EVANS v AMICUS HEALTHCARE LTD

In vitro fertilisation (IVF), and the unilateral consent of the potential mother, is a circumstance that invokes both legislative and Convention rights for both parties, prior to the actual process of childbirth.

On this occasion, the needs of a single woman are driven to exhaustion, despite knowledge that her former partner has made his position clear.

Having both met in their twenties, the parties to this case were engaged to be married, while at the time, equally excited about the possibility of raising children.

Before conception could begin, the appellant was diagnosed with cancerous tumours to both her ovaries; at which point, her world quite literally turned upside down.

Following a medical consultation, the appellant learned that due to slow tumour growth, there was hope that IVF treatment might permit her the chance to carry a child to birth, and thus have the life she had hoped for. 

As part of the process, the two parties were asked to complete consent forms for the use and storage of sperm and embryos, as prescribed by the Human Fertilisation and Embryology Act 1990 (HFEA).

Upon completion of the harvesting and fertilisation process, six embryos were cryogenically frozen for use by the donors at a time two years from the treatment, and as advised by the clinic.

Roughly six months after their participation, the couple separated, and the man wrote to the clinic, expressly notifying them of his wish to withdraw from the arrangement, and to request that the embryos be destroyed.

Upon learning of this, the appellant issued proceedings against him by injunction on the stipulation that he could not withdraw from the agreement, that the embryos were to be kept frozen for ten years as per the terms of the agreement, and that the appellant was lawfully entitled to receive the embryos, despite his obvious disagreement.

By declaration of incompatibility with schedule 3 of the 1990 Act, it was further claimed that anything to the contrary was a violation of articles 2 (Right to life), 8 (Right to respect for private and family life) and 14 (Prohibition of discrimination) of the European Convention on Human Rights (ECHR), and that the embryos were afforded equal rights under articles 2 and 8 accordingly.

Schedule 3 of the HFEA 1990 Act was drafted to address all matters relating to consent and use of gametes or embryos, and while it was contended that paragraph 2(1)(a) provided that consent allowed for the treatment of two people acting ‘together’, it is also clearly provided for in section 4(1)(b) that no person shall:

 “[I]n the course of providing treatment services for any woman, use the sperm of any man unless the services are being provided for the woman and the man together or use the eggs of any other woman, except in pursuance of a licence.”

HFEA ACT 1990

This translated that the written withdrawal by the appellant’s former partner had vetoed the use of the embryos in the absence of his consent, and the family court adopted the same line of argument, before dismissing her claim.

Having been appealed before the Supreme Court, the implications of Convention rights and incompatibility were given greater consideration, along with commentary by the Secretary of State, as required under section 5(2) of the Human Rights Act 1998.

Adopting the position that the case revolved around the right to bring life into being as opposed to a right to life, the Court held that the appellant needed to recognise the complexities of the IVF process, and that careful scrutiny of the Warnock Report demonstrated that the rights of fathers had been exercised with due caution of the rights of potential mothers.

It was also held that while denial of the treatment to the appellant was a violation of article 8 of ECHR, the same principles equally applied were the Court to allow the appellant to proceed without the consent of her former partner.

Therefore, in circumstances of public policy, it was deemed justifiable to encroach upon certain Convention rights where the best interests of the people applied.

While accusations of discrimination levelled under article 14 ECHR were also valid, there were unavoidably distinct differences between natural conception and the rigours of IVF; therefore, a right to withdraw from consent was fundamental to the mechanics of such treatment, and thus did not prejudice the appellant on grounds of gender.

With regard to the rights of the embryos, it was determined under article 2 of ECHR (Everyone’s right to life shall be protected by law), that in accordance with section 37(1)(a) of the HFEA Act 1990, a twenty-four week old foetus was eligible to legal rights, but not before.

