Workshop 4: Ilana Lowy, ‘‘Designer babies’: embryos and foetuses as experimental objects’

Ilana Lowy (Centre de Recherche Medicine, Science Santé et Societé (CERMES), CNRS, Paris) opened her talk stating that the dream of deciding the baby has a long tradition and practical as well as emotional importance. Lowy emphasised that it is a small object by volume but very important politically. She proceeded in explaining the recent development of perfection in medically assisted reproduction as a domesticated technique in France (women try to forget rather extraordinary measures that lead to pregnancy, naturalising stress). 

Firstly, Ilana Lowy spoke about pre-implantation genetic diagnosis where it is possible to test one cell. Lowy, used as an example PGD for thalassemia, where after the DNA is isolated from the removed cell, PCR is carried out on HBA1 or HBA2 genes using the isolated DNA as a template to produce many copies of the gene. Next, Lowy explained, the PCR-amplified DNA is sequenced and the sequence is then compared to a database of known gene sequences to determine whether or not it will cause thalassemia. PDG principle is to transfer only unaffected embryos to the patient. Hence, Ilana Lowy emphasised that in-vitro fertilisation involves planting only healthy embryos and PGD tests are conducted usually to detect genetic diseases. Lowy also mentioned the other rare possibility of bone marrow transplant for leukaemia where child is selected to be genetically compatible with the affected sibling. In this context, Lowy explained how some families decide to have another child hoping that it could be used for a transplant and save the sibling. Here, she pointed to the endless debate of whether it is instrumentalisation with other child used just as a mean. Lowy argued, however, that these are very rare cases and transplants were never a problem before the popular culture representation of the topic of ‘designer babies’.

Consequently, Lowy explained that assisted reproduction is a widely discussed topic at the moment with many academic representations as well as books, cartoons and popular culture interpretations. She emphasised that ‘design’ is a resonant phrase at the heart of this debate, often portrayed in terms of dystopia, horror and shock.

Here, Ilana Lowy used an example of public debate regarding PDG for susceptibility for cancer to illustrate how this genetic testing operates on real level. In this context, Lowy compared public debate in the U.K. to expert debate in France in order to illustrate the actual problematic at stake (as oppose to an imagined nightmare of ‘designer babies’).

Hence, she used some quotes from the British public debate to illustrate the real concerns of people, i.e.:

-   " I and many members of my immediate family are short sighted and so it likely to be genetic. Being short sighted is an disadvantage so would people like to test in embryos? I think that because you won't necessary develop breast cancer, and if you do, you won't necessarily die from it, I would not chose to have PGD to avoid passing on a BRCA mutation although I might consider it for a condition that would definitively affect the child". (Human Fertilisation and Embryology Authority, document: Choices and Boundaries, 2005, p. 13.)

-   ‘‘If I was starting a family now and I could have PGD to avoid passing on the BRCA mutation to my children, I would choose to do so because I would not want them to go through what I have seen  members of family go through, or have to make the decisions I have had to make". (Human Fertilisation and Embryology Authority, document: Choices and Boundaries, 2005, p. 13).

Hence, Lowy presented some statistics regarding what BRCA positive women think about PGD:

- 75% believed that BRCA positive women should have the option to undergo PGD

- 37% said that they would themselves have considered PGD if it were available before they completed their families

- 14% of the women who were actively thinking about future pregnancy expressed a personal interest in PGD. (U. Menon, J. Harper, A. Shrama et al, "View of BRCA gene mutation carriers on preimplantation genetic diagnosis as a reproductive option for hereditary breast and ovarian cancer", Human Reproduction, 2007, 22: 1573-1577).

Consequently, Lowy explained that the final verdict regarding PGD in the U.K. was that it is appropriate sometimes, and decision should be made depending on a specific case at hand.

Next, she compared this with the expert debate in France where ‘PGD for conditions such as inherited breast, bowel and ovarian cancer is appropriate because, carrying the faulty gene can cause significant anxiety which is not lessened by the fact that the condition is not fully penetrant’ and ‘the final decision should be made by a License Committee, which would consider the individual merits of each application’ (HFEA document, "Authority's decision on the use of PGD for lower penetrance , later onset inherited conditions", May 2006). Hence, Ilana Lowy explained that in France decision depends on classification of predisposition to malignancy:

Class I – high penetrance , onset in children, very low cure rates (eg. P53 mutations, Hippel –Lindau disease)

Class II – high penetrance , onset in children or young adults, cure possible (neuroblastoma, FAP)

Class III – lower penetrance, onset in adults, cure possible (HNPCC, BRCA mutations).

Ilana Lowy proceeded to argue that the PGD situation in Europe is very variable. There is no consistent formal legislation, only guidelines, however, in some countries, such as Germany, Austria, Ireland, Italy and Switzerland this method is forbidden. Further, in Belgium, Finland, Greece, Nederland, UK and France PGD is not forbidden (tolerated) or decided case by case whereas in Spain, Sweden, Norway and Denmark, it is legalized.

Importantly, Lowy pointed out that in 2007 PGD (including PGD for translocation: for women with serial abortions and to improve efficacy of IVF) involved less than 1000 cases worldwide where 17% of French pregnant women undergo amniocentesis and 94% of French pregnant women accept tri-test for serum markers (* alpha-fetoprotein (AFP), human chorionic gonadotropin (hCG) and unconjugated estriol (UE3)). Lowy emphasised that in terms of prenatal diagnosis, it’s not the designer baby but a foetus that is already here and the question is not how should it be designed, but whether it should be allowed. Further, she argued that molecular technology offers now non-invasive tests which are generalised (before just tested women at risk) i.e. sonograms.

Finally, Lowy spoke about eugenic futures and experimentalism as a futuristic fantasy explaining that the typical image of science-fiction dystopia misrepresents the problem in hand. Further, Ilana Lowy presented foetuses as the invisible experimental objects where women taking the photo of the baby don’t even realise what sort of medical trajectory they might have to follow. She concluded arguing that design in the case of so-called ‘designer babies’ is more on the population scale (in terms of disease eradication), not as popularly portrayed individual scale (as a consumer, aesthetic choice).

 

DISCUSSION

Firstly, some issues regarding the emotional and financial cost of Greek Orthodox tests and Jewish State mandatory selective abortions were discussed. Here, political problematic regarding the community sensitive counselling becoming for-profit company and a source of huge stigmatization was pointed out.

Further, talking about genetic counselling, it was emphasised that one thread of Ilana Lowy’s argument is about the ways in which many of the technological methods are becoming increasingly mundane, which in turn masks a lot of specific developments that need to be discussed. Consequently, it was agreed that there exists a need for more collective projects and approaches in this field.