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Prenatal Diagnosis and Genetic Testing
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Prenatal Diagnosis and Genetic Testing
Prenatal Diagnosis and Genetic
Testing
Participants:
Alexandra Minna Stern (UMich), Elizabeth Petty (UMich), Azumi Tsuge
(Meijigakuin University), Daphna Carmeli (Haifa Univesity), Eva
Sommerseth (Norway), Yael Hashiloni-Dolev (Hebrew University), Noga
Weiner (Ben Gurion University), Sara Cooley (UMich)
Concepts for discussion
What for us all has come out of this
conference: prenatal diagnosis/testing in the context of "Reproductive
Disruptions?" How can we take a comparative perspective?
The story of routinization of testing.
In the US, is this just a further process of medicalization? How
is this story unfolding in other contexts? How are national health
systems involved? How other types of adult disease tests produce
further 'reproductive disruptions' over a life cycle, in terms of
family histories, etc?
What are the similarities that we have
noticed in various countries over the course of this conference?
Differences? Where do we see prenatal diagnosis going in the future?
What are the barriers? Where do we want it to go? Who is
making those choices?
There is an assumption that
the more technology you have the better your outcomes but in Norway,
the US, Israel, and Japan this is not necessarily so. Anxiety,
guilt, risk accompany these. As does political rhetoric and moral
decision making.
In Japan, doctors and women
are making different types of choices. The disabled persons'
movement is narrowing the types of decisions that can be made.
Also, women may avoid genetic testing to avoid making the choices that
ensue from it (abortion).
Implications for future
Maybe it might be useful to
distinguish between two types of genetics abnormalities.
Genetic mutation/flaw (ie. Down's) but also inherited disorders.
Two different epistemological "creatures."
.Some of the talks here were
activist. On the whole there are a lot of benefits to being able
to detect such abnormalities, yet the excess stress this puts onto the
mothers is extraordinary. Genetic counselors don't seem to be
alleviated this. There must be something that can be done to improve
this process, how it's done. Shift in practice of genetic counseling
could be useful to think about, to do something with our work, outside
of theory.
That choice in the US medical
system doesn't translate to other cultural communities, like NYC hospital.
Sees this as an issue in the coming years, how can services be delivered
to other populations in the system? Will those patients want a
say in the ethics of care and how it's delivered?
Conference
feedback
She would really like to see a listserv
come out of this conference so that we can communicate and publish if
there are other conferences. For the entire RD group
Transcript
Azumi: Women's experience with pregnancy
and prenatal testing. In Japan women feel uncomfortable about
being asked. Japan had disabled people's movement against amniocentesis.
Some local governments encourage testing, but it's very expensive.
Government pays for testing if woman has history. Now medical
doctors present testing as a choice to women. This is a contentious
issue because doctors may be accused of discrimination by the disabled
movement. According to Azumi's survey, many woman do not want
to have amniocentesis because of the difficult decision that could ensue
from the results. Want to avoid abortion. Without test,
they don't have to make a decision about abortion. Need
to understand not only the contexts and comparisons but also the background
and particular histories.
Daphna: Maybe it might be useful
to distinguish between two types of genetics abnormalities.
Genetic mutation/flaw (ie. Down's) but also inherited disorders.
Two different epistemological "creatures."
Eva: In Norway, Down's Syndrome is
one of the easiest to decide to terminate. Spina bofida, heart
diseases maybe. Every year we terminate easier and easier.
Further testings and screenings allow us "to see everything."
Even sex.
Azumi: People CHOOSE. Make a decision
to have or not have testing with amniocentesis, CVS, etc. But
ultrasound is routine. Some enjoy this 'seeing' but when doctors
find further malformations through other tests, women may choose to
terminate. No decision regarding having ultrasound is made.
In Japan, some couples have ultrasound more than ten times per pregnancy.
Utilization of this technology is not seen as an issue.
Alexandra: This allows us a window into
what can be seen and how that is used according to circumstance.
What IS seen, how translated? IN US ultrasound images used to
fuel pro-life rhetoric.
