Legal duty to share genetic information goes to trial

By Anna Middleton

Are the views of patients and the public relevant to determining what is in the public interest? If so, what are those views? Maybe it’s time we asked.

By Vicky Chico and Anna Middleton

Following on from our previous blog on the legal duty to share genetic information, we are excited to see that the Court of Appeal announced yesterday that a trial will go ahead. In summary, the daughter of a man with Huntington’s Disease is suing the hospital caring for her father, claiming that the hospital had a duty of care to share the father’s HD diagnosis with her, against her father’s wishes, so that she could seek out her own genetic testing (and potentially have a termination of pregnancy).

Genetic counselling conversations about sharing information in the family
Genetic counselling conversations about sharing information in the family

Yesterday’s announcement allows the case to be remitted for trial and will likely involve leaders from the genetics world being called as witnesses. Here, the practice of Clinical Genetics in the UK will have its moment in the legal spotlight. Of particular interest is the application of existing professional recommendations on when it is acceptable to breach a person’s confidentiality and share their genetic information with relatives. The encouragement to share genetic information within the family, and actually sharing information even against a persons wishes (in very special circumstances and when it is practical to do so) has been happening within clinical genetics practice for many years. Take for example an individual with an inherited form of young onset bowel cancer. If they refuse to tell their family that they are at risk from also having the same disease, then such relatives will not be able to access genetic testing nor bowel cancer screening, which could potentially save their lives.

The case was previously struck out; we briefly explain the judges’ reasoning for overturning the previous court decision. Lord Justice Irwin, with whom Lady Justice Gloster and Lord Justice Underhill agreed, dealt in turn with each of the previous judge’s (“Nicol J”) nine policy reasons for striking out the claim on the basis that imposing a duty of care would not be just, fair and reasonable.  The thrust of the previous judgment was that clinicians would be exposed to conflicting duties of care. In addressing each of the nine policy concerns, his Lordship did not overlook the difficulty that might be experienced by clinicians . However, in his view, such difficulties are not new and are already tackled head on in the existing professional guidance (in place in 2009) provided by the relevant professional bodies (namely; the Royal College of Physicians, the Royal College of Pathologists and the British Society of Human Genetics entitled Consent and Confidentiality in Genetic Practice, Guidance on Genetic Testing and Sharing Genetic Information (2006) and GMC Confidentiality (2009)). Both provide guidance about when a clinician might disclose information to a third party in breach of patient confidence. Thus, his Lordship noted the clinician is already obliged to conduct a balancing exercise where there is conflict between the patient’s interest in maintaining confidence and the relatives interest in disclosure. This balancing exercise results in a professional obligation, the question for the court was then whether this professional obligation is actionable in law. His Lordship felt the question of whether the implications of such a legal duty might be ‘contrary to the public interest….might properly be the subject of expert evidence’ at trial.

Therefore, it seems that the Court of Appeal took account of the existing evidence of professional opinion in determining what might be in the public interest in the question of whether it would be just, fair and reasonable to impose a duty to disclose. This seems to be part and parcel of the right approach to determining public interests. However, are the views of patients and the public also relevant to determining what is in the public interest here? If so, what are those views? Maybe it’s time we asked.

We are looking forward to following this case at trial and seeing how the court scrutinises the practice of genetic counselling. If the claimant wins, this will give a legal endorsement to the guidance that is already in place in practice. However, it could in theory, put pressure on clinicians to exercise a duty of care to patients they have never met. How this plays out in reality, remains to be seen.