Wellcome Genome Campus Society and Ethics Research has launched a series of films approaching the complex ethical questions raised by the ABC versus St George’s NHS Trust case. The films take a personal approach, aiming to facilitate discussion around issues that are at the centre of a case that may lead to a legal change in the patient-doctor relationships of the future. As something that will affect us all as UK citizens under UK law, Society and Ethics Research are keen for this discussion to be had as widely as possible.
As part of a series of activities to support greater understanding around this case, the films explore societal attitudes towards the legal duty of doctors relating to the use of genetic information and diagnosis, provoked by the ethical issues presented in the case.
The five films, which last a couple of minutes each, were a created in collaboration with creative specialists, Theatre of Debate. They take the form of monologues, representing the voice of the different parties involved – the family, the clinician, and the legal profession – and their varying perspectives, over a period of eighteen years. While inspired broadly by the case itself, the characters and the dialogue are fictionalised.
What is the ABC versus St George’s NHS Trust case?
‘ABC versus St George’s NHS Trust’ is a case currently in the High Court of Justice in England that is being closely followed by our Society and Ethics Research team. It raises complex ethical and potentially law-changing questions around the subject of clinicians’ duty to warn relatives in cases of hereditary diseases.
In the age of the genomic revolution, personalised medicine and big data, debates such as this are amplified as we ask ourselves the questions: would we want to know if a family member carried a hereditary risk relevant to our own health or that of our children? And, would we ourselves want to risk upsetting our relatives if we found out that we carried an inherited disorder?
These are difficult questions, with no straightforward answers for any one family. There are very often many personal and complex reasons why people choose to give or withhold their consent to share the details of their diagnosis. Whilst it is true that we would all hope to make the best decision if we were faced with this situation, with so many unpredictable emotions and scenarios at stake, how can we be sure to make the right decision? Is there even a right decision in territory as difficult as this?
"It’s my right to decide whether I share my diagnosis"
In light of this, should there be an expressive duty of care built into clinical policy to ensure that all parties are protected in making the best decision for their family, as well as wider society? What should the legal duty of a doctor be in these situations? These are the questions under the spotlight in the case of Patient ABC versus St George’s NHS Trust.
In 2016 the daughter of a male patient with Huntington’s disease had her claim against the clinicians who chose not to inform her about her father’s condition, struck out in court. The judge, concerned that a duty of care could impair the doctor-patient relationship, was not willing to progress the case in the interests of the provision of healthcare.
The daughter was pregnant at the time her father received his diagnosis, and she went on to give birth to a baby girl shortly before being diagnosed with the Huntington’s gene mutation herself. The father had withheld consent to inform his daughter about his diagnosis as he feared it would provoke her into having a termination. Whilst healthcare professionals at the time advised against his decision not to disclose the risk to his daughter, his wishes were respected under patient confidentiality.
The daughter made her ground-breaking decision to sue St George’s NHS Trust, as she believed the Trust’s clinicians had a responsibility to inform her of the risk to her health, and that of her unborn child, despite her father’s wishes. She claims that not being made aware of her genetic risk meant she was unable to make the decision to have a termination to protect the interests of her unborn child. Having now experienced early symptoms of the disease herself, there is also a 50% chance that her eight year old daughter could develop the condition, with no test available to confirm this until she is 18.
In 2017 the court of appeal overturned the court’s initial decision, and have now set a date for the trial in November 2019.
"I am entitled to know if I am at risk of an inherited decision."
What does this signify about the position on a duty of care?
The decision by the court of appeal to look at the wider implications of this case demonstrates a recognised need to review policy, and take into consideration the changing expectations of society, now genetic information is being produced so much more widely. There is an identified understanding that the law needs to keep pace with the advances in genetics, to help change medical practice to cope with the outcomes of the genomic revolution.
What do cases like this mean for the future of genomic practice?
“This could really change the way we do medicine, because it is about the duty that doctors have to share genetic test results with relatives and whether the duty exists in law,” said Anna Middleton, Head of Society and Ethics Research, part of Connecting Science, at the Wellcome Genome Campus in Cambridge.
Cases such as this highlight how genetics is changing the face of healthcare, especially with more professional careers being undertaken in genetic counselling and genetic support. It demonstrates that there is both a want and a need to support individuals who face uncertain futures in the wake of a genetic diagnosis. As genomic science progresses, and more is understood about the impact of DNA and genetics in hundreds of conditions like Huntington’s, more policy and practice development is needed to ensure that discussion of genetic risks become embedded into medical practice, and the role of ethical duty better defined.
"I have a duty of care…..to my patient"
There are many parties involved in cases such as ABC versus St George’s NHS Trust, just as there are usually many individuals impacted by one genetic diagnosis. Emotions will run high, uncertainty and fear will colour judgement and make decision-making hard. When immersed in a situation like this whether a patient, family member or healthcare worker, it will be impossible to understand all perspectives. That is why careful and informed creation of law and policy that reflects both the advances in science and the advances in societal understanding is essential.
It also goes beyond what becomes enshrined in law, to what others are able to do to enable wider debate on this contentious, often hard to talk about issue. The more it gets discussed, inevitably the easier it is to shape policy both in response to, and in anticipation of, a changing society and the shifting ideas of the meaning of ‘legal duty’.
What about you?
What do you think you would want if you were the family member of a person who has just learned about a genetic diagnosis that may also impact you?
What do you think you would do if you were in the position of having just been diagnosed with a genetic condition and you were told this information could be relevant to your relatives, some of whom you may not have a good relationship with?