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

Fine tuning medical diagnoses to rare genetic disorders

298x232-dna_genetic_test-298x232_dna_genetic_testMeiklejohn v St George’s Healthcare Trust [2013] EWHC 469 (QB) – read judgment

Richard Booth of 1 Crown Office Row acted for the claimant in this case. He is not the author of this post.

There is no doubt that medical diagnosis and therapy are struggling to keep pace with the genetic information pouring out of the laboratories and sequencing centres. And the issue of medical liability is being stretched on the rack between conventional treatment and the potential for personalised therapy. Treatment of disease often turns out to be different, depending on which gene mutation has triggered the disorder. However fine tuned the diagnosis, it may turn out to be profoundly wrong in the light of  subsequent discoveries.

This is perhaps an oversimplified characterisation of what happened in this case, but it exemplifies the difficulties facing clinicians and the courts where things go wrong, against the backdrop of this fast-moving field of scientific endeavour. Continue reading