Prenatal genome sequencing: you can, you can…
Recently, genome-wide sequencing has become increasingly available to the general public. Decoding the genome of an unborn child can provide future parents with a huge amount of information, but do not forget that, to date, only a very small proportion of it is understandable to specialists.
Modern prenatal genetic tests are used to detect serious genetic diseases in embryos at risk. Expanding the range of available tests will inevitably increase the number of people resorting to them and the range of detected genetic traits, including predisposition to diseases.
However, from an ethical point of view, prenatal genome sequencing differs in many ways from the currently practiced approach. To date, the functions of more than 90% of human genes are unknown and, accordingly, most of the information obtained as a result of genome-wide sequencing will make little sense in the coming years (or even decades).
After analyzing the situation, the experts formulated the main problems that can be caused by prenatal genome sequencing.
Firstly, the quality and quantity of information can cause anxiety among expectant parents. The use of new technology will destroy the traditional attitude to the child developing in the womb as an exceptionally "pure" being. Anxiety about test results and changing attitudes about what is "normal" can lead to an increase in the number of abortions.
The test results may also negatively affect the attitude of parents towards the child and his upbringing. For example, if parents receive genetic information according to which the predicted IQ level of the child is very low, they can give up trying to help him in getting an education in advance.
And finally, new technology can increase the tension between the interests of parents and children. Despite the fact that parents are very interested in obtaining information to justify their reproductive decisions, children may prefer to remain in the dark about certain issues concerning them, including information that can limit their autonomy in adulthood.
Taking into account the potential harm associated with prenatal genome-wide sequencing, experts have formulated four preliminary recommendations:
- Based on the fact that only a small part of the information will be directly relevant to decision-making by the majority of potential parents, doctors should give clear recommendations about the categories of information that should be offered to parents.
- The child's right to non-disclosure of his genetic information should not be violated, except in cases when it is unambiguously useful for parents or may positively affect the child's health.
- In order to make well-considered decisions, both professional communities and the general public need to provide more information.
- Professional communities should play an active role in educating clinicians about the differences between genome-wide sequencing and traditional tests for prenatal genetic testing, as well as teach them approaches to communicating with potential parents, including explaining the compromises that have to be made in the event of a decision to conduct genome-wide sequencing.
Evgeniya Ryabtseva
Portal "Eternal youth" http://vechnayamolodost.ru based on the materials of The Hastings Center:
Prenatal whole genome sequencing: Just because we can, should we?13.08.2012