Elizabeth: In US, ultrasound is available
as consumer service, in strip malls, etc. Many patients are going
to these malls and getting images. May have normal u-sounds, see
baby as "normal' and may find out it's not so with other types
of tests.
Yael: "Moral pioneers" that
women are, especially regarding these issues. Yet here not many
talks dealt with this issue. Some of the talks here were activist.
On the whole there are a lot of benefits to being able to detect such
abnormalities, yet the excess stress this puts onto the mothers is extraordinary.
Genetic counselors don't seem to be alleviated this. There must
be something that can be done to improve this process, how it's done.
Shift in practice of genetic counseling could be useful to think about,
to do something with our work, outside of theory.
Eva: What do women lose with all this
technology? Can't be against it because can't stop it.
It's come too far.
Yael: Naturalization of birth.
There is overmedicalization. But women also lose as they feel
like failures too if they can't have a "natural" delivery.
Is it possible to take the benefits without terrible burden?
Eva: In Norway, try to combine "natural"
birth with technology. Women are constantly receiving feedback
throughout pregnancy like "maybe something is wrong." NEVER feel
normal, anxiety-free, natural. How to say NO to some?
Yael: If we say no, are burying
head in the sand.
Daphna: Worrying in pregnancy,
worrying through life. This worry is part of being natural, is
way of life: as adults we worry about environment, food. The outlook
that we need to know more is much more pervasive. Pregnancy just
one more place.
Elizabeth: Now women have access
to information on internet too.
Daphna: So much information, we ignore
some.
Yael: Pregnancy is a vulnerable
state.
Alexandra: Pregnancy is state of risk.
What is the management of this risk? Coping strategies?
With increasing privatization, all this responsibility falls on the
individual woman. If have money, may have further options.
But if not, what are you going to do with a child with special needs?
In the country, it's a schizophrenia, seeking out PGD, etc, but also
avoidance, fear. The horror and the fascination. Need to
do cross-cultural comparisons for actual recipients.
Noga: The planned pregnancy is a modern
phenomenon. As professional women delay becoming pregnancy.
Then have window in which HAVE to succeed in having a baby. You
have less pregnancies and gamble with these, with time. .. Need
to distinguish between different groups of women, even within countries.
In southern Israel, with the Bedouins they have genetic diseases and
malformations. Patronizing conditions accompany genetic testing.
The whole issue of wanting to help a community but also right to interfere
with culture and life?
Azumi: Her impression in the US through
one year on sabbatical, choice is very important. But we make
choice after we receive information. Which is very limited.
But we have no time to read this information that is written down by
doctors, others. Choices make women worry. Japanese women
have trouble negotiating choice in US medical system; in Japan, a doctor
recommends.
Alexandra: That choice in the US
medical system doesn't translate to other cultural communities, like
NYC hospital. Sees this as an issue in the coming years, how can
services be delivered to other populations in the system? Will
those patients want a say in the ethics of care and how it's delivered?
Noga: Services in Israel also stratified.
There is national health insurance but have limited options. Many
things you have to pay or seek out supplementary insurance.
The Internet and books allow immigrants, Bedouins, Arabs, to access
information. Perhaps not care.
Yael: There is a group of women
that choose prenatal diagnosis. Well educated, Ashkenazi, middle
class, not religious.
Azumi: Japan has national health insurance:
state pays 70% and individual 30%... Because doctors tell patients
what to do, they have more responsibility, have to be perfect.
Eva: New law last year regarding patient
rights. Patient has to choose what s/he wants in treatment.
Nurse and doctors inform. The principle of informed consent.
But patients don't really know what to do. They ask what to
do, and do that.
Yael: Comes from genetic testing,
patients ask what to do but role is to provide information. [Conference
feedback: She would really like to see a listserv come out of this conference
so that we can communicate and publish if there are other conferences.
For the entire RD group.]
Alexandra: Curious about panel on commercialization.
How does this relate to genetic technologies?
