

Finding Risks, Not Answers, in Gene Tests - maya123
http://www.nytimes.com/2014/09/23/health/finding-risks-not-answers-in-gene-tests.html

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dkbrk
It is a fundamental principle of rationality that having better information
should not put you in a worse position.

The article quotes Dr. Kenneth Offit, the chief of clinical genetics at
Memorial Sloan Kettering Cancer Center saying these tests "because they could
be tested, not necessarily because they should be”. I think this is
representative of the attitude of the larger medical community; they're used
to performing tests in response to _something_ , and if they find something,
they follow a protocol dictating the steps to be performed in response. I've
heard a similar argument against full-body scans, saying that if a lump is
detected, it is likely benign, but it has to be investigated lest the doctor
become subject to a malpractice suit in the future. This is the case even if
the expected benefit of a biopsy is negative due to the low likelihood of
malignancy and the side-effects of a biopsy.

Fundamentally, medicine needs to change. In principle, doctors should choose
their course of action based on the expected outcome, incorporating all
available information. In many cases this action will be to do nothing. As
more information is gathered by the medical community as a whole about, for
example, the causitive relation between certain genes and diseases, the
underlying models dictating the appropriate action can be updated.
Unfortunately, until doctors believe they can take no action if they think it
best without being threatened by litigation, we're going to be subject to this
problem.

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Terr_
> It is a fundamental principle of rationality that having better information
> should not put you in a worse position.

Only when you ignore a lot of troublesome real-world issues, and:

1\. The information is completely free and there are no costs to acquire it.

2\. The information is private and was not shared or leaked to people with
other agendas.

3\. The human receiving the information is rational, and many are not.

I'm sure folks can think of a few more.

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bradddd
We're at a slippery slope where we'll simply need more data points to better
assess identification of medical predispositions based on gene analysis.
Unfortunately, the negative externality that forms, and the one referenced
when things like "should be" is said, pertains to patients' responses to this
additional information. We don't even have enough data to full reflect on how
patients are reacting to this information.

Right now, most medicine is reactionary-- confirming suspicions when patients
are presenting x symptoms. These tests, however, hope to be predictive, and
like many predictive aspects of life, will have associated confidence
intervals. People, especially with regards to their own health, will have a
hard time factoring in these odds when presented additional information.

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Someone1234
Even assuming these tests were highly accurate indicators of cancer, some
carriers might literally die before either they get cancer or suffer any ill
effects from the cancer.

Our bodies do naturally fight a lot of cancerous growths, which is why a
family with a gene which makes them more susceptible to XYZ might never suffer
from XYZ. The cells might grow out of control, then get nuked by the immune
system before they get too big.

I cannot decide if such generic tests are helpful or unhelpful. On one hand it
might make people extra vigilant to a certain condition, but on the other hand
do damage to their mental health as the stress of "maybe" coming down with
something deadly any day.

Plus family history seems a like more reliable as an indicator.

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technotony
Why on earth do these tests cost $4,000? You are just looking for a few snps,
23andme can do that for under $100. Presumably it's because of whose paying?

