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Does PGD protect future generations, or is it becoming a tool for designing them?

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Preimplantation Genetic Diagnosis (PGD) is a procedure that can be carried out during IVF in order to select an embryo with the fewest deficiencies. Cells are taken from a fertilised egg to test for undesirable genetic conditions in order to avoid passing them on to offspring. This begs the question as to what constitutes an undesirable condition? And, in the wrong hands, how dangerous is the potential for exploitation?

In the UK, the Human Fertilisation and Embryonic Authority (HFEA) are responsible for monitoring fertilisation procedures, including determining who qualifies for them. As far as PGD is concerned, families with either a history of “serious” conditions or a child with such a condition qualify, as do those who have had “a number of abortions” due to genetic weakness.

The HFEA has compiled a list to determine what constitutes a serious condition. They have come up with over one hundred, including cystic fibrosis and early onset Alzheimer’s disease. Alongside this you will also find the gene for Androgen Insensitivity Syndrome which, although carrying serious difficulties of its own, could hardly said to be deteriorating in itself.

Also listed are several genes for deafness, though not necessarily for the reasons you may think. A survey carried out in 2006 by the American Society for Reproductive Medicine has shown that, in the USA, PGD has been used by deaf parents to actively select an embryo that will lead to offspring with the same characteristic. The issue here is not particularly that the parents are depriving their children of sound, because the deaf culture experiences a difference in sensory perception. The issue is that one individual is making that decision for another individual, based on personal preference rather than concern for their survival. This is parental control in the extreme, and certainly does not seem to me to be a “serious” genetic condition that needs manipulation in either direction.

So where does the limit lie? If a gene for deafness has made it onto the HFEA’s list and can be either eradicated or opted for, which boundary will be pushed next? Will parents start using PGD to protect their children from cystic fibrosis with a side of ‘Y’ chromosome, please?

Unfortunately, this is less outlandish than it may sound. The 2006 study showed that almost half of US clinics offering PGD are willing for the procedure to be used, as its primary function, to determine a child’s sex for non-medical reasons. While UK boundaries are currently much tighter, the HFEA website provides noticeably vague information as to how UK procedures are determined.

Most recently, genes BRCA1 and 2 which are likely to lead to breast cancer have received attention in the media, thanks to the ability of PGD to remove them. Since regulations changed in 2009, any clinics licensed to offer the procedure are now able to offer BRCA-gene screening on a case-by-case basis.

This means that the HFEA has no figures for the number of those using the treatment for this reason, despite the admission from Professor William Verpoest, doctor at the Vrije University fertility clinic in Brussels, that such screening “would never be a default option" due to ethical issues. If there is no reliable third party recording instances of PGD and patients’ reasons for its use, there is an evident danger of less “serious” genetic manipulation slipping past the outlined regulations.

I cannot contest that the PGD procedure is a startling feat of science and could improve the quality of life for those with access to it. However, it should remain tightly regulated and used only for pre-defined ethical reasons, rather than on a case-by-case basis. It is when we start allowing for deviations and pushing the limits that the procedure opens itself to exploitation. Over time, these deviations become normality. If we carry on in this vein, how long will it be before the term “designer baby” constitutes a demographic group in its own right?

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