RE: [ozmidwifery] Interesting article sure to cause some ethical debate
How sad. If you asked a person with cystic fibrosis whether their life had been worth living, even if it is shortened, I wonder what they would say? Nicole. -Original Message-From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED]On Behalf Of Helen and GrahamSent: Thursday, December 01, 2005 6:32 PMTo: ozmidwiferySubject: [ozmidwifery] Interesting article sure to cause some ethical debate http://www.abc.net.au/health/thepulse/s1520191.htm Screening for cystic fibrosis carriers by Peter LavellePublished 01/12/2005 Every year 70 babies are born in Australia with cystic fibrosis. The child suffers serious lung and digestive problems - they don't manufacture a vital protein, which causes secretions to become very sticky and their lungs and pancreas to literally 'gum up'. The lungs become susceptible to infection and digestion doesn't work propery. Treatment is much more effective than it was 20years ago. Most children with cystic fibrosis now can expect to survive into adulthood. But the average life expectancy is still only in the mid thirties. Cystic fibrosis is an inherited condition, but a child has to have an abnormal gene from both parents to get it. When both parents are 'carriers' of the abnormal gene, there is a one in four chance of this happening. About one person in 25 in Australia is a carrier. About one in 2,500 kids will be born with the condition. At the moment, carriers aren't identified by testing. Instead, newborn babies are routinely screened for the condition (that's how most new cases are diagnosed). Only then do most parents become aware they are carriers. Parents are then routinely offered prenatal testing of a foetus in any subsequent pregnancy and they have the option of then terminating that pregnancy. But it's too late to do anything about the first child. There is a test to identify carriers of a cystic fibrosis gene. It's fairly reliable (with an 85 per cent accuracy rate), and it involves a painless cheek swab. But it's generally not offered to Australian couples unless there's a family history of the condition. The trouble is, most carriers don't know they are carriers, and have no history of the condition. The faulty gene has been hidden away in their ancestry, not expressed. A group of doctors from the Royal Children's Hospital, Melbourne, writing in the latest edition of the Medical Journal of Australia, say testing for carriers should be more widely available. The doctors propose that the genetic test be offered as a prenatal test early in pregnancy. The couple would both be tested, and if they were both carriers, the foetus would be tested (via chorionic villus sampling, in which a portion of the placenta is sampled). If the foetus had both mutations (a one in four chance), the parents could then be given the option of terminating the pregnancy. Ideally, the researchers say, carrier screening should be offered to partners before they conceive. Couples could be tested for carrier status, and if both partners were carriers, they could consider whether they want to conceive in the first place. If they did, they would have the option of conceiving and terminating the pregnancy if the foetus had both mutations. Or they could opt for in-vitro fertilisation - with the embryo conceived and tested in the lab, and only implanted in the woman's uterus if it was found not to have both mutations. There is a successful carrier screening program for cystic fibrosis that's been operating along these lines in Edinburgh, Scotland, which has halved the incidence of cystic fibrosis in that community, the researchers say. At the very least, they argue, it should be offered as part of routine prenatal testing, like screening for Down's syndrome. The doctors say it should be funded by Medicare, on the grounds of cost-effectiveness (saving the resources otherwise spent treating a child with the condition) and prevention of future suffering for kids and their families.
