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Jerry Weinstein, asthma

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  • Diane Mew
    Dear Jerry, I m glad you liked the play, though many of the Tristan islanders in Britain didn t seem too keen on it - it is very fictionalized, and doesn t
    Message 1 of 5 , Feb 1, 2002
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      Dear Jerry,
      I'm glad you liked the play, though many of the Tristan islanders
      in Britain didn't seem too keen on it - it is very fictionalized, and
      doesn't give a true picture of them nowadays. But if it is good theatre,
      that is what is important.
      Now on the asthma. Dr. Noe Zamel, of Mt. Sinai Hospital here in
      Toronto has been to Tristan twice. In 1993 he took some blood samples.
      He then teamed up with Sequana Therapeutics, and went back to Tristan in
      1996, with Carrie le Duc, this time to collect samples from all the
      islanders for further research. On both occasions he had the permission
      of the island Council - without which he would not have been able even
      to land!
      But why would there be any outcry? and from whom? The islanders
      received Noe and Carrie with their usual courtesy and kindness. They
      were pleased to make even a small contribution to the research that
      might eventually help thousands of sufferers. When the team left, they
      were given a big party. And when I was on the island in 2000 the
      islanders still had kind memories of Dr. Zamel. In fact, although the
      islanders did not ask for money, they did get new equipment for their
      little hospital, including, I think, an ultrasound machine. The hospital
      was badly damaged in the May 2000 hurricane, so I don't know whether it
      is still there.
      Good luck with your research. Tristan, like Shackleton, seems to be
      very popular these days. But it is a fascinating place. Yours, Diane
      Mew, Toronto.
    • markalastairsilverman
      I very much enjoyed Further when I saw it in London but I m curious to know what exactly Tristan folk thought of it. Lorna Lavarello told me she went to see
      Message 2 of 5 , Feb 9, 2002
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        I very much enjoyed Further when I saw it in London but I'm curious
        to know what exactly Tristan folk thought of it. Lorna Lavarello
        told me she went to see it but I haven't heard from her since she
        left this group.

        Although it is of course fictionalised, as an outsider, I felt the
        play - though its wonderful prose and choice of plots, sub-plots,
        themes and vehicles (eg the penguin eggs) - provided an excellent
        portrayal of life in an isolated place (and subsequently in England)
        in the early 60s without over-romanticising or patronising Tristan
        and its people.


        --- In tristan-da-cunha@y..., Diane Mew <mewedit@s...> wrote:
        > Dear Jerry,
        > I'm glad you liked the play, though many of the Tristan
        islanders
        > in Britain didn't seem too keen on it - it is very fictionalized,
        and
        > doesn't give a true picture of them nowadays. But if it is good
        theatre,
        > that is what is important.
      • jerry_weinstein
        Thanks for your reply, Diane! (and hi to everyone else) I appreciate the facts, as you experienced them. Outcry in the sense of Sequana s motive - to patent an
        Message 3 of 5 , Feb 10, 2002
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          Thanks for your reply, Diane! (and hi to everyone else)

          I appreciate the facts, as you experienced them.

          Outcry in the sense of Sequana's motive - to patent an anti-asthma gene
          and to not duly compensate the inhabitants of TdC, who would have
          provided the genetic material that would make such research possible.

          There are most biotech companies who are "gene prospecting" indigenous
          cultures the world over, not merely hoping for a cure of this or that,
          but vast profits. Many of us here in the U.S. are ashamed of both are
          country's position that life can be patented, and that companies, not
          villages, will profit in the process.

          What do you think about this?

          Cheers,

          Jerry

          --- In tristan-da-cunha@y..., Diane Mew <mewedit@s...> wrote:
          > Dear Jerry,
          > I'm glad you liked the play, though many of the Tristan islanders
          > in Britain didn't seem too keen on it - it is very fictionalized, and
          > doesn't give a true picture of them nowadays. But if it is good theatre,
          > that is what is important.
          > Now on the asthma. Dr. Noe Zamel, of Mt. Sinai Hospital here in
          > Toronto has been to Tristan twice. In 1993 he took some blood samples.
          > He then teamed up with Sequana Therapeutics, and went back to Tristan in
          > 1996, with Carrie le Duc, this time to collect samples from all the
          > islanders for further research. On both occasions he had the permission
          > of the island Council - without which he would not have been able even
          > to land!
          > But why would there be any outcry? and from whom? The islanders
          > received Noe and Carrie with their usual courtesy and kindness. They
          > were pleased to make even a small contribution to the research that
          > might eventually help thousands of sufferers. When the team left, they
          > were given a big party. And when I was on the island in 2000 the
          > islanders still had kind memories of Dr. Zamel. In fact, although the
          > islanders did not ask for money, they did get new equipment for their
          > little hospital, including, I think, an ultrasound machine. The hospital
          > was badly damaged in the May 2000 hurricane, so I don't know whether it
          > is still there.
          > Good luck with your research. Tristan, like Shackleton, seems to be
          > very popular these days. But it is a fascinating place. Yours, Diane
          > Mew, Toronto.
        • Alan S. Drake
          deCode of Iceland (where they have a 1,000 years of good genealogy and a population base of over 250,000) has traced portions of the population with a genetic
          Message 4 of 5 , Feb 11, 2002
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            deCode of Iceland (where they have a 1,000 years of
            good genealogy and a population base of over 250,000)
            has traced portions of the population with a genetic
            trait (first step to locating the gene). The latest
            is a propensity to live to the late 90s or 100+.

