Embryos without secrets. The dilemma’s of preimplantation screening.

Towards the transparent embryo? Dynamics and ethics of comprehensive preimplantation genetic screening

RESEARCH QUESTIONS 

  • Which applications of PGS do scientists/ clinicians consider to be feasible?
  • What do they consider to be the (moral) pros and cons of wider or more narrow PGS in the various possible user groups, and how would they evaluate these?
  • Which information and counselling problems are to be expected for clinicians in the context of the different types of PGS?
  • Would it be morally justified, or even morally obligatory, to offer (wider or more narrow) PGS, and if so, to which group(s) of people (IVF patients? PGD patients? Others?) and on what conditions?

Duration: June 2011 - June 2013

SUMMARY
Progressing technological development offers possibilities for a systematic offer of embryo testing to IVF-patients, the so-called preimplantation screening (PGS). In the future PGS can be used not only to select the best embryo to implant, but also to avoid the transfer of hereditary diseases and even to give parents the option to have the best possible child. The possibilities of PGS raise new unanswered ethical and societal questions and dilemmas, which this study has aimed to identify. 

The results of the study show that there is general agreement between professionals that embryo testing will be increasingly preceded by preconception carrier screening, thus enabling smart combinations of genetic testing. With regard to their own role in the process, professionals experience great uncertainty about how to tackle questions related to genetic screening, such as which conditions to test for and who should have the final say on which embryo to select, and a lack of a framework from which such questions can be answered.

Regarding the technical issues of PGS, it was found that the increasing amount and detail of information that new screening techniques offer does not automatically coincide with an increasing understanding of the prospects of an embryo. From an ethical point of view, the increasing complexity and amount of information yielded by comprehensive testing techniques will lead to challenges to the principle of reproductive autonomy and the right of the child to an open future, and may complicate the responsibility of the clinician regarding the welfare of the future child. An alternative testing approach is preconception carrier screening for a number of disorders, combined with targeted PGD for couples at high risk. This may avoid some of the ethical problems of comprehensive embryo screening. Obviously, the ethics of this alternative needs further ethical scrutiny as well. 

In a theoretical reflection, the researchers have focused on this professional responsibility of clinicians. Both the prospective parents and the clinician are responsible for minimizing health risks and maximizing a healthy outcome in an IVF-process. However, although a professional’s main duty is towards the couple and the child, she may also have to take certain public health concerns into account, such as the cost effectiveness of certain procedures. This can be conflicting with the procreative liberty of parents, meaning they have the right to choose the offspring they want. Such a conflict can especially become apparent when a decision whether or not to transfer an embryo with a viable chromosomal abnormality needs to be taken. Further qualitative and ethical research is needed to scrutinize these difficult dilemmas between patients and professionals.

 Finally, the researchers also investigated the feasibility and ethical issues surrounding whole genome sequencing and analysis of in vitro embryos. In a collaborative project with the Katholieke Universiteit Leuven and the Vrije Universiteit Brussel we found that the majority of healthy adults carry at least one mutation predicted to be ‘damaging’ on the basis of our current  scientific knowledge. Therefore, it was concluded that at present, knowledge of the genome and of the genesis of a specific phenotype is too limited to allow for meaningful introduction of WGS/WGA in the IVF clinic at the moment.