Re: [ozmidwifery] Interesting article sure to cause some ethical debate
i would also have to agree with that last statement as my sons girlfriend has this disease. he knows that she may not be alive when she is older and they need to enjoy each other now. - Original Message - From: Nicole Carver To: ozmidwifery@acegraphics.com.au Sent: Thursday, December 01, 2005 11:31 PM Subject: RE: [ozmidwifery] Interesting article sure to cause some ethical debate How sad. If you asked a person with cystic fibrosis whether their life had been worth living, even if it is shortened, I wonder what they would say? Nicole. -Original Message-From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED]On Behalf Of Helen and GrahamSent: Thursday, December 01, 2005 6:32 PMTo: ozmidwiferySubject: [ozmidwifery] Interesting article sure to cause some ethical debate http://www.abc.net.au/health/thepulse/s1520191.htm Screening for cystic fibrosis carriers by Peter LavellePublished 01/12/2005 Every year 70 babies are born in Australia with cystic fibrosis. The child suffers serious lung and digestive problems - they don't manufacture a vital protein, which causes secretions to become very sticky and their lungs and pancreas to literally 'gum up'. The lungs become susceptible to infection and digestion doesn't work propery. Treatment is much more effective than it was 20years ago. Most children with cystic fibrosis now can expect to survive into adulthood. But the average life expectancy is still only in the mid thirties. Cystic fibrosis is an inherited condition, but a child has to have an abnormal gene from both parents to get it. When both parents are 'carriers' of the abnormal gene, there is a one in four chance of this happening. About one person in 25 in Australia is a carrier. About one in 2,500 kids will be born with the condition. At the moment, carriers aren't identified by testing. Instead, newborn babies are routinely screened for the condition (that's how most new cases are diagnosed). Only then do most parents become aware they are carriers. Parents are then routinely offered prenatal testing of a foetus in any subsequent pregnancy and they have the option of then terminating that pregnancy. But it's too late to do anything about the first child. There is a test to identify carriers of a cystic fibrosis gene. It's fairly reliable (with an 85 per cent accuracy rate), and it involves a painless cheek swab. But it's generally not offered to Australian couples unless there's a family history of the condition. The trouble is, most carriers don't know they are carriers, and have no history of the condition. The faulty gene has been hidden away in their ancestry, not expressed. A group of doctors from the Royal Children's Hospital, Melbourne, writing in the latest edition of the Medical Journal of Australia, say testing for carriers should be more widely available. The doctors propose that the genetic test be offered as a prenatal test early in pregnancy. The couple would both be tested, and if they were both carriers, the foetus would be tested (via chorionic villus sampling, in which a portion of the placenta is sampled). If the foetus had both mutations (a one in four chance), the parents could then be given the option of terminating the pregnancy. Ideally, the researchers say, carrier screening should be offered to partners before they conceive. Couples could be tested for carrier status, and if both partners were carriers, they could consider whether they want to conceive in the first place. If they did, they would have the option of conceiving and terminating the pregnancy if the foetus had both mutations. Or they could opt for in-vitro fertilisation - with the embryo conceived and tested in the lab, and only implanted in the woman's uterus if it was found not to have both mutations. There is a successful carrier screening program for cystic fibrosis that's been operating along these lines in Edinburgh, Scotland, which has halved the incidence of cystic fibrosis in that community, the researchers say. At the very least, they argue, it should be offered as part of routine prenatal testing, like screening for Down's syndrome. The doctors say it should be funded by Medicare, on the grounds of cost-effectiveness (saving the resources otherwise spent treating a child with the condition) and prevention of future suffering for kids and their families.
RE: [ozmidwifery] Interesting article sure to cause some ethical debate
I wonder what all those people with Down Syndrome and other problems would say -Original Message-From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED]On Behalf Of sharonSent: Friday, 2 December 2005 7:59 AMTo: ozmidwifery@acegraphics.com.auSubject: Re: [ozmidwifery] Interesting article sure to cause some ethical debate i would also have to agree with that last statement as my sons girlfriend has this disease. he knows that she may not be alive when she is older and they need to enjoy each other now. - Original Message - From: Nicole Carver To: ozmidwifery@acegraphics.com.au Sent: Thursday, December 01, 2005 11:31 PM Subject: RE: [ozmidwifery] Interesting article sure to cause some ethical debate How sad. If you asked a person with cystic fibrosis whether their life had been worth living, even if it is shortened, I wonder what they would say? Nicole. -Original Message-From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED]On Behalf Of Helen and GrahamSent: Thursday, December 01, 2005 6:32 PMTo: ozmidwiferySubject: [ozmidwifery] Interesting article sure to cause some ethical debate http://www.abc.net.au/health/thepulse/s1520191.htm Screening for cystic fibrosis carriers by Peter LavellePublished 01/12/2005 Every year 70 babies are born in Australia with cystic fibrosis. The child suffers serious lung and digestive problems - they don't manufacture a vital protein, which causes secretions to become very sticky and their lungs and pancreas to literally 'gum up'. The lungs become susceptible to infection and digestion doesn't work propery. Treatment is much more effective than it was 20years ago. Most children with cystic fibrosis now can expect to survive into adulthood. But the average life expectancy is still only in the mid thirties. Cystic fibrosis is an