human rights
Eugenic cleansing in 2010
09/February/2010 03:47 PM Filed in: Health
Genetic testing - eugenics in 2010?
Every so often, as a person with a neuromuscular disorder, I receive a magazine detailing genetic research, potential therapies and new ways to test if parents are likely to be carriers of the genetic makeup that could result in a child with that disorder.
Genetic tests are already offered to couples to detect their carrier status and allow for informed reproductive decisions. A new test is to be offered to couples (and possible over the internet) where a sample of saliva can be tested for over 100 inherited impairments - including those similar to me.
The Times, today, quotes it as a "genetic test that would virtually eliminate their chances of having a baby with ...". Let's look at that sentence again 'ELIMINATES'. It's a strong word.
Genetic testing already eliminates babies who would have been born with, for example, the same impairment as myself. The form of this elimination is unlikely to be abstinence and more like increased abortions or selecting none disabled children through IVF, both of which I disagree with. Whilst the tests may reveal a child with that genetic code - it can not tell you to what level their impairment will manifest and when, in most instances. For example, I have MD and some people stop walking when they are small children and others in their 70's where it has had little impact on their life.
One of the concerns I have with couples choosing not to have a child with an impairment is that this decision is likely to be made out of ignorance. The belief that disabled people live terrible lives is still held by so many people who have little or no experience of life as a disabled person. They read in newspapers how some disabled people have such a bad life that they want to end it - so why not just stop that life from starting in the first place or continuing upon conception? Society provides a somewhat gloomy picture to the uneducated which is simply not a true reflection of life as a disabled person in the UK - and not the sort of information couples should base a life/death decision on.
Studies have shown, however, that couples are often provided with only 'worse case scenarios' when information is sought from medical professionals. It is often unbalanced and pessimistic compared to that which might be offered by a national charity support group for example.
For some couples it's the need for the child to give them what they feel is every parent's right - the joy of seeing a child do well at school, graduate, form their own relationships, bring them grandchildren etc. Any child who might not fulfil this selfish desire is another reason not to have them. If you are going to have children - you want the full monty? Of course, disabled people don't necessarily deny anyone these things. Even if they did, should all children not be valued for who they are and not what we want them to become or what they can give us in return later in life? Should not the love of raising a family be unconditional?
Today @lisybabe tweeted an article where a Russian journalist breached professional ethics by promoting the killing of disabled newborns because, amongst other things, their life would be hell. However, not everyone is in disagreement with this journalist. He argued that it is no worse than an abortion. Indeed, in the UK, it is perfectly legal to kill a full term disabled baby through an abortion.
Congratulation on the birth of your baby
I leave you with this thought.
I random search of e-cards on the net brought up cards with the following insert messages:
New parents proudly show and announce their 'perfect' babies to the world and people coo back affirming that perfect and 'bouncing' with 'ten fingers and ten toes' is worthy of congratulations. Are disabled children any less worthy of a joyous welcome into the world - or does it mark their initiation into the world of inequality? I suspect that if mothers were to be asked what did they mean by perfect - they are likely to indicate good health, not disabled or looking and behaving 'normally'. For me, it raises questions about the emphasis society puts on having none disabled children and what we define as 'perfection'. By definition, a child who is not perfect must be imperfect - a word so easily linked to less desirable, not as valued or deserving, dysfunctional or in some cultures shameful even.
The Times article on genetic testing ends with a consultant at Guy's and St. Thomas' Hospital, London, declaring the test as having an uncomfortable 'eugenic flavour' and I believe they are right.
An article I wrote in 2003 on Eugenics and disability.
Every so often, as a person with a neuromuscular disorder, I receive a magazine detailing genetic research, potential therapies and new ways to test if parents are likely to be carriers of the genetic makeup that could result in a child with that disorder.
Genetic tests are already offered to couples to detect their carrier status and allow for informed reproductive decisions. A new test is to be offered to couples (and possible over the internet) where a sample of saliva can be tested for over 100 inherited impairments - including those similar to me.
The Times, today, quotes it as a "genetic test that would virtually eliminate their chances of having a baby with ...". Let's look at that sentence again 'ELIMINATES'. It's a strong word.
Genetic testing already eliminates babies who would have been born with, for example, the same impairment as myself. The form of this elimination is unlikely to be abstinence and more like increased abortions or selecting none disabled children through IVF, both of which I disagree with. Whilst the tests may reveal a child with that genetic code - it can not tell you to what level their impairment will manifest and when, in most instances. For example, I have MD and some people stop walking when they are small children and others in their 70's where it has had little impact on their life.
One of the concerns I have with couples choosing not to have a child with an impairment is that this decision is likely to be made out of ignorance. The belief that disabled people live terrible lives is still held by so many people who have little or no experience of life as a disabled person. They read in newspapers how some disabled people have such a bad life that they want to end it - so why not just stop that life from starting in the first place or continuing upon conception? Society provides a somewhat gloomy picture to the uneducated which is simply not a true reflection of life as a disabled person in the UK - and not the sort of information couples should base a life/death decision on.
Studies have shown, however, that couples are often provided with only 'worse case scenarios' when information is sought from medical professionals. It is often unbalanced and pessimistic compared to that which might be offered by a national charity support group for example.
For some couples it's the need for the child to give them what they feel is every parent's right - the joy of seeing a child do well at school, graduate, form their own relationships, bring them grandchildren etc. Any child who might not fulfil this selfish desire is another reason not to have them. If you are going to have children - you want the full monty? Of course, disabled people don't necessarily deny anyone these things. Even if they did, should all children not be valued for who they are and not what we want them to become or what they can give us in return later in life? Should not the love of raising a family be unconditional?
Today @lisybabe tweeted an article where a Russian journalist breached professional ethics by promoting the killing of disabled newborns because, amongst other things, their life would be hell. However, not everyone is in disagreement with this journalist. He argued that it is no worse than an abortion. Indeed, in the UK, it is perfectly legal to kill a full term disabled baby through an abortion.
Congratulation on the birth of your baby
I leave you with this thought.
I random search of e-cards on the net brought up cards with the following insert messages:
- Ten Little Fingers, Ten Little Toes
- Bragging Rights
- A Purrr-fect baby
New parents proudly show and announce their 'perfect' babies to the world and people coo back affirming that perfect and 'bouncing' with 'ten fingers and ten toes' is worthy of congratulations. Are disabled children any less worthy of a joyous welcome into the world - or does it mark their initiation into the world of inequality? I suspect that if mothers were to be asked what did they mean by perfect - they are likely to indicate good health, not disabled or looking and behaving 'normally'. For me, it raises questions about the emphasis society puts on having none disabled children and what we define as 'perfection'. By definition, a child who is not perfect must be imperfect - a word so easily linked to less desirable, not as valued or deserving, dysfunctional or in some cultures shameful even.
The Times article on genetic testing ends with a consultant at Guy's and St. Thomas' Hospital, London, declaring the test as having an uncomfortable 'eugenic flavour' and I believe they are right.
An article I wrote in 2003 on Eugenics and disability.
