Sculpting the world of the future

Ada Tam

Everyone would like their child to be born ‘just perfect’. And in most cases, they are. However, things can sometimes go wrong.

Each year, there are children born with genetic diseases. Genetic disorders are caused by spontaneous ‘mistakes’ in the genetic make up of a foetus during the pregnancy stage. These changes include mutations that disrupt the function of a particular gene or a variation in the number of chromosomes in the body (a healthy human has 46). Alternatively, ‘faulty genes’ may be inherited from the parents. People with a strong family history of hereditary diseases, such as haemophilia, may decide to refrain from conception. However, those who do not have this kind of cue may be unaware that they are carriers of a disease. Therefore, they may be ignorant of the potential risk that they pose to their offspring until an affected child has been born.

Pre-implantation Genetic Diagnosis (PGD) has been hailed as a solution to this dilemma by offering couples a ‘risk-free’ pregnancy (Grant, 2003). Utilising IVF technology, eggs are removed from the mother and are fertilised in vitro with the father’s sperm. At the 8- to 16- cell stage of development, a single cell can be safely removed without any damage to the embryo. The extracted cells are screened for the genetic disease of concern. Healthy embryos are selected for re-implantation in the mother’s uterus, while embryos found with defects are destroyed (Braude, et al., 2002).

Although PGD appears to be a positive step toward reducing the incidence of genetic diseases, the procedure raises a number of ethical concerns, including issues surrounding the destruction ofhuman embryos, those carrying disease and those that are fertilised and healthy but unused.

PGD and Abortion

Banning PGD will not necessarily mean that potential lives will be saved. Prior to PGD, pregnant women who are at high risk of having a child with a genetic disorder have the option of screening the foetus for abnormalities using Prenatal Diagnosis (PND). Depending on the technique used, PND could involve removing a small sample of placental tissue (chronus villus sampling), or drawing a small amount of amniotic fluid that surrounds the foetus (amniocentesis). Unfavourable outcomes are usually followed by a termination of the pregnancy (Katz, Fitzgerald, Bankier, Savulescu & Cram, 2002). Thus, rather than aborting a three-day old embryo in the lab, the foetus that is a few months old is aborted. In some cases, the mother is deterred from conceiving in the future due to the trauma of abortion (Grant, 2003).

PGD differs from PND as it relieves the mother of any difficult decision with regard to abortion. It has been suggested that women develop an attachment to their unborn child during pregnancy, and give foetus an ethical value that is not present for embryos created via IVF. Therefore, aborting the unborn child at a few months of age is regarded as killing, whereas the 8- to 16- cell embryos that are ‘spares’ are merely “allowed to die”. Furthermore, as the negative aspect of destroying embryos is counterbalanced by the resultant birth of a healthy baby, PGD can arguably be considered as being “ethically neutral” (Cameron & Williamson, 2003).

‘Designer baby’ furore

At present, PGD remains expensive and is only offered to carriers of a life-threatening genetic disease or to infertile couples at high risk of having a child with a chromosomal abnormality. It is conceivable that PGD will become standard medical practice in the future. However, critics fear that PGD may be misused, thus being the “harbinger of ‘designer’ children” (Robertson, 2003). There is already controversy over children whose embryos were genetically selected -- ‘designed’ -- to be donors in order to save their dying sibling.

In Australia, approval for “tissue typing” is granted on a case-by-case basis by the Infertility Treatment Authority (ITA). The technique is restricted to embryos that are at high risk of inheriting a severe disorder; those in this category usually have a sibling with a life-threatening condition. Above all, donation of the new child’s bone marrow or blood from the umbilical cord is only applicable to siblings and not to either parent (Spriggs & Savulescu, 2002).

PGD in the UK is regulated by the Human Fertilisation and Embryology Authority (HFEA) and follows similar protocols to the ITA. There has been recent controversy over the birth of a tissue-matched baby in the UK by a couple banned from using the technique (Bhattacharya, 2003). The parents, Michelle and Jayson Whitaker, had a son Charlie who suffers from a rare form of anaemia. He requires requent blood transfusions and injections to survive, and his life expectancy is less than 30 years. The Whitakers were refused the procedure in the UK on the grounds that Charlie’s disorder was not inherited, being the unfortunate case of a spontaneous mutation. Therefore, the only person who would gain a direct benefit would be Charlie.

Would the future of this baby have been 'better' had she been a designer baby? How would this child feel knowing she were designed?

The idea of ‘saviour siblings’ raises ethical questions on the autonomy of the ‘designer’ child. How would the child feel knowing that he or she had been selected before birth to be a donor to save their sibling? More importantly, what impact would it have on the child should the transplant fail to save their sibling?

PGD also makes it possible to determine the sex of the embryo, introducing the notion of gender selection. At present, selecting the sex of the child is permissible under circumstances involving the prevention of diseases associated with the X-chromosome (Hason, Hamberger & Janson, 2002). Some people advocate for greater acceptance of PGD, particularly in cases where couples have four or more children of the same sex. There appear to be some cases where sex selection for the purposes of ‘gender balancing’ seems justified. According to one study (Meseguer, Garrido, Remochí, Simón, Pellicer, 2002), the situation of a gender-unbalanced family can have a significant psychological impact and be the cause for stress. This supports the idea that gender selection is in fact beneficial and perhaps even necessary for the well-being of certain children and their parents. However, the widespread use of gender selection, particularly for first-borns, will remain problematic when sex discrimination in modern society is predominantly against females.