            They have done so after national debate and with some
            people opting not be involved for reasons of privacy.
            However, the dead are seen as having no rights to
            privacy.

            I find your anticapitalist viewpoint a bit repugnant.
            A nice clean government paid effort was going to map
            the human genome; spending billions or taxpayer
            dollars and decades of effort. Left alone, the
            "clean" gov't effort would just now be within sight of
            their goal.

            Then an individual with a better idea (which was
            rejected by the genome establishment that was
            benefiting from the LONG effort), raised private money
            and implemented a faster, and in some ways, better and
            certainly cheaper ($0 tax money) effort that also
            motivated the gov't establishment to "get the lead
            out".

            The result, the benefits of the human genome for
            further research are available a half decade sooner;
            and quite possibly more coherent.

            The NIH is QUITE capable of behavior (from personal
            knowledge) that is more shameful than even, say,
            Enron, would be capable of.

            The profit motive is a purer motive, with more social
            benefits, than what motivates many (most ?) gov't
            bureaucrats !

            And patents do expire; while decades long delays do
            not.

            Alan Drake

            P.S. My supervising professor invented CAPD, an
            alternative to hemodialysis for renal (kidney)
            failure.
            NIH threatened to destroy him (in a bathroom
            conversation) unless he assigned the patent to them so
            that NIH could claim the benefits ($1 billion/year
            savings for US gov't, saving ~400 children/year who
            would have otherwise been allowed to die, etc.) in
            order to impress Congress. He refused.

            The US Attorney sued him for 3.5 years, cost him
            $250,000 in legal fees and severely restricted his
            research (and lead to his early retirement). 3 weeks
            before trial the US offered a deal. He would assign
            his patents to NIH and then license them back for $1.
            By this time, he accepted.

            There was a significant loss in research during those
            3.5 years and the lost years from his early
            retirement.
            And he was pinished for doing something that was
            univerally agreed to be a "good thing".

            So much worse, so much more immoral than any profit
            making deal !

            --- jerry_weinstein <jerry.weinstein@...>
            wrote:
            > Thanks for your reply, Diane! (and hi to everyone
            > else)
            >
            > I appreciate the facts, as you experienced them.
            >
            > Outcry in the sense of Sequana's motive - to patent
            > an anti-asthma gene
            > and to not duly compensate the inhabitants of TdC,
            > who would have
            > provided the genetic material that would make such
            > research possible.
            >
            > There are most biotech companies who are "gene
            > prospecting" indigenous
            > cultures the world over, not merely hoping for a
            > cure of this or that,
            > but vast profits. Many of us here in the U.S. are
            > ashamed of both are
            > country's position that life can be patented, and
            > that companies, not
            > villages, will profit in the process.
            >
            > What do you think about this?
            >
            > Cheers,
            >
            > Jerry


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          • jerry_weinstein
            The Guardian An American company has applied to patent one of the bacteria that causes meningitis. It could lead to royalties being paid on every treatment if
            Message 5 of 5 , Feb 11, 2002
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              The Guardian

              An American company has applied to patent one of the bacteria that
              causes meningitis. It could lead to royalties being paid on every
              treatment if a new vaccine against the illness is found.

              The application is one of three filed with the European Patent
              Office
              by Human Genome Sciences (HGS), who are seeking to be the first to
              own
              the whole genetic sequence of bacteria. If the application is
              granted,
              as seems likely, it will open the door for commercial companies to
              patent any lifeform from which they think they can make money -
              including human gene sequences.

              The prospect has appalled scientists in the field, who believe
              discoveries should be shared for the common good and that the
              scramble
              for patents for commercial gain will damage research.

              There were 2,660 cases in England and Wales last year of the most
              dangerous meningococcal form of meningitis, of which 243 were fatal.
              Many of the victims of the largest outbreak for 50 years were young
              children. The illness strikes quickly and is difficult to diagnose.

              Julia Warren of the Meningitis Research Foundation said: "The idea
              that someone should try to patent bacteria and then claim a royalty
              on
              our research if we find a vaccine had never occurred to me. I am
              stunned. It could make treating children prohibitively expensive.
              All
              our money goes on research: we cannot afford royalties as well. Will
              these companies accept responsibility if people die because we could
              not afford to vaccinate them?"

              The Wellcome Trust, which encourages the sharing of gene research,
              also fears the consequences. Celia Caulcott said: "There is evidence
              that commercial companies are doing research and then not publishing
              it while they look for ways to exploit the knowledge they have
              gained.
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