Some ponder 'designer' babies with Mom or Dad's defective genes

By Lindsey Tanner, The Associated Press Posted 12/21/2006 3:09 PM ET CHICAGO The power to create "perfect" designer babies looms over the world of prenatal testing. But what if doctors started doing the opposite? Creating made-to-order babies with genetic defects would seem to be an ethical minefield, but to some parents with disabilities say, deafness or dwarfism it just means making babies like them. And a recent survey of U.S. clinics that offer embryo screening suggests it's already happening. Three percent or 4 clinics surveyed, said they have provided the costly, complicated procedure to help families create children with a disability. Some doctors have denounced the practice, others question whether it's true. Blogs are abuzz with the news, with armchair critics saying the phenomenon, if real, is taking the concept of designer babies way too far. "Old fear: designer babies. New fear: deformer babies," the online magazine Slate wrote, calling it "the deliberate crippling of children." But the survey also has led to a debate about the definition of "normal" and inspires a glimpse into deaf and dwarf cultures where many people do not consider themselves disabled. Cara Reynolds of Collingswood, N.J., who considered embryo screening but now plans to adopt a dwarf baby, is outraged by the criticism. "You cannot tell me that I cannot have a child who's going to look like me," Reynolds said. "It's just unbelievably presumptuous and they're playing God." PGD pioneer Dr. Mark Hughes, who runs a Detroit laboratory that does the screening for many fertility programs nationwide, said he hadn't heard of the technology being used to select an abnormal embryo until the survey He said he wouldn't do the procedure if asked. "To create a child with a disability because a parent wanted such a thing ... where would you draw the line?" Hughes wondered. "It's just unethical and inappropriate, because the purpose of medicine is to diagnose and treat and hopefully cure disease," he said. Karen Krogstad, a 25-year-old partly deaf student in Bozeman, Mont., said she understands why parents "would go to great lengths to make sure their child will be deaf." She and her deaf friends "see ourselves as fully functional human beings who can't hear. People who wear glasses, are they disabled? No, but if you have hearing aids, to assist with hearing, you are labeled as disabled." Krogstad said she wants children someday and would be happy with a deaf or non-deaf child. But she said she wouldn't use embryo screening to have a deaf child "because I think it is wrong to choose the perfect baby." PGD Pre-implantation Genetic Diagnosis

Experts call for clearer difference between euthanasia and AMD

By Imelda Saad/Julia Ng, Channel NewsAsia | Posted: 10 November 2008 1956 hr SINGAPORE : Doctors, caregivers and religious groups in Singapore have said there is a distinct difference between euthanasia and the Advanced Medical Directive (AMD) which the Health Ministry wants to simplify. While the AMD extends a person's autonomy on how he would like to die, euthanasia is seen as an act of killing. As Singapore's population ages, the country is in the midst of a debate on how one can die with dignity. At the centre of it is the Advanced Medical Directive. The Health Ministry is studying how to make it easier for people to sign up for the AMD - a document, where you can explicitly state how you want your final days to be, if you are terminally ill. The issue now is confusion between what is AMD and what is euthanasia. Singapore's Health Ministry has stressed there has been no proposal to legalise euthanasia. Experts said it is all in the definition. They said signing the AMD to say you would rather have the plug pulled - than be kept alive by machines if you are terminally ill - is not euthanasia. Dr Chin Jing Jih, Executive Director, Centre for Medical Ethics and Professionalism, Singapore Medical Association, explained: "A lot of times, people think that when doctors switch off these life support systems, it is as if it is that act of stopping that kills the patient. "But in actual fact, it is not. It is the underlying disease that has killed the patient. We are merely removing an intervention that is no longer effective on the patient. Emotionally, it looks as if that act has ended the patient's life but it is actually the underlying illness. "We know that if we do not remove the life support, the patient will perish too in a matter of days. That is not euthanasia because if we remove these cumbersome machines and the patient is still alive, we accept that and we palliate the patient. "But if it is euthanasia, I remove the machine and the patient is still alive, then I would say... what else do I have to do to make sure the patient dies. So the intent is very clear. When doctors remove these machines, death is foreseeable, but it is not intended, so we make that ethical decision and intent is central to euthanasia." Experts believe the AMD is not a slippery slope towards euthanasia. Doctors said a key issue is in ensuring optimal palliative care to ease the pain of patients. Another point medical professionals agree on is that if euthanasia is allowed, then doctors should not be the ones administering death because it affects the integrity of the profession. Instead, euthanasia should be done by trained personnel. Major religious groups in Singapore are also strongly against euthanasia, saying it is tantamount to killing. Condemning the act as "diminishing the value of human life" has been the National Council of Churches of Singapore, NCCS, not NCSS (National Council of Social Service) which Primetime Morning had erroneously attributed a statement to about euthanasia. While both the Singapore Buddhist Federation and the Islamic Religious Council of Singapore say they see euthanasia as tantamount to the act of killing, it remains a grey area for Hindus. However, it is a grey area for Hindus. Channel NewsAsia understands that the terminally ill can choose to fast till death or refuse medical treatment, but subject to certain conditions. These include getting the blessing of the family and so long as the dying process is unaided. Meanwhile, all four religious groups support AMD. The Buddhist Federation said that in AMD, "the patient is dying in a natural way as no device is used just to prolong his/her life". - CNA/ms/sf Palliative - a drug or medical treatment that reduces pain without curing the cause of the pain