Pre-Genetic Implantation Diagnosis Pros and Cons

Designer Babies Debate Caused by Birth of First BRCA1 Screened Child

© Joe Elvin

Oct 14, 2009
Mothers are Getting More Options for Pre-screening, Jon Ovington
A debate which discusses arguments for and against pre-screening unborn children for genetic mutations using PGD and whether designer babies lie ahead.

Pre-Genetic Implantation Diagnosis (PGD) is a form of IVF (in vitro fertilisation) but with an additional test to search for faulty genes in the created embryos. Once the embryos have grown to the 8-cell stage, one or two cells are removed and tested for the faulty gene. Embryos free of any mutations are implanted into the womb in the hope that one will grow into a foetus whilst faulty embryos are discarded.

In January 2009, a British mother gave birth to a healthy baby girl having used this process to ensure her child did not inherit her breast cancer causing BRCA1 gene. The birth was the first of its kind and has been slammed by many disability and pro-life organisations as unethical.

Issues with Pre-Genetic Implantation Diagnosis

Although those with a faulty BRCA1 gene generally have around an 80% chance of developing breast cancer, pro-life organisations are particularly upset that embryos which could grow into perfectly healthy human beings are being discarded. PGD has been used many times to prevent children being born with genetic diseases such as cystic fibrosis and haemophilia but this is the first time it has been used to look for a gene which doesn’t guarantee the carrier will inherit the condition.

Josephine Quintavalle is director of the campaign group Comment on Reproductive Ethics (CORE). She said, “We should be looking for ways to cure breast cancer not killing those who have it.

“These tests are very much in their infancy. We know nothing of the long-term consequences, for example, when the child itself wants to reproduce. We are dealing with something we don’t know anything about.

“What are you doing to that embryo when you take cells away from them? Not all of the cells are identical which is why tests are sometimes inaccurate. You could be taking any particular talent.

“Currently it serves no purpose because it is only being used to identify embryos with so called defects or the possibility of one. It is not at all for curing disease.”

The birth of this baby girl, whose parents wished to remain anonymous, has widened the boundaries of acceptable use of PGD. Although these boundaries are carefully and strictly monitored in the UK by the Human Fertilisation and Embryology Authority (HFEA), there are fears that PGD could soon be used on genetic features which are undesirable rather than deadly.

Aidan Harfitt from RADAR, the UK’s largest disability campaigning organisation, is also wary that increased use of PGD could add to the lack of understanding towards disabled people in society.

He said, “There is still a stigma and a lack of understanding towards disabled people. There’s a fear among people who don’t live with disability that it is essentially life over. A lot of people will point out that that is not the case but when you have a society that is fixated with disability as a sort of curse this takes all the attention from the value of a disabled life and the achievements of a disabled person.

“It reduces them to a product of their disability. Pre-screening seems to be the one area where these attitudes which have been forming for a long time can still be expressed.

“I fully understand that there is a lot to think about and an awful lot of choices to make but no matter how complex it gets, those who think that pre-screening is going to free the world of disability is kidding themselves.”

The Future of PGD – Designer Babies?

Despite these concerns, the baby girl’s mother has not ruled out having more children using the same procedure in the future. Following the initial backlash condemning the birth, scientists and cancer charities have hit back at claims that the birth was immoral.

Dr. Wei-Jun Leung, a senior lecturer of Forensic Science at Bournemouth University, believes that births of this nature could become much more common in the future and should be embraced.

He said, “If we are rich and if the technology is there than I can see it happening. If someone wants to change the baby and make the baby less prone to the disease then fine.”

“They can treat it later on or they can treat it now. What one? Who would want this baby to suffer? Why not treat it now? The bottom line is that you are trying to save a life. What is the point of genetics if we find it unethical?”

Wendy Watson, founder of the National Hereditary Breast Cancer Helpline, also backed the family’s decision all the way.

She said, “This is not trivial. If it was something to do with hair or eye colour then of course it would be ridiculous but this is not trivial so it should be allowed and accepted in my view. I think it is excellent we have the option. Some may choose to go down this route and others may not.

“There are regulations to stop this sort of thing getting out of hand. It is only going to be used on those people who have genetic mutations.”

Families who wish to have Pre-Genetic Implantation Diagnosis in order to protect their child from an inherited disease have to apply to the HFEA who will consider each case individually according to compliance with the authority’s code of conduct and the likeliness of the condition developing within the child.

Most conditions licensed for PGD are fully penetrant, meaning the condition’s development is inevitable. In this sense, the birth of the BRCA1 baby represents a new lenience in the authority’s policy.

So it seems ‘designer babies’ will remain no more than a buzz phrase for the time being but pre-screening of children is looking likely to become much more common – for better or for worse.


The copyright of the article Pre-Genetic Implantation Diagnosis Pros and Cons in Human Genetics is owned by Joe Elvin. Permission to republish Pre-Genetic Implantation Diagnosis Pros and Cons in print or online must be granted by the author in writing.


Mothers are Getting More Options for Pre-screening, Jon Ovington
       


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Comments
Oct 14, 2009 3:07 AM
Sarah Tennant :
Dr. Wei-Jun Leung's comments are rather disingenuous. There was never any intention of treating the baby; if she had been found "faulty" she would have been killed, not cured. The screening process replaces a "bad" life with a "good", it does not save the original life. Dr Wei-Jun Leung either does not understand the procedure (with the comment about "changing" the baby), or would prefer that others not understand it. Neither option is particularly consoling.
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