The Sunday Times coverage (www.timesonline.co.uk/tol/news/science/genetics/article6999861.ece) of the various genetic conditions which can be tested prior to the implantation of an in vitro embryo, has generated considerable debate, not least because some of the identified diseases are definitely not life-threatening.
Nevertheless all the embryos in question will be discarded, or as the current Chair of the HFEA, Lisa Jardine, convolutedly described the process in a BBC World Service debate on New Year’s Day, be ‘allowed to cease to exist’.
The Sunday Times article identified various public leaders who would not have passed the selection test, including Charles de Gaulle and Abraham Lincoln, as well as Sampras from the world of sport and the classical musician Rachmaninoff.
But the current deliberations of the HFEA in relationship to the genetic testing of embryos (pre-implantation genetic diagnosis or PGD for short) are taking them into even murkier ethical waters.
We would like to draw attention to two aspects of the most recent proposals which were unfortunately not covered by The Sunday Times’ article.
Note that some patients wish to avoid having to face genetic information about themselves, whilst nevertheless wishing to use only those embryos which are free from genetic disease. For these patients there are two possible solutions:
1. Exclusion Testing
If there is known genetic disease on some side of the family, say for example from the maternal grandfather, all embryos can be tested to see if they carry that specific genetic heritage but are not tested to see if they are carrying the actual disease. All such embryos will be destroyed, whether healthy or not, simply because they are carrying granddad’s suspect DNA. The parents will not have to face any uncomfortable information about their own genetic future, and those performing the tests will be none the wiser either. This process is defended on the basis that a patient has the right to testing but also a right not to know the outcome! It is only possible, however, if there is still access to the older family member’s DNA.
If not they can pass to:
2. Non-disclosure Testing
Once again giving credence to a patient’s right not to know about their own genetic future, it is possible to test embryos and identify those with genetic disease, but not tell the parents and simply implant the healthy ones. The clinicians will know the full results but not the patients.
A problem arises of course if all are unhealthy and none can be implanted, thereby making it obvious to the couple in question that they are carrying the disease.
A solution (for once not meeting with great favour given the usual largesse of the HFEA) would be to pretend to implant embryos. This is described in HFEA papers as ‘dummy’ treatment.
It is worth noting that if prospective parents using this form of testing are not carriers of any genetic disease in the first place, then theoretically they do not even need to use IVF at all. Should they be exposed to the risks of IVF treatment when it is completely unnecessary? Problems. Problems.
As to the famous list of 116 diseases (24 more to be added by all accounts), this represents no particular selection of which diseases are OK and which are not, what degrees of abnormality are involved, whether they are low or high penetrance, early or late onset. It is primarily a list of what is available at the moment. As more tests are developed, you can be sure more and more diseases will be added to the list.
What price a perfect child? No price too high if the HFEA has its way.
By most serious agreement, however, there is no such thing as a perfect genome. Perhaps the Authority should be told.