And so, any declaration that non-enforcement of rights was incompatible with the Convention could not be sustained; hence, the appeal was dismissed, with note to the need for greater clarification of individual rights during the IVF registration process, so as to avoid further painful outcomes for those involved, while the court reminded the parties that:

“[W]hile legislation modifying individuals’ private law liabilities can be expected not to infringe their Convention rights without clear justification, legislation directed to the implementation and management of social policy may well have to infringe some individuals’ Convention rights in the interests of consistency.”

REGINA (SB) v THE GOVERNORS OF DENBIGH HIGH SCHOOL

A difference of opinion regarding school uniform found itself thrust into judicial review, when a Muslim pupil refused to follow school policy, but insisted freedom to choose under the terms of the Convention.

However, when the claim was counter-challenged, the courts fell into conflict as to procedural requirements, and that of continued mediation between parties.

Seventeen year-old Shabina Begum commenced legal proceedings against Denbigh High School, after the Headmaster refused to let her wear a religious garment known as a ‘jilbab’ because it was not in accordance with existing school uniform policy; a policy which had been sensitively implemented through consultation with the local Muslim community several years prior to the incident.

The respondent had been aware of this policy for two years, and had worn the approved uniform during school without protest; however, when advised to go home and change or risk staying away from the school, the respondent claimed that such a refusal to let her ‘manifest’ her religious beliefs and removal from school, directly violated articles 8 (Right to respect for private and family life), 9 (Freedom of thought, conscience and religion) and 14 (Prohibition of discrimination) of the European Convention on Human Rights; and that denying her access to an education was also a breach of article 2 (Right to life) of the Convention.

After numerous solicitors failed to sway the school’s decision, and despite every effort being made on the part of the school to help bring the respondent back to her classes, receive home teaching, or move to an alternative school that would allow her to wear her jilbab, the case eventually went to court where the original judgment was found in favour of the appellants.

When subject to the Appeal Court, the residing judges reversed the decision back in favour of the respondent; after which, the school sought leave to appeal to the House of Lords.

Here, after lengthy exploration of the manner in which the Appeal Court approached the case, the House found by majority that while deprivation of the right to observe and manifest article 9 of the Convention prima facie warranted a claim for judicial review, it was equally important to note that article 9(2) gave express terms as to when an institution or local authority policy is deemed to have interfered with that right.

On this occasion, such a claim was simply untenable given the thorough attention to detail shown by the school when designing and approving the uniform worn at the time the respondent sought action; and so, for this reason (and many more besides) the appeal was upheld and the original judgment restored, while the House remained mindful of the errors shown by the lower courts throughout the trial when holding that:

“Article 9 does not require that one should be allowed to manifest one’s religion at any time and place of one’s own choosing.”

ALDER HEY CHILDREN’S FOUNDATION TRUST v EVANS

In a heart-rending case concerning the right to life and right to choice of venue with regard to palliative care, the parents of an almost two-year old boy become torn between the stark truth of their son’s condition, and the parental struggle to override the needs of the State, where the only voice missing is that of the child.

Born in spring of 2016, the respondents’ son Alfie James Evans was admitted to the Alder Hey Hospital in December of that year, after their son displayed a number of concerning behaviours that in turn led to various forms of treatment, albeit none of which showed any long-term success until he was later diagnosed with a mitochondrial disorder, producing a degenerative condition that itself was causing the functional erosion of his brain to the point of almost exhaustion, while also proving elusive as to the exact cause and identifiable epistemology.

As time progressed, their son eventually lapsed into a coma, and thus the decision was broached as to what possible steps were available to both the respondents and the hospital, regards how best to care for their son during the time remaining between the diagnosis, gradual and distressing deterioration, and his eventual passing.

The hospital had initially suggested that a long-term palliative plan might offer a prolonged lifespan, although the ultimate prognosis was that Alfie was now in a semi-vegetative state, and would remain so indefinitely.

However, the respondents were reluctant to accept the suggested prognosis, and so in December 2017 the applicant NHS Trust sought a judicial declaration in the High Court, to support their conclusion that there was little merit in continuing to keep Alfie under ventilatory support, whereupon the respondents moved to adjourn the hearing.

