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Marilyn Churley's Adoption Bill

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  • Marilyn Churley's Adoption Bill

    Robin Harritt <ningué[email protected]ão.hoje.agradecimentos> wrote


    .. I doubt from what I have seen
    here that you posses the required gumption to get together a family history of the kind that would help a genetic counsillor. But your son / daughter might one day be able to, given the chance.
    Actually, though, what kind of family history would help a genetic
    counsellor?

    It seems to me that we talk about "medical history" over here as
    though it exists in some kind of complete and accessible form keyed to
    a person's birth-parents' names...

    But even if one did have those names, what family medical history
    would it give you? Would doctors hand over medical files for one's
    b-father, b-mother, and b-sibs, ones' b-aunts and b-uncles? How much
    would one really find out?

    I mentioned, on another thread I think, that my own medical history
    exists mainly in my memory, and unless they think to ask, my kids
    won't know it. Still less would they know the medical history of my
    parents or aunts or uncles. I can't even recall the names of all my
    aunts and uncles, much less what their various ailments and genetic
    proclivities were.

    I can see genetic counselling being important if one has a salient
    genetic disease -- thalassemia or hemophilia or something like that.

    The key points would probably be what most people were aware of and
    recall: what someone died of, whether they were disabled by a disease
    (and even then, they might not be entirely clear what disease Uncle
    Joe or Aunt Betty had or their infant whose name I don't recall now
    died of). Getting detailed medical histories, to my mind, is not easy
    for anyone.

    Rupa

  • #2
    Marilyn Churley's Adoption Bill

    >Subject: Re: Marilyn Churley's Adoption Bill
    From: [email protected] (Rupa Bose)Date: 11/28/2004
    Actually, though, what kind of family history would help a geneticcounsellor?It seems to me that we talk about "medical history" over here asthough it exists in some kind of complete and accessible form keyed toa person's birth-parents' names...But even if one did have those names, what family medical historywould it give you?
    I have found death certificates to be very informative. Also old city
    directories which list occupation (end of job possible retirement due to poor
    health), and old newspapers, especially small town. Kathy
    I can see genetic counselling being important if one has a salientgenetic disease -- thalassemia or hemophilia or something like that.
    Many more:
    http://www.med.nyu.edu/rgdc/disease.htm

    The key points would probably be what most people were aware of andrecall: what someone died of, whether they were disabled by a disease(and even then, they might not be entirely clear what disease UncleJoe or Aunt Betty had or their infant whose name I don't recall nowdied of). Getting detailed medical histories, to my mind, is not easyfor anyone.Rupa
    Many do not realize the importance until they are hit. Kathy J

    Comment


    • #3
      Marilyn Churley's Adoption Bill

      >
      Robin Harritt <ningué[email protected]ão.hoje.agradecimentos> wrote. I doubt from what I have seen
      here that you posses the required gumption to get together a family history of the kind that would help a genetic counsillor. But your son / daughter might one day be able to, given the chance.
      Actually, though, what kind of family history would help a geneticcounsellor?It seems to me that we talk about "medical history" over here asthough it exists in some kind of complete and accessible form keyed toa person's birth-parents' names...But even if one did have those names, what family medical historywould it give you? Would doctors hand over medical files for one'sb-father, b-mother, and b-sibs, ones' b-aunts and b-uncles? How muchwould one really find out?I mentioned, on another thread I think, that my own medical historyexists mainly in my memory, and unless they think to ask, my kidswon't know it. Still less would they know the medical history of myparents or aunts or uncles. I can't even recall the names of all myaunts and uncles, much less what their various ailments and geneticproclivities were.I can see genetic counselling being important if one has a salientgenetic disease -- thalassemia or hemophilia or something like that.The key points would probably be what most people were aware of andrecall: what someone died of, whether they were disabled by a disease(and even then, they might not be entirely clear what disease UncleJoe or Aunt Betty had or their infant whose name I don't recall nowdied of). Getting detailed medical histories, to my mind, is not easyfor anyone.Rupa
      Some months ago, I attended a retreat at which I was asked to complete an
      exercise in which I had to estimate how long I had to live. I started with the
      ages at death of my garndparents, my father and his two brothers, and my
      mother's two brothers. The five males in the generation before me died at an
      average age of less than 70. Since I'm 53, it was a sobering thought and one
      that re-awakened some dreams I intend to fulfill before I'm dirt.

      More recently, I was contacted by a distant cousin who was just beginning to
      examine the family tree. I pulled out my files and came across copies of the
      death certificates and articles I've collected over the years. These, together
      with my knowledge of the causes of death of the generation before me and the
      medical conditions of my mother and my aging siblings give me additional pause
      and reason to put some things in order.

      I'm probably out of the ordinary in the degree of information I have and I
      doubt most people would go to the trouble to collect it. But there's no reason
      why they shouldn't have the ability to do so if they choose. Much is there in
      the public record, if you choose to go look for it. All you need are the
      names.

      J.



      Reply to jmhjmd at aol.


