Techniques to ‘read’ the human genome are becoming better and cheaper at a very rapid pace. As DNA of a foetus can be found in the mother’s bloodstream, it is possible to unravel the genetic make-up of an unborn child.
New screening methods will not only reveal severe chromosomal abnormalities, but also increased risks of developing diseases later in life and non-health related traits. Do we have a right to obtain this information about our future children? Some fear an increased abortion rate (as the test can be performed very early, an abortion pill would suffice to terminate a pregnancy). Even if only testing for ‘grave illnesses’ is allowed, who will determine which ones are included? For example, some women may prefer to abort a foetus with a high risk of developing breast cancer. Others may feel that this is information that should not be disclosed to the pregnant woman, but that should be mentioned in the child’s confidential medical record once born and yet others may feel that this is something that should not be tested for.
An additional difficulty is that although the entire genome can be read, only a very small fraction of this huge amount of information is understood. This means that predictions are often inaccurate and expressed in terms of probabilities. Thus, people will often be given false or incomplete information on which they might base important decisions.
In this project, we will analyse all these problems and formulate recommendations.