Eva: The main problem, "the technological
imperative." We take one step at a time.. Her question
is "do the women have a real choice" when faced with amniocentesis
results? They have to choose to terminate within a very short
period of time to remain before 25 weeks. Some continue.
But when you put on the choice to terminate, these women feel guilty
for years. Perhaps better not to have to choose.
Alexandra: In this country, the Christian
right believes the fetus/embryo should have the status of personhood
in the law. Very worrisome as women are given more and more information
regarding genetic disorders that may lead to choosing to abort but from
the other direction there is a rhetoric that these are people.
Very difficult for women to manage, anxiety-producing information.
Eva: In Norway, women have the baby at
22-25 weeks when they are some of these disorders but then they die
and . Not abortion nor miscarriage. But delivery of wanted
baby instead of termination. So that those babies are delivered
and then not supported medically.
Alexandra: In the US, wife of military
personnel chose to abort but had to leave military health system because
they wouldn't provide service. Sought reimbursement from outsider
provider, but insurance wouldn't pay. Saw it as homicide rather
than therapeutic abortion.
Azumi: In Japan, abortion allowed according
to women's health but fetal health no. Because of the disabled
persons' movement, abortions for fetal disorders not covered by health
insurance. Movement to create new categories in provision of abortions.
Until 1996, there was a eugenics protection law which allows abortion.
There is a list that includes muscular dystrophy, Hansen's Disease.
A complex history for abortion. Difficult to contract prenatal
testing. Makes women's attitudes, worry about children having disabilities.
They know if they chose to terminate, may be criticized as discrimination.
Hide it.
Elizabeth: Pressure to terminate abnormal
fetuses by medical professions, families. Not really a choice
because questioned about WHY they had THAT child afterwards.
Eva: Case in Norway with twins.
One Down's and woman chose to terminate that one. Woman, providers
questioning, did we terminate the right twin?
Elizabeth: A patient of hers used PGD
trying to avoid cystic fibrosis but end up with child with Down's
syndrome. There is an assumption that the more technology you
have the better your outcomes but not.
Prenatal Diagnosis and Genetic Testing
Prenatal Diagnosis and Genetic
Testing
Participants:
Alexandra Minna Stern (UMich), Elizabeth Petty (UMich), Azumi Tsuge
(Meijigakuin University), Daphna Carmeli (Haifa Univesity), Eva
Sommerseth (Norway), Yael Hashiloni-Dolev (Hebrew University), Noga
Weiner (Ben Gurion University), Sara Cooley (UMich)
Concepts for discussion
What for us all has come out of this
conference: prenatal diagnosis/testing in the context of "Reproductive
Disruptions?" How can we take a comparative perspective?
The story of routinization of testing.
In the US, is this just a further process of medicalization? How
is this story unfolding in other contexts? How are national health
systems involved? How other types of adult disease tests produce
further 'reproductive disruptions' over a life cycle, in terms of
family histories, etc?
What are the similarities that we have
noticed in various countries over the course of this conference?
Differences? Where do we see prenatal diagnosis going in the future?
What are the barriers? Where do we want it to go? Who is
making those choices?
There is an assumption that
the more technology you have the better your outcomes but in Norway,
the US, Israel, and Japan this is not necessarily so. Anxiety,
guilt, risk accompany these. As does political rhetoric and moral
decision making.
In Japan, doctors and women
are making different types of choices. The disabled persons'
movement is narrowing the types of decisions that can be made.
Also, women may avoid genetic testing to avoid making the choices that
ensue from it (abortion).
Implications for future
Maybe it might be useful to
distinguish between two types of genetics abnormalities.
Genetic mutation/flaw (ie. Down's) but also inherited disorders.
Two different epistemological "creatures."
.Some of the talks here were
activist. On the whole there are a lot of benefits to being able
to detect such abnormalities, yet the excess stress this puts onto the
mothers is extraordinary. Genetic counselors don't seem to be
alleviated this. There must be something that can be done to improve
this process, how it's done. Shift in practice of genetic counseling
could be useful to think about, to do something with our work, outside
of theory.
