The so-called Ashley treatment, published over the new year, has raised much hue and cry about the appropriateness of this 'drastic' treatment. For a full background to the report, please read the blog written by her parents here. I will not debate about the rights or wrongs of this case, but will discuss about the ethical issues involved and the consequences that may arise.
Three questions need to be answered when we view this ethical issue.
Firstly, the right of Ashley herself. Because of Ashley's medical condition, her mental age will remain "3 months old" for the rest of her life. Therefore, she has no ability to care for herself and hence her "rights" is at best virtual because there is no way to know how she will response towards any decision "imposed" on her. The first moral/ethical question is whether she has a right at all.
Secondly, what is the right of the parents to subject her to this treatment? Traditionally, parents has the ultimate rights to care for their children. It was accepted that parents will do what is best for their children even when it involves some form of physical punishments. However, all this change when someone thought that children should be given equal rights as adults, that they should be "counselled" like an adult. Society's rights overtake that of parents' right - hence the moral/ethical issue here. Should the parents' right be subordinate to that of society's? If the parents have the ultimate right to decide for the child, should the society impose a limit on them? After all, the society is not taking care of the child but the parents are. The government and ultimately the society is not going to provide direct support and care which the child needs. So does the society has the right to impose their belief and values on these unfortunate parents?
Thirdly, does the doctor and the ethics committee has the right to carry out the treatment of Ashley? Mankind is both blessed and cursed by medical advances. Blessed because for the first time, human can treat or change the course of disease. For the first time, human can influence the course of a disease, and not be subjected to the seemingly inexplicable random acts of a more superior power. However, with the advancement of medical science, the frontier where human can change the course of a disease is being pushed further and further, resulting in our ability to change the very basis of human life - the DNA. This is where the curse of medicine lies, we are potentially equiped with the technology to change Man himself. And I think this is the very ethical and moral issue that society is facing, with the unfortunate Ashley as an example. The society is not debating about the treatment of Ashley, but that of society itself! Let me illustrate.
Previously before the term plastic surgery was coined, skin grafting and bone reconstruction were only carried out for those suffering from severe burns or disfiguring accidents. These surgeries were carried out to help the patients reintegrate into society, to make them more acceptable and less of a freak. However with time, the society shifted its focus and doctors and society begin to redefine what a "freak" might look like. Suddenly a crooked nose or a slight asymmetry of the cheek bone which only the "patient" can see becomes a "problem" because the "patient" has less confidence to face the world (psychological disease). Any forms of pretentions were abandoned when the word "patient" was made irrelevant when surgery was carried out on that nose or chin to enable one to look like his or her favourite actor or actress. This is precisely the slippery road that society is afraid of. Can society accept that a severly autistic child's vocal cord be denervated, so that his life will be improved as he will no longer be a "nuisance" to his friend because of his uncontrolable shouting?
The curse of medicine had been present for a long time. Euthanasia, which was unofficially allowed in the Netherlands in 1985 and then officially legalised in 2000 is another ethical issue that had plaqued the medical fraternity for a long time. Locally, the Advanced Medical Directives (AMD) is arguably a variant of the spirit encompassing euthanasia. All this ethical issues arise because of the lag in ethical debates that follow medical advances. Until and unless, society as a whole - legal, medical, ethical and religious experts - can come to a common understanding and acceptance before it arises, such ethical issues will continue to haunt us.
Further reads:
http://ashleytreatment.spaces.live.com/
http://blogs.nature.com/news/blog/2007/01/big_issues_from_a_small_child.html
http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2007/01/07/MNGVENCASN1.DTL&type=health
http://www.time.com/time/nation/article/0,8599,1574851,00.html
Three questions need to be answered when we view this ethical issue.
Firstly, the right of Ashley herself. Because of Ashley's medical condition, her mental age will remain "3 months old" for the rest of her life. Therefore, she has no ability to care for herself and hence her "rights" is at best virtual because there is no way to know how she will response towards any decision "imposed" on her. The first moral/ethical question is whether she has a right at all.
Secondly, what is the right of the parents to subject her to this treatment? Traditionally, parents has the ultimate rights to care for their children. It was accepted that parents will do what is best for their children even when it involves some form of physical punishments. However, all this change when someone thought that children should be given equal rights as adults, that they should be "counselled" like an adult. Society's rights overtake that of parents' right - hence the moral/ethical issue here. Should the parents' right be subordinate to that of society's? If the parents have the ultimate right to decide for the child, should the society impose a limit on them? After all, the society is not taking care of the child but the parents are. The government and ultimately the society is not going to provide direct support and care which the child needs. So does the society has the right to impose their belief and values on these unfortunate parents?
Thirdly, does the doctor and the ethics committee has the right to carry out the treatment of Ashley? Mankind is both blessed and cursed by medical advances. Blessed because for the first time, human can treat or change the course of disease. For the first time, human can influence the course of a disease, and not be subjected to the seemingly inexplicable random acts of a more superior power. However, with the advancement of medical science, the frontier where human can change the course of a disease is being pushed further and further, resulting in our ability to change the very basis of human life - the DNA. This is where the curse of medicine lies, we are potentially equiped with the technology to change Man himself. And I think this is the very ethical and moral issue that society is facing, with the unfortunate Ashley as an example. The society is not debating about the treatment of Ashley, but that of society itself! Let me illustrate.
Previously before the term plastic surgery was coined, skin grafting and bone reconstruction were only carried out for those suffering from severe burns or disfiguring accidents. These surgeries were carried out to help the patients reintegrate into society, to make them more acceptable and less of a freak. However with time, the society shifted its focus and doctors and society begin to redefine what a "freak" might look like. Suddenly a crooked nose or a slight asymmetry of the cheek bone which only the "patient" can see becomes a "problem" because the "patient" has less confidence to face the world (psychological disease). Any forms of pretentions were abandoned when the word "patient" was made irrelevant when surgery was carried out on that nose or chin to enable one to look like his or her favourite actor or actress. This is precisely the slippery road that society is afraid of. Can society accept that a severly autistic child's vocal cord be denervated, so that his life will be improved as he will no longer be a "nuisance" to his friend because of his uncontrolable shouting?
The curse of medicine had been present for a long time. Euthanasia, which was unofficially allowed in the Netherlands in 1985 and then officially legalised in 2000 is another ethical issue that had plaqued the medical fraternity for a long time. Locally, the Advanced Medical Directives (AMD) is arguably a variant of the spirit encompassing euthanasia. All this ethical issues arise because of the lag in ethical debates that follow medical advances. Until and unless, society as a whole - legal, medical, ethical and religious experts - can come to a common understanding and acceptance before it arises, such ethical issues will continue to haunt us.
Further reads:
http://ashleytreatment.spaces.live.com/
http://blogs.nature.com/news/blog/2007/01/big_issues_from_a_small_child.html
http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2007/01/07/MNGVENCASN1.DTL&type=health
http://www.time.com/time/nation/article/0,8599,1574851,00.html
