Doctors weigh in on ‘designer baby’ phenomenon
SIX years ago when Suzette Jackson and her husband, Aaron decided they would try to conceive through in vitro fertilisation, if they could have chosen certain characteristics for their twin babies they would have flatly refused.
For them, it was more than enough that Suzette had conceived, let alone given birth to two healthy babies.
This was an easy decision for the Aarons.
But for some parents, the decision is not as simple. For example, in 2004, when scientists took the decision to create five healthy babies to provide stem cells for siblings with serious non-heritable conditions, there was a great public outcry. Many condemned the move as being “unlawful” and “unethical”.
The babies were created using a technique called pre-implantation genetic diagnosis (PGD, which involved testing the embryos for a tissue type match for the ailing siblings.
Indeed, since the upsurge of advance reproductive technologies, doctors are now closer to creating these customised babies, popularly referred to as “designer babies”, which are essentially free of genetic disorders such as sickle cell and Down Syndrome. What is more, is that the PGD technology gives parents the option of choosing the sex of their baby.
“In my position at the time, I just wanted to get pregnant and it would not really matter the sex of the baby or anything,” Suzette Jackson told Sunday Observer recently. “I was married for so many years and I just wanted to have kids.”
But local doctors believe that while PGD can be useful in ensuring that a baby is born free of genetic defects, choosing the sex of that child is taking it too far.
PGD is offered to an infertile couple and it is primarily used to identify inherited diseases.
Advanced reproductive techniques involve using in vitro fertilisation to fertilise eggs with sperm in ‘test-tubes’ in a laboratory. It is possible to choose the sex of the embryo using advanced reproductive techniques during IVF. Doctors can do this by sorting out a sample of the father’s sperm and only fertilising the egg with either ‘male’ sperm or ‘female’ sperm.
The fertilised egg grows for a few days before a single cell is removed and tested to find out either the sex of the embryo or if abnormal genes are present.
Embryologist, Denise Everett, who has been instrumental in the Fertility Management Unit’s (FMU) over 35 per cent success rate with in vitro fertilisation, said the FMU does not make designer babies. However, she noted that personally, choosing the sex of a baby is unnatural.
“We don’t have control over what the result is. That is not a routine thing that is done in most centres, so there is a misconception that when we do IVF we know exactly what the outcome is going to be,” she said.
“I would not do it if a woman had two daughters and she wanted to have a son…. you have to justify why you are doing it. What are you screening for.”
Additionally, Everett said PGD would be out of the reach of many Jamaicans because it would be too expensive. Currently, in vitro fertilisation costs over US$9,000 and PGD would incur an additional cost.
“Is there a need for it ? How many patients would actually do it? How can we justify doing it?” Everett said.
“There is a market, there is a call for it, but I don’t know how big the call will be in Jamaica. As far as Jamaica goes, it’s very early stages for us to do it.”
Dr Deanna Ashley, former director in the Ministry of Health’s Promotions and Protection Division and veteran pediatrician, said while she embraced the fact that the PGD helps reduce the chance that a child will be born with a genetic disorder, choosing the sex of the child is taking science too far.
“I certainly would be a part of any effort that would ensure that a child is not born with genetic problems,” Ashley said. “But for them (doctors) to start picking and choosing the sex of a baby has major ethical issues.”
Dr Alverston Bailey, President of the Medical Association of Jamaica agreed. He said choosing the baby’s sex is abusing the technique.
“My opinion about PGD is that, especially when it is used to detect genetic diseases, it can be a very useful tool for obstetrician and gynaecologist as it would save patients a tremendous amount of stress, both psychological and physical, if they are to determine if the embryo has a genetic flaw before gestation takes place,” he said.
“I think the concept of procreative liberty should be brought into play because a defective embryo should not be implanted.”
Dr Bailey, who is a family doctor, explained that PGD is a useful alternative to the present investigative tools that are used to detect abnormalities in the fetus such as amniocentesis where a small amount of the amniotic fluid is removed from the pregnant uterus around 16 weeks.
Another test that is done is called Chorionic villus sampling (CVS), which is a form of prenatal diagnosis to determine genetic abnormalities in the fetus.
“This also is a challenge in that this has to be done fairly late in pregnancy, usually between 10 to 16 weeks. And so it (PGD) is a reasonable alternative investigation,” he said, adding that women 35 years or older who have frequent miscarriages and couples who have repeated failure of invitro fertilisation normally turn to PGD.
Dr Bailey said one of the arguments for PGD is that the current technology can help to eliminate some of the genetic diseases such as cystic fibrosis and haemophilia in the future. Another argument is that most of the other tesst for genetic disease are normally invasive.
“This information reveals that the fetus is defective, the options available to the parents are to have a child with a genetic disease or to have an abortion,” he said. “This is a difficult and oftentimes an emotionally troubling decision, especially in an advanced pregnancy. Therefore, PGD is performed before pregnancy begins and this dilemma is eliminated.”
Some persons with genetic diseases or those who know they are carriers, he added, frequently choose to stay childless in order to avoid the risk of passing on the disease. However, PGD allows them the opportunity to have a child free of their particular disease.
Dr Bailey said the other argument is that when PGD becomes more widespread, the number of babies born with diagnosable genetic diseases will fall dramatically.
There are many arguments against PGD.
Dr Bailey said examination of an embryo could be used for discrimination and some people worry that PGD can be used to design so-called perfect babies.
“This, in fact, has been given an interesting description called authoritarian eugenics. This is defined as the use of corrective methods to decrease the frequency of certain hereditary traits passed on to the next generation,” Dr Bailey explained, adding that this is also referred to as ethnic cleansing.
“Some people are concerned that the single removed cell could have developed into a fetus. The church might regard it as infanticide.”
Another argument is that some genetic diseases only manifest themselves when the host is 30 or 40 years old. Some argue that a cure might be found in the interim, therefore why not allow the embryo to survive.
“Some people consider its use for selection as for social and personal reasons to be really interfering with the laws of nature , and that it should not be recommended,” Dr Bailey said, adding that the designer baby phenomenon is one of the topics that will be discussed at length at the MAJ’s Annual Symposium this week.
Meantime, obstetrician and gynaecologist, Dr Sharmaine Mitchell said she is not opposed to PGD and that there is nothing unethical about it. However, she expressed concern that in terms of the balance – the male female ratio – it might create problems down the road.