> Think about the anguish of those deciding whether to learn if they or
> their children have genes that forecast Huntington's disease, or
> increase the likelihood of breast cancer or dementia.
>
>Think about the anguish of knowing that there is a problem that you might
>be able to prevent or solve.
>
> Reflect on the uncertainties that already attend the relatively
> primitive genetic tests that amniocentesis offers the pregnant woman
> and multiply those dilemmas a thousandfold.
>
>Reflect on the uncertainties that attend people not knowing anything. With
>more sophisticated genetic tests you increase your certainty as to whether
>there is a problem or not. So what Delbanco is really concerned about is
>having decisions to make---or maybe the fact that the knowledge and
>decisions are available.
>
>
I usually prefer to use rational arguments to make my point, but a response
from personal experience is the best I can offer here;
Back in early '92, my Mother began to suffer from pain in one of her
shoulders. This pain, while not intense at first, did annoy her. Muscle
problems were suspected. After some time, she began losing sleep over it
as bit by bit it made things more difficult for her. Some days were
reasonably ok, others were hell. I can still remember the nights she would
be awake, often sleeping on the couch due to it (or at least attempting to
sleep).
This continued for several months, until it became obvious that this was
something more than some strange kind of muscle pain. At one stage my
parents called an ambulance. Funny thing was, the ambulance guy believed
she was faking it.
In early August, her case was given to a young doctor. But she was pretty
sharp. She noticed my Mothers' jaundiced features when everyone had
overlooked it. She ordered some tests, and got back the results - Bile
duct cancer. Pretty advanced too. The pain in her shoulder? It had been
spreading... They talked of chemo, but for this type of tumour and the
degree to which it had spread, that would be ineffective. A stent wouldn't
work either. Operating was out of the question. So they sent her home to
die, which she did after about 2 and a half months, most of which she spent
in a drug/pain induced haze and with the final few weeks in a nursing home.
As you can imagine, we suffered and mourned.
This cancer may very well be genetic, my sibblings and I may even have
inherited it. Would she have wanted to know through genetic testing years
before (Hypothetically, if it had been available)? Who knows. Would we,
her family, have wanted to know 5 or more years in advance? Perhaps not.
But putting aside our own human need to avoid "the pain of knowing", that 5
years might have been all the time she needed to deal with it earlier. To
make the decisions that might save or at least extend her life. Even to be
involved in experimental trials perhaps. The knowing might be painful, but
knowing alone can be half the battle. That extra time we might have gained
would have given us all the chance to do and say the things we never got to
say or do.
Of course, such technology is not yet available for a very large range of
illnesses. When it eventually comes, extensive genetic testing will arrive
far too late to be of benefit to my Mother. Perhaps it would have been
futile anyways. Perhaps it may not have been a predisposed cancer. But we
wouldn't dream of using these reasons to stop say, breast or cervical
testing. And for the thousands of women who make the decision to take
these tests, and who will take them in the future, they do so in spite of
the fear of that dreaded phone call. Does our own selfish indulgence of
our fear of knowing justify putting their lives at risk? Putting your
Mothers, Sisters, Wives and friends in jeopardy? Would you put your own
emotional comfort above the potential risks to your loved ones?
Within the limits of testing we can do today, yes, we should be trying to
find out as far in advance as possible. You may find nothing. But a life
may very well be saved or extended.
Watching the woman you respect most in the world curled up like a child and
muttering to herself, asking you if you can stop the pain, in between
incoherent ramblings while you look on, isn't noble. It's not dignified.
Gaining a few years of blissfull ignorance isn't worth it. And some day,
for the sake of the risk of your own discomfort, it could be avoided. The
writer of the article appears to have no conception of what "anguish"
really is...
Cancer has no redeeming qualities. It should be destroyed.....
Slainte,
James....
J & J Corbally ~ Eire
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