inherited condition, but a child has to have an abnormal gene from both parents to get it. When both parents are 'carriers' of the abnormal gene, there is a one in four chance of this happening. About one person in 25 in Australia is a carrier. About one in 2,500 kids will be born with the condition. At the moment, carriers aren't identified by testing. Instead, newborn babies are routinely screened for the condition (that's how most new cases are diagnosed). Only then do most parents become aware they are carriers. Parents are then routinely offered prenatal testing of a foetus in any subsequent pregnancy and they have the option of then terminating that pregnancy. But it's too late to do anything about the first child. There is a test to identify carriers of a cystic fibrosis gene. It's fairly reliable (with an 85 per cent accuracy rate), and it involves a painless cheek swab. But it's generally not offered to Australian couples unless there's a family history of the condition. The trouble is, most carriers don't know they are carriers, and have no history of the condition. The faulty gene has been hidden away in their ancestry, not expressed. A group of doctors from the Royal Children's Hospital, Melbourne, writing in the latest edition of the Medical Journal of Australia, say testing for carriers should be more widely available. The doctors propose that the genetic test be offered as a prenatal test early in pregnancy. The couple would both be tested, and if they were both carriers, the foetus would be tested (via chorionic villus sampling, in which a portion of the placenta is sampled). If the foetus had both mutations (a one in four chance), the parents could then be given the option of terminating the pregnancy. Ideally, the researchers say, carrier screening should be offered to partners before they conceive. Couples could be tested for carrier status, and if both partners were carriers, they could consider whether they want to conceive in the first place. If they did, they would have the option of conceiving and terminating the pregnancy if the foetus had both mutations. Or they could opt for in-vitro fertilisation - with the embryo conceived and tested in the lab, and only implanted in the woman's uterus if it was found not to have both mutations. There is a successful carrier screening program for cystic fibrosis that's been operating along these lines in Edinburgh, Scotland, which has halved the incidence of cystic fibrosis in that community, the researchers say. At the very least, they argue, it should be offered as part of routine prenatal testing, like screening for Down's syndrome. The doctors say
[ozmidwifery] Interesting article sure to cause some ethical debate
http://www.abc.net.au/health/thepulse/s1520191.htm Screening for cystic fibrosis carriers by Peter LavellePublished 01/12/2005 Every year 70 babies are born in Australia with cystic fibrosis. The child suffers serious lung and digestive problems - they don't manufacture a vital protein, which causes secretions to become very sticky and their lungs and pancreas to literally 'gum up'. The lungs become susceptible to infection and digestion doesn't work propery. Treatment is much more effective than it was 20years ago. Most children with cystic fibrosis now can expect to survive into adulthood. But the average life expectancy is still only in the mid thirties. Cystic fibrosis is an inherited condition, but a child has to have an abnormal gene from both parents to get it. When both parents are 'carriers' of the abnormal gene, there is a one in four chance of this happening. About one person in 25 in Australia is a carrier. About one in 2,500 kids will be born with the condition. At the moment, carriers aren't identified by testing. Instead, newborn babies are routinely screened for the condition (that's how most new cases are diagnosed). Only then do most parents become aware they are carriers. Parents are then routinely offered prenatal testing of a foetus in any subsequent pregnancy and they have the option of then terminating that pregnancy. But it's too late to do anything about the first child. There is a test to identify carriers of a cystic fibrosis gene. It's fairly reliable (with an 85 per cent accuracy rate), and it involves a painless cheek swab. But it's generally not offered to Australian couples unless there's a family history of the condition. The trouble is, most carriers don't know they are carriers, and have no history of the condition. The faulty gene has been hidden away in their ancestry, not expressed. A group of doctors from the Royal Children's Hospital, Melbourne, writing in the latest edition of the Medical Journal of Australia, say testing for carriers should be more widely available. The doctors propose that the genetic test be offered as a prenatal test early in pregnancy. The couple would both be tested, and if they were both carriers, the foetus would be tested (via chorionic villus sampling, in which a portion of the placenta is sampled). If the foetus had both mutations (a one in four chance), the parents could then be given the option of terminating the pregnancy. Ideally, the researchers say, carrier screening should be offered to partners before they conceive. Couples could be tested for carrier status, and if both partners were carriers, they could consider whether they want to conceive in the first place. If they did, they would have the option of conceiving and terminating the pregnancy if the foetus had both mutations. Or they could opt for in-vitro fertilisation - with the embryo conceived and tested in the lab, and only implanted in the woman's uterus if it was found not to have both mutations. There is a successful carrier screening program for cystic fibrosis that's been operating along these lines in Edinburgh, Scotland, which has halved the incidence of cystic fibrosis in that community, the researchers say. At the very least, they argue, it should be offered as part of routine prenatal testing, like screening for Down's syndrome. The doctors say it should be funded by Medicare, on the grounds of cost-effectiveness (saving the resources otherwise spent treating a child with the condition) and prevention of future suffering for kids and their families.