That choice in the US medical
system doesn't translate to other cultural communities, like NYC hospital.
Sees this as an issue in the coming years, how can services be delivered
to other populations in the system? Will those patients want a
say in the ethics of care and how it's delivered?
Conference
feedback
She would really like to see a listserv
come out of this conference so that we can communicate and publish if
there are other conferences. For the entire RD group
Transcript
Azumi: Women's experience with pregnancy
and prenatal testing. In Japan women feel uncomfortable about
being asked. Japan had disabled people's movement against amniocentesis.
Some local governments encourage testing, but it's very expensive.
Government pays for testing if woman has history. Now medical
doctors present testing as a choice to women. This is a contentious
issue because doctors may be accused of discrimination by the disabled
movement. According to Azumi's survey, many woman do not want
to have amniocentesis because of the difficult decision that could ensue
from the results. Want to avoid abortion. Without test,
they don't have to make a decision about abortion. Need
to understand not only the contexts and comparisons but also the background
and particular histories.
Daphna: Maybe it might be useful
to distinguish between two types of genetics abnormalities.
Genetic mutation/flaw (ie. Down's) but also inherited disorders.
Two different epistemological "creatures."
Eva: In Norway, Down's Syndrome is
one of the easiest to decide to terminate. Spina bofida, heart
diseases maybe. Every year we terminate easier and easier.
Further testings and screenings allow us "to see everything."
Even sex.
Azumi: People CHOOSE. Make a decision
to have or not have testing with amniocentesis, CVS, etc. But
ultrasound is routine. Some enjoy this 'seeing' but when doctors
find further malformations through other tests, women may choose to
terminate. No decision regarding having ultrasound is made.
In Japan, some couples have ultrasound more than ten times per pregnancy.
Utilization of this technology is not seen as an issue.
Alexandra: This allows us a window into
what can be seen and how that is used according to circumstance.
What IS seen, how translated? IN US ultrasound images used to
fuel pro-life rhetoric.
Elizabeth: In US, ultrasound is available
as consumer service, in strip malls, etc. Many patients are going
to these malls and getting images. May have normal u-sounds, see
baby as "normal' and may find out it's not so with other types
of tests.
Yael: "Moral pioneers" that
women are, especially regarding these issues. Yet here not many
talks dealt with this issue. Some of the talks here were activist.
On the whole there are a lot of benefits to being able to detect such
abnormalities, yet the excess stress this puts onto the mothers is extraordinary.
Genetic counselors don't seem to be alleviated this. There must
be something that can be done to improve this process, how it's done.
Shift in practice of genetic counseling could be useful to think about,
to do something with our work, outside of theory.
Eva: What do women lose with all this
technology? Can't be against it because can't stop it.
It's come too far.
Yael: Naturalization of birth.
There is overmedicalization. But women also lose as they feel
like failures too if they can't have a "natural" delivery.
Is it possible to take the benefits without terrible burden?
Eva: In Norway, try to combine "natural"
birth with technology. Women are constantly receiving feedback
throughout pregnancy like "maybe something is wrong." NEVER feel
normal, anxiety-free, natural. How to say NO to some?
Yael: If we say no, are burying
head in the sand.
Daphna: Worrying in pregnancy,
worrying through life. This worry is part of being natural, is
way of life: as adults we worry about environment, food. The outlook
that we need to know more is much more pervasive. Pregnancy just
one more place.
Elizabeth: Now women have access
to information on internet too.
Daphna: So much information, we ignore
some.
Yael: Pregnancy is a vulnerable
state.
Alexandra: Pregnancy is state of risk.
What is the management of this risk? Coping strategies?
With increasing privatization, all this responsibility falls on the
individual woman. If have money, may have further options.
But if not, what are you going to do with a child with special needs?
In the country, it's a schizophrenia, seeking out PGD, etc, but also
avoidance, fear. The horror and the fascination. Need to
do cross-cultural comparisons for actual recipients.
