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In this age of genetic knowledge, where is the line drawn in a doctor's duty to disclose?

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Improvements to the fitness to practice process aim to reduce stress for doctors going through investigations

The case of ABC -v- St George’s Healthcare NHS Trust and others is unusual although with potentially long-reaching effects, depending on what the High Court decides.

ABC’s father was convicted of manslaughter for shooting and killing her mother and sentenced to a hospital order. He was later diagnosed with Huntington’s Disease, a progressive neurological disease with a strong genetic element meaning that if a parent has the gene, there is a 50% chance that their child will too and therefore develop the condition. Huntington’s Disease is ultimately fatal but death usually follows a number of years of significant and debilitating neurological symptoms.

ABC’s father did not tell her of his diagnosis, particularly when she fell pregnant as he thought that she might terminate her pregnancy. Clinicians at the Trusts treating him held a number of meetings when it was discussed whether ABC and her two sisters had a “right to know” that they had a 50% chance of having the disease, and passing it on to their own children, but the conclusion reached was that ABC’s father had the right to keep his diagnosis confidential.

ABC was accidentally informed by a clinician of her father’s diagnosis. She was tested and found out that she also had the gene. Her own child cannot be tested until the age of 18.

ABC’s case against the NHS Trusts is that they had a duty to disclose her father’s diagnosis to her and, if they had, she would have sought testing herself and would have had a termination of her pregnancy.

Initially the courts struck out ABC’s claim stating that it had no basis in law. The Court of Appeal, however, considered guidance released by professional bodies including the GMC which states that it may be justified to disclose personal information about a patient without their consent in circumstances where others are at risk of death or serious harm. The Court of Appeal reinstated the claim as it found that there was a reasonably arguable case. The issues in the case remain unheard and, unless the claim settles, will be heard in the High Court in due course.

As we, and our clinicians, find out more about the interplay between genes and medicine, the central issue posed in ABC is likely to be raised again: do our children (and our children’s children) have a right to know about what genes they may have inherited? Is it right to impose this duty on healthcare professionals and litigate against hospitals if they don’t inform families?

ABC’s case remains to be heard and so we don’t know whether the court will impose a duty on clinicians in specific, limited circumstances to inform relatives about their potential genes or whether they will reach the conclusion that a patient’s right to privacy is paramount and cannot be breached.

Genetic testing has become cheaper and so much more prevalent in recent years with postal DNA kits so that members of the public can find out more about their ancestry and also their health. In the future, could a duty be imposed on these companies to let people know about their own genetic predisposition to disease? Also, do people want to know? The odds of passing on Huntington’s Disease are very high and the disease itself is progressive and incurable. ABC felt that she had a right to know but would everyone? Would she have felt differently with a different condition or with lower odds?

This case poses a number of difficult questions about how we use deeply personal information which, in the past, we simply didn’t have access to. Although the facts of the case are somewhat novel, I can see these issues becoming more prevalent in healthcare, and perhaps commercial settings, in the future with the law having to work hard to catch up.