Gene testing: another potential medico-legal precedent in the NHS

The NHS may not be a leader in medical innovation but it certainly seems to be breaking new ground in medico-legal precedents every few months (see our previous episodes on the Alfie Evans case and on the Bawa-Garba case).

This week, The Guardian announces another medico-legal first: the daughter of a man who committed suicide after being diagnosed with Huntington Disease is suing a NHS hospital trust and its doctors for failing to tell her about her father’s genetically determined illness while she was pregnant with her own daughter.

The woman’s father had killed his wife a few years earlier and was in jail when he was diagnosed with Huntington Disease.  The doctors caring for him advised him to reveal his condition to his daughter who was pregnant at the time but he refused, fearing that she might procure an abortion if she learned that she, herself, was affected.

The woman gave birth and subsequently learned not only of her father’s diagnosis, but that she herself had inherited the fatal gene.  She sued the trust on the ground that, had she known of her father’s condition, she would have sought an abortion, even though the daughter has not been tested and it is unclear if she is even affected.

A lower court disagreed with the woman’s claim that the doctors should have informed her of her father’s condition, but a higher court overturned that decision and the case is set to be tried next year.

As the article notes, the case obviously raises a hugely important question about privacy and the doctor-patient relationship: are there situations where doctors can be obliged to reveal genetic information to someone’s progeny without their patient’s consent?

But there are other important issues as well.  There is a rising movement to prevent sex-selective abortion, and the UK is having public debates on it, with the Labour Party calling for a ban on blood testing for that purpose.  If sex-selective abortion is deemed immoral, shouldn’t abortion on the basis of genetic abnormalities be too?

Another issue may have to do with the woman’s mental state.  Huntington Disease is frequently associated with severe mood swings and even psychosis.  To what extent are her legal actions a symptom of mental illness?

We’ll keep an eye on this very important case.

Leave a Comment