Doctors for Choice: Denying embryo genetic testing to couples with genetic disorders is discriminatory

Denying embryo genetic testing to people with genetic disorders, who may be persons with disabilities themselves, is “discriminatory,” a pro-choice doctors activist group has said.

Doctors for Choice was reacting to a proposal by Doctors for Life, a pro-life lobby group, that suggested genetic testing of oocytes rather than embryos to avoid ethical problems.

The pro-choice lobby group said genetic testing of eggs, known as polar body testing (PBT) is limiting in scope, labour intensive and carries a higher risk of misdiagnosis than preimplantation genetic testing (PGT) of embryos.

Parliament is later today expected to start discussing a government proposal to amend the in-vitro fertilisation law and include PGT as part of the treatment for prospective parents with a history of hereditary disease.

Doctors for Choice said the real discrimination happens when PGT is not allowed in Malta because it forces couples with genetic disorders to travel abroad for IVF. “These couples end up doing this at their own expense or risk having children affected by the disease. People without genetic disorders do not have to resort to PGT.”

PGT is a screening test of embryos created by IVF and provides a more accurate analysis before they are implanted in the woman’s womb.

Government is proposing the introduction of PGT for monogenetic disorders and diseases in cases where the prospective parents have a history of hereditary disease. Defective embryos will not be implanted but frozen.

The disorders that will be tested for and the eligibility criteria for such tests will be specified in a protocol produced by the Embryo Protection Authority that has not yet been published.

Health Minister Chris Fearne has promised the protocol will be published when the parliamentary discussion on the amendments starts. This debate is expected to kick off today.

Opponents of PGT fear eugenics

Genetic testing of eggs, PBT, is a diagnostic method for indirect genetic analysis and carries no ethical implications since fertilisation would not have happened yet. But it has its limitations when compared to PGT.

Opponents of the IVF amendments that include pro-life organisations and church groups insist PGT will lead to eugenics and is disrespectful to life.

Doctors for Life said testing of eggs is more ethical than PGT. “At the point of fertilisation, a new human life has begun, whether this happens naturally or in IVF. This is a scientific and biological fact and not a matter of opinion.”

The group insisted that a human embryo is “not just a clump of cells, but a living, complete organism” that is at an early stage of its development.  Doctors for Life said embryos have to be treated with respect and dignity.

Denying disabled person right to choose

But Doctors for Choice argued that denying PGT to people with genetic disorders, who may be persons with disabilities themselves, is discriminatory.

“Those who oppose PGT are opposing the rights of people with disabilities. They are telling them, ‘sorry, we won’t let you make free use of medical advances in Malta to have healthy children - go pay for it abroad’,” the pro-choice lobby group said.

It added embryos are not human persons and most of them fail to produce a pregnancy, let alone a baby. “Embryos are being used by those who want to push an anti-choice ideology to deny disabled persons their human rights.”

Doctors for Choice pointed out that there are several disadvantages to the testing of eggs. “It only tests for maternal conditions. It is more labour-intensive as it must test two polar bodies compared to testing one blastocyst and there’s a higher risk of misdiagnosis from polar body testing than from the direct testing of an embryo,” the NGO said.

Testing for monogenetic diseases caused by variation in a single gene could identify embryos that are prone to develop various conditions such as sickle cell anaemia, cystic fibrosis, Huntington’s disease, ALS, Duchene muscular dystrophy and Down’s Syndrome.

It remains to be seen which hereditary diseases and conditions the new law will allow to be tested for.

READ MORE: Testing embryos for genetic disorder before implantation