Seeking the court's approval for genetic testing

An update from a regular series written by Mr Robert Wheeler, director, department of clinical law, where he considers various aspects of clinical law that our nursing and medical staff rely on when caring for patients.

In a judgement reported 10 days ago, the Court of Protection made an order concerning a man in the late stages of a degenerative neurological disease. The patient, NLH, had at an earlier stage of his illness made it clear to a social worker and a manager at his nursing home that he wanted his child to be made aware of this disease, and that since the child may have inherited the illness, he should have the opportunity in due course to decide for himself whether to be tested.

At that stage, no action was taken to inform NLH’s child. Later, a family court had declared that the outcome of DNA tests on NLH would be of the utmost importance for any of his children. This would not only allow disputes over paternity to be settled, but also (should NLH’s paternity be confirmed), any child of his could at some stage be made aware of his or her father’s heritable disease, for the reasons that NLH had expressed whilst he retained his capacity.

As the legal process to obtain his DNA proceeded, NLH deteriorated rapidly, now lacking capacity to consent for the buccal swabs to be taken from him. As a matter of urgency, lest he die before these could be taken, it was decided to make an application to the out of hours judge in the Court of Protection. The application to take the sample and test the DNA was supported by the Official Solicitor, who acted on NLH’s behalf. All agreed that there were overwhelmingly strong arguments to establish whether he was the father of the child.

The court made a declaration that these activities were lawful. It is understandable that the local authority dealing with the family made such an application, since the request for paternity testing would need to be dealt with in a higher court. But absent the need for the family court to deal with paternity for other reasons, the ‘overwhelmingly strong arguments’ for testing NLH would, if he had been in a hospital setting, have made it very likely that the test would have been performed without an application to any court. Such a decision would have taken his wishes and feelings into consideration. His family had agreed that testing was in NLH’s interests and those of his children, and there would be clinical consensus.

We much more often ponder on patients’ advance refusals, such as refusing blood transfusion, rather than advance requests for treatment. A request made in advance of becoming incapacitated should be taken into account in any best interests decision; an example of this is a request for delivery by caesarean section. Refusals are articulated through advance decisions on paper, or in person, through the appointment of a lasting power of attorney. By contrast, NLH’s assertions to the care manager and social worker (although falling short of consent to a buccal swab) nevertheless gave a firm indication that he wanted his children to be made aware of their risk of inherited disease, a powerful oral statement of his wishes and feelings.

The Mental Capacity Act s4(6)(a) places special emphasis on written statements that a patient makes before losing capacity, since they provide an opportunity to understand the patient’s wishes. Written statements of this type should be taken as seriously as those made by patients with capacity.

After this proceeding had commenced, but before this order was made, an employee of the DNA testing company took the sample from NLH with the agreement of his family, but with neither his consent (lacking capacity to provide consent) nor the approval of the court.

As an important aside, the judge took a very dim view of this behaviour. Despite an application to the court and the case’s listing for hearing in the Court of Protection, the buccal smear was taken from NLH before the order was made. The judge made it crystal clear that in these circumstances such practice was unlawful: ‘... there is always a judge of the family division on duty ... 24 hours a day, every day of the year, to deal with urgent applications, usually by telephone’. This is a serious matter, potentially incurring financial compensation if a breach of the patient’s human rights is established.

We all need to remember this; if we choose to make an application to court to determine whether our clinical plans are lawful, we then must sit on our hands until the order we seek is made. 

Robert Wheeler
Department of clinical law
April 2019