      Comment


      • #4
        Marilyn Churley's Adoption Bill

        Rupa Bose wrote:
        Robin Harritt <ningué[email protected]ão.hoje.agradecimentos> wrote . I doubt from what I have seen
        here that you posses the required gumption to get together a family history of the kind that would help a genetic counsillor. But your son / daughter might one day be able to, given the chance.
        Actually, though, what kind of family history would help a geneticcounsellor?It seems to me that we talk about "medical history" over here asthough it exists in some kind of complete and accessible form keyed toa person's birth-parents' names...But even if one did have those names, what family medical historywould it give you? Would doctors hand over medical files for one'sb-father, b-mother, and b-sibs, ones' b-aunts and b-uncles? How muchwould one really find out?I mentioned, on another thread I think, that my own medical historyexists mainly in my memory, and unless they think to ask, my kidswon't know it. Still less would they know the medical history of myparents or aunts or uncles. I can't even recall the names of all myaunts and uncles, much less what their various ailments and geneticproclivities were.I can see genetic counselling being important if one has a salientgenetic disease -- thalassemia or hemophilia or something like that.The key points would probably be what most people were aware of andrecall: what someone died of, whether they were disabled by a disease(and even then, they might not be entirely clear what disease UncleJoe or Aunt Betty had or their infant whose name I don't recall nowdied of). Getting detailed medical histories, to my mind, is not easyfor anyone.Rupa

        Do you not have death certificates with the cause of death on them?
        When I registered my adad's death seven years ago the cause of death
        form had a history of his heart condition (the final cause of death) and
        other heath factors that contributed to it back to the 1950s, such as
        hypertension. That appears in a very brief form on the death
        certificate. Death certificates were first issued in England in 1837.
        Elsewhere in this thread I have given an example of how medical history
        is important from my own experience. I told my GP of the history of
        heart disease that I had found and was given an almost immediate
        appointment for a hospital check, that's a bit unusual in the National
        Health Service's system here in Britain. I wasn't able to find death
        certificates for everyone in my birth family, so family anecdote has
        also been very important as was talking to the living brothers and
        sisters on my mother's side, both for me and for them.


        Robin





        Comment


        • #5
          Marilyn Churley's Adoption Bill

          >
          Do you not have death certificates with the cause of death on them? When I registered my adad's death seven years ago the cause of death form had a history of his heart condition (the final cause of death) and other heath factors that contributed to it back to the 1950s, such as hypertension. That appears in a very brief form on the death certificate. Death certificates were first issued in England in 1837. Elsewhere in this thread I have given an example of how medical history is important from my own experience. I told my GP of the history of heart disease that I had found and was given an almost immediate appointment for a hospital check, that's a bit unusual in the National Health Service's system here in Britain. I wasn't able to find death certificates for everyone in my birth family, so family anecdote has also been very important as was talking to the living brothers and sisters on my mother's side, both for me and for them. Robin
          Ah. No one in my family died in the US, so the certs I have are from
          India. They state a brief cause of death, and don't have any history.
          Actually, the formal certficate I don't think even lists cause of
          death, but to issue that they need a doctor's cert that does, and I
          have some of those. I didn't realize that other countries have
          detailed certs with all the medical history.

          Rupa

          Comment


          • #6
            Marilyn Churley's Adoption Bill

            [email protected]ostible (J.) wrote
            Some months ago, I attended a retreat at which I was asked to complete an exercise in which I had to estimate how long I had to live. I started with the ages at death of my garndparents, my father and his two brothers, and my mother's two brothers. The five males in the generation before me died at an average age of less than 70. Since I'm 53, it was a sobering thought and one that re-awakened some dreams I intend to fulfill before I'm dirt.
            I think it's a great idea to go for the dreams.
            But I haven't found this method worked real well in my family. By that
            reckoning, there were members of my family who died about a decade too
            early. And others who lived a decade too long...


            Much is there in
            the public record, if you choose to go look for it. All you need are the names.
            I hadn't realized that.
            Do most non-adoptees on this ng have that kind of depth in their
            medical histories? I know by hearsay what my direct forebears for 2
            generations died of, and that's pretty much it.

            Rupa

            Comment


            • #7
              Marilyn Churley's Adoption Bill

              Rupa Bose wrote:
              Do you not have death certificates with the cause of death on them?When I registered my adad's death seven years ago the cause of deathform had a history of his heart condition (the final cause of death) andother heath factors that contributed to it back to the 1950s, such ashypertension. That appears in a very brief form on the deathcertificate. Death certificates were first issued in England in 1837.Elsewhere in this thread I have given an example of how medical historyis important from my own experience. I told my GP of the history ofheart disease that I had found and was given an almost immediateappointment for a hospital check, that's a bit unusual in the NationalHealth Service's system here in Britain. I wasn't able to find deathcertificates for everyone in my birth family, so family anecdote hasalso been very important as was talking to the living brothers andsisters on my mother's side, both for me and for them.RobinAh. No one in my family died in the US, so the certs I have are fromIndia. They state a brief cause of death, and don't have any history.Actually, the formal certficate I don't think even lists cause ofdeath, but to issue that they need a doctor's cert that does, and Ihave some of those. I didn't realize that other countries havedetailed certs with all the medical history.Rupa


              Certificates themselves don't give a detailed history, the doctors
              report that I had to give to the Registrar and which she read back to me
              was quite detailed. I don't how or if anyone would be allowed access to
              that report or how long it is kept.

              My a-mom's death certificate from 1960 which I happen to have handy
              because I need to get access to some of my adoption records, says under
              Cause of Death:

              1a Malignant cachexia
              b Carcinoma of both breasts
              c With dissemination

              That is quite enough to make it clear that she died of breast cancer.
              Important for any other woman in her family adopted out or not to know
              that. And to know if any other member of the family died of breast
              cancer. Woman who have two or more other woman in their family who have
              had breast cancer are at a considerably higher statistical risk of
              having the disease than the population in general. Some women in that
              position do chose to have preventative mastectomy, they would certainly
              want to have more frequent scans.

              Breast cancer is one example of a situation where it is vitaly important
              to know family medical history. Long QT syndrome would be another, there
              are many many more.


              Robin


              Comment

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