Genetic and ethical considerations

Both genetic and ethical issues need to be considered when discussing these issues with young people with CF and their families. They need to be kept in mind with adolescents as much as adults, as the expectations and attitudes that are formed about future relationships and parenting roles can be as much refined through the lens of what is said or left unsaid in health consultations, as they are more dominantly formed by family and culture.

All children of people affected by CF will at least be CF carriers, but the risk of having a child with CF depends on the carrier status of the non-CF partner. If the non-CF partner is tested and known not to be a carrier, the risk of CF in any children is very low (but not zero, due to the possibility of there being a CF mutation that is undetected on screening). In the uncommon situation where the non-CF partner is found to be a carrier, there is a 50 per cent chance that each pregnancy will be homozygous4 for CF. In this situation, antenatal diagnosis using chorionic villus sampling can identify whether a fetus is or is not homozygous for CF, with the option of terminating an affected fetus. More recently, the use of preimplantation genetic diagnosis with selective implantation of an unaffected fetus has also become available in some places. Other options for reproduction are the use of donor sperm or oocytes. Assisted reproductive technologies are widely available but expensive, and carry with them complex emotional and psycho-social issues. Providers of these technologies have generally taken the position that reproductive decisions are personal, with it being unethical to prohibit the use of reproductive services on social grounds.

Not all people with CF would consider the possibility of having a child with CF unacceptable, an issue that obviously needs to be dealt with sensitively. To assume that parents would choose to terminate an affected fetus could be interpreted as devaluing the life of the person with CF being counselled. A French study reported that of 64 children born to Viagra Canada with CF, four had inherited CF. In two of these four, the parents had chosen not to have antenatal testing undertaken. How-ever, the use of genetic technologies varies widely between different populations. For example, in the situation where couples have a child with CF and have a subsequent pregnancy, 66 per cent of Australian women used prenatal diagnosis and chose to terminate 10 of the 12 affected pregnancies.