Science fiction becomes reality

Child predetermination by design (CPD) via the technology of pre-implantation genetic diagnosis (PGD) - or what is commonly referred to as creating designer babies according to parental choice - is fast emerging from the realm of science fiction onto the scene of everyday reality. Embryos with technically more than two parents already exist, but in most countries, choices in terms of a regulatory environment for this new reality still is largely lacking; and in South Africa nonexistent at this stage.

Last year, Dr Jeff Steinberg from the American-passed Fertility Institute said: “I would predict that by next year, we will have determined sex with 100% certainty on a baby, and we will have determined eye color with about an 80% certainty rate.”

The Institute announced that it planned to offer PGD services allowing for the selection of eye and hair colour for children.

Steinberg told the BBC, “I would not say this is a dangerous road. It is an uncharted road. It is time for everyone to pull their heads out of the sand.”

The backlash was widespread and intense. One bioethicist wrote on his blog that “we are constantly told that the right of a woman to reproduce is absolute, including getting pregnant, aborting if the pregnancy is ever unwanted; and now, genetically engineering progeny to order. But no ‘right’ is absolute. The time has long since passed to put some regulatory controls over the wild, wild west of IVF (in vitro fertilisation)."

Less than a month later, the Institute announced that “in response to feedback received related to our plans to introduce pre-implantation genetic prediction of eye pigmentation, an internal, self-regulatory decision has been made to proceed no further with this project.”

CPD, however, is but an add-on – albeit a potentially very lucrative one – of the original goal of PGD technology, namely the prevention of genetically transmitted incurable physical defects and illnesses.

On this front, researchers at the Newcastle University in the United Kingdom very recently have claimed that within three years, the technology could allow women whose families are blighted by disease the chance of bringing a healthy child into the world.

It further revealed the existence of dozens of human embryos with three parents – effectively two mothers and one father – which have been genetically engineered to be free from incurable muscle, brain, heart and digestive illnesses.

The technology centres on mitochondria inside cells which turn food into energy to be used by the brain and body. Each mitochondrion has its own DNA and is passed down from mother to child. Serious defects in this DNA affect one in 6 500 babies and is known to cause a large number of genetically transmitted diseases.

Scientists have found a way of swapping the diseased DNA with healthy genetic material from a donor, creating embryos free of mitochondrial disease.

Some of the moral, ethical and even practical questions posed by the potential use of the technology for predetermining traits in children - be it of a cosmetic nature or of physical enhancement such as athletic ability - are quite clear.

It would range from the spiritual level on attitudes, to the very sanctity of life itself; to the more mundane of whether in sporting competition it would be possible to draw a distinction between genetic enhancement and the use of performance-enhancing drugs to ensure fair competition.

Using the technology to avoid bringing a child into the world who may be susceptible to the development of genetically based diseases, however, is not without some serious questions and dilemmas.

The list of diseases that can be traced back to DNA coding in recent times has jumped from 70 to at least 130. It now includes diseases such as Alzheimers which, with some rare exceptions at around age 50, only develops in later life. Some of humanity's brightest minds, who throughout history have made tremendous contributions to the greater good, have and are still developing the disease.

There are even among those in favour of fast progress on this front, some concern if the structures are in place to council properly the parents who would decide to go down this route to parenthood. How will they deal with the psychological impact if the specially “designed child” does not turn out in terms of their expectations, and with the knowledge that they are effectively not the only parents involved? How will the child deal with this knowledge?

To these examples a magnitude of others can be added at this stage, ranging from the cost barriers excluding the majority of people, to the moral questions about the mini embryo farms created in the process. In the UK, some of the embryos at present, in terms of fertility laws, live for six days before being destroyed.

The questions at this stage, however, are not restricted to the moral and ethical realm. Not all the scientific questions and safety concerns have been addressed fully. No one at this point can predict with certainty how the technology will impact on the reproductive future of the first generation of “designer babies”.

Research performed on mice at Princeton University in the United States has highlighted the fact that many genes have more than one effect. The effect intended by genetic engineering may be accompanied by others which are revealed only later. The mice in question developed improved powers of learning and memory, but it turned out they also developed greater sensitivity to pain.

In the UK, fertility laws were updated last year and now leave the door open for quick updates of the regulatory environment. Which way it could head, however, is at this stage unclear.

In the US, some elements of the issue were addressed in the 2008 Genetic Information Non-Discrimination Act, banning discrimination based “solely on a genetic predisposition of developing a disease in the future”, making it clear that the act was aimed also at the rights of “unborn children”.

According to an article on "h+Magazine" at http://hplusmagazine.com, in 1990 PGD of any type was banned in Germany; in 2003 the UK banned using PGD for gender selection; and in India and China, the procedure was banned.

In an article for the "South African Medical Journal" that presently is in print, South African expert Professor Michael S. Pepper writes that “Chapter 8 of the National Health Act, the major part of the legislation in South Africa that deal with the issue of cell-based therapy, has not been promulgated. This is serious, since we have to rely on the outdated Human Tissue Act of 1983 to provide the necessary legislation. To compound this problem, the legislation in Chapter 8 is confusing and incomplete.”

The "h+Magazine" article states that “trait selection using PGD is too new – and unproven – for there to be regulatory laws in most developed countries. But many fighters in the battle for or against PGD for trait selection and genetic disease screening believe that today is the decision point that will set the precedent for future regulation (or the lack thereof) in the area.”