IVF Doctor not liable for failing to warn parents of genetic disorder in child – Australian Supreme Court

12280487228o6zg0Waller v James  [2013] NSWSC 497 (6 May 2013) – read judgment

So-called “wrongful birth” cases – where parents claim for the costs of bringing up a child that has been born as a result of the hospital’s alleged negligence – have long been the subject of heated debate.

Since 1999 (MacFarlane v Tayside Health Board) such damages have been refused on grounds of public policy – for the birth of a healthy baby, that is. As far as disabled children are concerned, parents can the additional costs attributable to the disability (Parkinson v St James and Seacroft NHS Trust).  Now that so much more can be predicted with a high level of certainty from pre-birth, even pre-conception genetic tests, where do we stand on public policy in wrongful birth cases where the negligence not so much in failure to treat (failed vasectomies etc) but failure to inform? This Australian case gives some indication of the way the courts may approach such questions.

Background facts

Keeden Waller was conceived by IVF using the Wallers’ own gametes. There was a fifty percent chance that he would inherit from his father a blood disorder called antithrombin deficiency (ATD), a condition that affects the body’s normal blood clotting ability and leads to an increased risk of thrombosis. Keeden suffered a stroke a few days after his birth resulting in severe disabilities, which his parents, Lawrence and Deborah Waller, alleged was the result of ATD. They brought a claim in damages against their doctor for the care of their disabled son and psychological harm to themselves. Continue reading

Genetic testing of children up for adoption

12280487228O6zG0Y and Z (Children), 25 April 2013 [2013] EWHC 953 (Fam) – read judgment

Having children is a lottery. No judge or court in the land would sanction the regulation of childbearing, however feckless  the parents, unsuitable the conditions for childrearing, or unpromising the genetic inheritance.

Adoption on the other hand is stringently regulated, set about with obstacles for prospective parents, and strictly scrutinised by an army of authorities backed up by specialist family courts and a battery of laws, statutory instruments and guidance papers. Usually the filtering is in one direction only: the suitability of the parents to the child or children up for adoption. But sometimes it goes the other way, and this case raises the fascinating and somewhat futuristic question of whether children’s chance of finding a suitable home might be increased by genetic testing.

The circumstances were somewhat exceptional here, since the local authority had ascertained from the biological father  of the two young boys in question that they might have a chance of inheriting a rare genetic disorder of the central nervous system. Huntington’s Chorea is caused by a single gene mutation on chromosome IV and causes damage of the nerve cells and areas of the brain which in due course leads to severe physical, mental and emotional deterioration. Anyone whose parent has the disease is born with a fifty per cent chance of inheriting the gene. Anyone who inherits the gene will, at some stage, develop the disease.  Continue reading

Can an individual claim ownership of “life’s instructions” – a human gene?

Yes, says the US Court of Appeals for the Federal Circuit, upholding the validity of human gene patents related to breast and ovarian cancer (Association for Molecular Pathology and others v the Patent Office and Myriad Genetics – read judgment) UPDATED

The three judge panel ruled in a 2-1 decision that the biotechnology company Myriad was entitled to its patents on the molecules because each of them represented “a non-naturally occurring composition of matter”. The court also upheld Myriad’s patent on a technique for identifying potential cancer therapies by monitoring effects on cell growth, but denied their claim on assessing cancer risk by comparing DNA sequences because the method is based on “abstract, mental steps” of logic that are not “transformative”.

This fascinating judgment is a model of clarity and fluency in this difficult area. But what does this intellectual property tussle have to do with human rights? Well, there is nothing unfamiliar to human rights lawyers in litigation over the availability of life-saving treatment  (patient B, the Herceptin case and the antiretroviral litigation in South Africa are three examples that spring to mind). And much of it begins in the laboratory, with the critical allocation of exclusivity rights. Continue reading