Will genetically-informed medicine upend medical confidentiality?

ABC v St George’s Healthcare NHS Trust and Others [2017] EWCA Civ 336 – read judgment

All the advocates in this case are from 1 Crown Office Row. Elizabeth-Anne Gumbel QC, Henry Witcomb QC and Jim Duffy for the Appellant, and Philip Havers QC and Hannah Noyce for the Respondents. None of them were involved in the writing of this post.

In a fascinating twist to the drama of futuristic diagnosis, the Court of Appeal has allowed an argument that doctors treating a Huntington’s patient should have imparted information about his diagnosis to his pregnant daughter to go to trial.

The background to this case is outlined in my earlier post on Nicol J’s ruling in the court below. A patient with an inherited fatal disease asked his doctors not to disclose information to his daughter. The daughter came upon this information accidentally, shortly after the birth of her child, and found, after a genetic test, that she suffered from this condition as well, which has a 50% chance of appearing in the next generation. Had she known this, she would have sought a termination of the pregnancy. She claimed that the doctors were liable to her in damages for the direct effect on her health and welfare.

A claim for “wrongful birth” is well established in law; no claim was made on behalf of the child, who was too young to be tested for the condition. The twist is the duty of secrecy between doctor and patient, which has held very well for the past two centuries. Short of confessions pertaining to homicide or information regarding contagious diseases, the dialogue behind the consulting door should end there.

The problem is that the typical medical relationship only pertains to the pathology of the individual patient. Now that tests are available that make every single one of us a walking diagnosis not only for our own offspring but those of our siblings and their offspring, the one-to-one scenario collapses, along with the limited class of people to whom a doctor owes a duty of care. The pregnant daughter who came across the information about her father’s condition was not the defendant doctor’s patient. In pre-genetic days, that meant there was no duty of care relationship between her father’s doctors and her. But the certainty of hereditability brings her into that circle. Continue reading

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