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What we thought on testing results and insurance policy

--- In responce to the decision made by the Department of Health of UK,
to allow insurance companies to see the test result of HD at-risk
individuals, press released on 13 Oct 2000---

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    *On the decision by the Government invites the division between HD folks
--- Genetic information should be used, only for getting correct diagnosis
and deciding treatment policy. I am against the idea of using it for
commercial purpose, as in this case in the UK.

--- (On the statemant "The approval of the two tests for HD will allow
insurance to be provided at normal rates to those who have a normal test
result.") Isn't it totally ignoring the people with abnormal test result?!

--- It means that if you want to pay the normal rate, then you'd have to
take the test. And if the result were positive, then you'd have to cope
with the psychological shock, as well as with the aspect of buying much
higher insurance. You can't blame me for being angry!

--- I cannot see this as any help for HD family at all. The family members
have to look after the patients, while having to face the fact that they
also are 'at risk' status. Day by day, we live with the question of 'whether
to know or not to know'. If our freedom of choice on this matter were taken
away, how to construct our own 'identity'?


    * Better social environment for better sense of security
--- We should consider, not only on the problem of insurance policies,but
also on the whole social environment to provide security for the HD family,
such as provision of long-term care nursing homes with rehabilitation
facilities, help and advice desk for carers, counselling for the people at
risk status, for example. If these are provided more solidly, our anxieties
brought by the uncertainty for the future would be considerably reduced,
hence their chosing 'adverse selection' feared by the insurance industries
could also be reduced.

--- As everyone in this listserve feels, there are pretty much anxieties and
burden of quite fundamental problems, such as daily care for patients,
the prospect of social security and so on, even before we start worrying about
insurance policies. You usually get payout form the insurance if you have
been hospitalized for a long time, or if you are sevearly disabled. HD
patients at their early stage cannot work, nor can they stay at hospitals
and concentrate on recupaeration.
--- I would like to see the social security system to provide better service
to those with positive test result. It is undeniable that the life insurance
is afterall, as a part of 'Business', so I would like the government to act
upon giving more aid to the people with high risk status.


    *Freedom of Choice
--- Insurance companies would have their own say as the 'business company'.
Also, we cannot hide the truth from our children for too long. Though the
best way is to to let things take their own course, it's unavoidable that
the children would suffer one way or another. But I don't think the third
party should jeopadize their privacy in any way.

--- The idea of introducing the legislation which forcibly makes all HD
folks to take up the life insurance while forbidding either party to
access the knowledge of the test result sounds reasonable. But then, what
happens to the right to know, and right not to know? At any rate, we have
more immediate and fundamental problems in Japan, caused by the severe
shortage of information and of specialized professions on HD.

--- There are only few HD patients in Japan, and there is always a sense
of isolation, caused by the lack of information given by the medical
community. But I cannot accept that to be the reason for us to be even
encouraged, let alone forced, to take the genetic test, however
consequential it is.




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