different but with the same
feeling of pain and impotence because we know that tomorrow we will be at best
the same, never better…
We that see our days pass in wheelchairs, in beds, constantly depending
on the support of our nearest and dearest and with the compassionate looks of
strangers but without anyone to cure our illness…
We, children or adult, human beings with full rights, already born and
not frozen cells, do not understand the paradox that while there is no legislation
to stop cells being thrown away, frozen, abandoned or destroyed, these cells
cannot be used in medical research because of ethical problems, cruelly erasing
the hopes of thousands of patients, in whose hearts, already battered, begins
to shine a tiny light of hope…
We, the ones that never would do ill to anyone, even if it would improve
our own lives, because we know better than anyone else the effect of
progressive and continuous suffering…
We, innocent but condemned by life, that know from experience the
unfairness of life, also thinking of those who will in the future take over the
baton of the suffering in the lottery of the life…
We…
WE
MANIFEST
That we have the right to life, and if that right is one of the most
elementary of human beings, it should also be the right not to lose it and to
improve it, and therefore we support the investigation with embryonic mother
cells with a therapeutic purpose, with the full conviction that this will not
break the rights of other human beings and that our institutions will be
guarantors of it. And in the same as
electricity is good in spite of the existence of the electric chair, we can not
demonize beforehand something which has the risk of a criminal and illicit
use. This risk must be avoided but not at
the expense of not healing patients, not at the expense of our right to life
and to health.
It is a duty for any state to make available to society all the
resources that can improve its quality of life.
It is the right of the citizens to access or not those resources. But it is fundamental that governments
support and stimulate the investigation in a field that offers solid hopes to
people affected by illnesses of genetic origin, as is the case with the
investigation using pluripotential cells. Therefore, we ask, we even require that the
states, that should protect all of the society, that they legislate from an
ethical point of view, not tilted towards any particular religious beliefs, and
not submit to the pressures of groups that want to impose their particular
moral views.
Accordingly, we call on all social sectors and good people everywhere
not to look away, because, unfortunately, maybe in the future they could
desperately need these therapies themselves; and to join together to express to
their representatives their support for this investigation and the need to
develop the appropriate procedures to use in the research on the spare embryos
from the in vitro fertilisation; as according to the experts, of the 35,000
frozen embryos, 85 percent will no longer be viable because of the damaging
affects of the cryogenic process. Furthermore,
as citizens, we ask that each of us should know their place in a democratic and
ethical “state of right”, knowing as we do that our lives are in the hands of
people with very strong views about what is right for everyone else, views with
which those below them in society do not necessarily agree; and conscious that
our future hangs by a fragile thread tied to political interests and a
different understanding of what is ethical, since a state should not be
dictated by a religion but by the principles of humanism.
It is somewhat trivial, given the urgency dictated by the suffering of
many patients, to lose time in sterile polemics that only postpone the
inevitable; as the science advances, this work will be done sooner or later in
other countries, and inevitably Spanish researchers will move to those
countries. And if that is correct, why
are today’s patients condemned to death?
Written by Alberto Suárez de las Heras
(sufferer
from Friedreich Ataxia,
Villaralbo-
Zamora-
Translated by Dacil Pino Brumberg