Doctors will be allowed to test IVF embryos for nine rare genetic conditions before implantation in the womb, according to a protocol document tabled in parliament on Wednesday.

The conditions are:

  • Finnish Nephrotic Syndrome,
  • Gangliosidosis,
  • Huntington's Disease,
  • Joubert Syndrome,
  • Maple Syrup Urine Syndrome,
  • Nemaline Myopathy Spinal Muscular Atrophy,
  • Tay-Sachs Disease
  • Walker-Warburg Syndrome.

The draft protocol, issued by the Embryo Protection Authority, suggests how the genetic testing should be carried out and was tabled in parliament by the government as MPs start debating the new IVF bill.

All of the listed conditions are severe, acute genetic diseases and in many cases lead to death.

All of them except for Huntington's Disease tend to appear shortly after birth. In the most severe cases, the baby lives for a few weeks or months under heavy medical treatment before it dies.

Huntington's Disease often appears when people are in their 30s and 40s and while some are only carriers of it, others inevitably develop its symptoms.

The Embryo Protection Authority said it would also consider testing for other rare diseases that have not been listed, depending on "how serious the condition is, the likelihood of it being inherited and the testimony of people affected by the condition before deciding whether to approve it for PGTM testing".

Several NGOs have criticised the practice, saying, among other things, it will only lead to eugenics - the manipulation of embryos to increase their chance of having desirable characteristics.

The draft protocol says that under the new law this will not be allowed.

Parliament will start debating a new IVF law on Wednesday. Most controversially, the government wants to allow doctors to perform genetic tests on IVF embryos before they are planted into the womb. If they detect any of these conditions, parents and doctors will be free to decide not to plant the embryo.

The embryos bearing the conditions may be given up for adoption.

The PN has yet to express its position clearly, but on Saturday, Stephen Spiteri, a doctor and the PN's health spokesperson, argued that the proposed bill is discriminatory due to its genetic testing provisions.

The IVF law was last amended in 2018, when it upped the number of eggs that could be fertilised to five, allowed sperm and egg donation, and access to IVF for gay and single women.

The government is now proposing to further widen state-provided IVF services.

It wants persons to be eligible for IVF up till the age of 45 (rather than 42), offer more IVF cycles free of charge, extend IVF to those who already have a child and facilitate egg donations and transfer of embryos from other countries.

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