Noga: The planned pregnancy is a modern
phenomenon. As professional women delay becoming pregnancy.
Then have window in which HAVE to succeed in having a baby. You
have less pregnancies and gamble with these, with time. .. Need
to distinguish between different groups of women, even within countries.
In southern Israel, with the Bedouins they have genetic diseases and
malformations. Patronizing conditions accompany genetic testing.
The whole issue of wanting to help a community but also right to interfere
with culture and life?
Azumi: Her impression in the US through
one year on sabbatical, choice is very important. But we make
choice after we receive information. Which is very limited.
But we have no time to read this information that is written down by
doctors, others. Choices make women worry. Japanese women
have trouble negotiating choice in US medical system; in Japan, a doctor
recommends.
Alexandra: That choice in the US
medical system doesn't translate to other cultural communities, like
NYC hospital. Sees this as an issue in the coming years, how can
services be delivered to other populations in the system? Will
those patients want a say in the ethics of care and how it's delivered?
Noga: Services in Israel also stratified.
There is national health insurance but have limited options. Many
things you have to pay or seek out supplementary insurance.
The Internet and books allow immigrants, Bedouins, Arabs, to access
information. Perhaps not care.
Yael: There is a group of women
that choose prenatal diagnosis. Well educated, Ashkenazi, middle
class, not religious.
Azumi: Japan has national health insurance:
state pays 70% and individual 30%... Because doctors tell patients
what to do, they have more responsibility, have to be perfect.
Eva: New law last year regarding patient
rights. Patient has to choose what s/he wants in treatment.
Nurse and doctors inform. The principle of informed consent.
But patients don't really know what to do. They ask what to
do, and do that.
Yael: Comes from genetic testing,
patients ask what to do but role is to provide information. [Conference
feedback: She would really like to see a listserv come out of this conference
so that we can communicate and publish if there are other conferences.
For the entire RD group.]
Alexandra: Curious about panel on commercialization.
How does this relate to genetic technologies?
Eva: The main problem, "the technological
imperative." We take one step at a time.. Her question
is "do the women have a real choice" when faced with amniocentesis
results? They have to choose to terminate within a very short
period of time to remain before 25 weeks. Some continue.
But when you put on the choice to terminate, these women feel guilty
for years. Perhaps better not to have to choose.
Alexandra: In this country, the Christian
right believes the fetus/embryo should have the status of personhood
in the law. Very worrisome as women are given more and more information
regarding genetic disorders that may lead to choosing to abort but from
the other direction there is a rhetoric that these are people.
Very difficult for women to manage, anxiety-producing information.
Eva: In Norway, women have the baby at
22-25 weeks when they are some of these disorders but then they die
and . Not abortion nor miscarriage. But delivery of wanted
baby instead of termination. So that those babies are delivered
and then not supported medically.
Alexandra: In the US, wife of military
personnel chose to abort but had to leave military health system because
they wouldn't provide service. Sought reimbursement from outsider
provider, but insurance wouldn't pay. Saw it as homicide rather
than therapeutic abortion.
Azumi: In Japan, abortion allowed according
to women's health but fetal health no. Because of the disabled
persons' movement, abortions for fetal disorders not covered by health
insurance. Movement to create new categories in provision of abortions.
Until 1996, there was a eugenics protection law which allows abortion.
There is a list that includes muscular dystrophy, Hansen's Disease.
A complex history for abortion. Difficult to contract prenatal
testing. Makes women's attitudes, worry about children having disabilities.
They know if they chose to terminate, may be criticized as discrimination.
Hide it.
Elizabeth: Pressure to terminate abnormal
fetuses by medical professions, families. Not really a choice
because questioned about WHY they had THAT child afterwards.
Eva: Case in Norway with twins.
One Down's and woman chose to terminate that one. Woman, providers
questioning, did we terminate the right twin?
Elizabeth: A patient of hers used PGD
trying to avoid cystic fibrosis but end up with child with Down's
syndrome. There is an assumption that the more technology you
have the better your outcomes but not.