The rights of a ‘designer’ child

While PGD can be used to detect and eliminate disease, what if the parents wanted their child to be born with a disorder? The gene that is the greatest known contributor to inherited deafness has been identified so it may be possible to screen for this disorder in the future. However, for couples who are deaf, would it be better for the well-being of the child to be deaf along with them rather than hearing? This ethical dilemma was addressed when a deaf lesbian couple attempted to increase the likelihood of conceiving a deaf child by using a sperm donor with a substantial family history of inherited deafness (Savulescu, 2002, cited in Braude et al., 2002).

According to John Harris, in a science debate organised by New Scientist magazine and Greenpeace, “to choose to bring a child with diseases or disabilities into being is morally problematic” noting that the child would “have grounds for complaint if these characteristics were deliberately chosen”. He argues further that “if it’s not wrong for a prospective parent to wish to have a bonny, bouncing brown-haired baby boy, how does it become wrong if we have the technology to grant our wish?” (New Scientist, 2002, p. 52). However, by using PGD to fulfil this ‘wish’, the “sense of children as a gift” (Bruce, quoted from New Scientist, 2002, p. 52) would be lost with children treated as more of a commodity tailored to suit parental preferences.

Seeking perfection: The new eugenics?

Theoretically, PGD can eradicate hereditary disease in the future. Such claims sound promising, and there has been evidence of public support for the use of PGD for medical purposes (Vass, 2001). However, PGD is by no means a cure for disease. What it does is establish a form of ‘selective breeding’ by eliminating future carriers. Although the technology is new, the concept is not. In the 20th Century, eugenics programs in Europe, Australia and North America led to authorised sterilisation of thousands of “social undesirables”, including those with mental retardation. It was deemed a ‘humane approach’ at the time, one stopping the spread of ‘inferior genes’.

According to Tom Shakespeare, who was born with a form of dwarfism, people with disabilities feel threatened by advances in genetic research that are capable of engineering a world “without people like them” (Kristoff, 2003, p. 21). Once diseases have been eliminated, what will be next on the agenda? Obesity? Depression? Homosexuality? With the potential to improve the human race, will these genetic tools lead to discrimination against what was once considered to be ‘normal variation’?

“One consequence of the many interventions practised at the moment is a reduced tolerance of diversity,” says Shakespeare. “And because we can now screen pregnancies for certain genetic conditions there’s also a reduced tolerance of disability. In the past, when we saw a family with a Down’s syndrome baby, we might have thought, that’s sad or that’s different. Now we ask, why didn’t you have a test? Insurance companies in the US will not cover your medical costs if you have what they call ‘elective disability’. What sort of freedom is that?” (New Scientist, 2002, p. 52)

A future where people are genetically ‘perfect’ may sound ideal. However, such a future depends on where the line is drawn between ‘normal variation’ and ‘genetic imperfection’. As stated by Donald Bruce, “The dream of perfection is an illusion. It’s who we are inside that matters.” (New Scientist, 2002, p. 52)

References

(2002). The search for perfection. (New Scientist & Greenpeace Science Debate). New Scientist, 174, p. 52.

Bhattacharya, S. (2003). Banned “designer baby” is born in UK. New Scientist.
(URL: http://www.newscientist.com/news/news.jsp?id=ns99993854)

Braude, P., Pickering, S., Flinter, F., & Ogilvie, C.M. (2002). Preimplantation Genetic Diagnosis. Nature, 3, 941 – 953.

Cameron, C., & Williamson, R. Is there an ethical difference between preimplantation genetic diagnosis and abortion? Journal of Medical Ethics, 29, p. 90.

Grant, K. (2003). Can it ever be right to make babies to order?; As Scotland prepares for its first designer children. Daily Mail, September 19th, p. 12.

Hanson, C., Hamberger, L., & Janson, P.O. (2002). Is Any Form of Gender Selection Ethical? Journal of Assisted Reproduction and Genetics, 19, 431 – 432.

Katz, M. G., Fitzgerald, L., Bankier, A., Savulescu, J., & Cram, D.S. (2002). Issues and concerns of couples presenting for preimplantation genetic diagnosis (PGD). Prenatal Diagnosis, 22, 1117 – 1122.

Kristof, N. D. (2003). The New Eugenics. The New York Times, July 4th, p. 21

Meseguer, M., Garrido, N., Remohí, J., Simón, C., & Pellicer, A. (2002). Gender Selection: Ethical, Scientific, Legal, and Practical Issues. Journal of Assisted Reproduction and Genetics, 19, 443 – 446.

Robertson, J. (2003). PGD: new ethical challenges. Nature, 4, p. 6.

Spriggs, M., & Savulescu, J. (2002). “Saviour siblings”: in Victoria, Australia, some parents are now able to select embryos free from genetic disease which will provide stem cells to treat an existing sibling. Journal of Medical Ethics, 28, p. 289.

Vass, A. (2001). Public supports preimplantation genetic diagnosis for couples at risk. British Medical Journal, 323, p. 1207.