Having undertaken extensive research around the diagnosis, the respondents argued that previous symptoms were traceable to hydrocephalus; however, the brain tissue had continued to degenerate and whatever now remained was merely water and cerebral spinal fluid, as anticipated by the medical team and relevant expert testimonies.

In addition to this, the respondents had advised that Alfie be transferred to the Bambino Gesu hospital in Rome, Italy, where should no treatment prove conclusive, he would again be admitted to a third hospital in Much, Germany, albeit at significant risk to his already fragile health.

While the court extended tremendous sympathy to the plight faced by the respondents, it relied in this instance upon the expert opinion of a Professor Nikolaus Haas of the University Hospital, Ludwig-Maximilians university, Munich, who had previously remarked that:

“Based on the extensive testing already performed, I do agree with the medical teams involved that there are no useful tests that may be performed to improve Alfie’s condition. The genetic testing (i.e. whole genome sequencing) is performed by blood sampling and without any risks for Alfie. These tests may in certain cases be beneficial to delineate a new rare disease as pointed out by the doctors of the Bambino Gesu Hospital. To the best of my knowledge these tests have, even if a new disease is found, never been able to cure a patient with a similar disease pattern as Alfie shows.”

While in Aintree University Hospital NHS Trust v James, Baroness Hale had explained that:

“[T]he focus is on whether it is in the patient’s best interests to give the treatment rather than whether it is in his best interests to withhold or withdraw it. If the treatment is not in his best interests, the court will not be able to give its consent on his behalf and it will follow that it will be lawful to withhold or withdraw it. Indeed, it will follow that it will not be lawful to give it. It also follows that (provided of course they have acted reasonably and without negligence) the clinical team will not be in breach of any duty toward the patient if they withhold or withdraw it.”

Aintree University Hospital NHS Trust v James

And so, with full cognisance that Alfie had now lost all sense of vision, hearing, smell and touch response, the court was appointed the painful task of holding that the continued use of ventilation was now an exercise in futility, and that in the best interests of the child, the applicants were free to determine an end date for the treatment.

Relentlessly pursued in the Court of Appeal, Supreme Court and European Court of Human Rights, the previous judgment was consistently upheld, before being heard again in the High Court in order for a decision to be made as to exactly when the palliative care was to cease.

However, under new representation the respondents sought a writ of habeas corpus on grounds that Alfie was now being unlawfully detained in Alder Hay hospital against the wishes of the respondents, a contention that was given little credence; and upon which, the court relied upon the words of Lady Hale in the Supreme Court hearing, who stressed that:

“A child, unlike most adults, lacks the capacity to make decisions about future arrangements for themselves. Where there is a dispute, it is for the court to make a decision, as it would in respect of an adult without capacity. This is the gold standard by which most of these decisions are reached. It is an assessment of best interests that has been concluded to be perfectly clear.”

Which again concluded that the care plan now in effect was in every respect, in the best interests of their son, and that it was the express desire of the court that the respondents at least help support the medical team assigned his care.

Appealing against the decision under Rule 52.3(1)(a)(iii) of the Civil Procedure Rules, the respondents argued before the Court of Appeal that the High Court had merely continued in its support of the cessation of medical ventilation, instead of clarifying as to the lawfulness of Alfie’s alleged detention at Alder Hay hospital.

Upon which, the Court turned to Gard v United Kingdom, wherin McFarlane J had held that:

“It goes without saying that in many cases, all other things being equal, the views of the parents will be respected and are likely to be determinative. Very many cases involving children with these tragic conditions never come to court because a way forward is agreed as a result of mutual respect between the family members and the hospital, but it is well recognised that parents in the appalling position that these and other parents can find themselves may lose their objectivity and be willing to “try anything”, even if, when viewed objectively, their preferred option is not in a child’s best interests. As the authorities to which I have already made reference underline again and again, the sole principle is that the best interests of the child must prevail and that must apply even to cases where parents, for the best of motives, hold on to some alternative view.”

Gard v United Kingdom

Thus, the Court held again that:

“The application of a different legal label, namely habeas corpus, does not change the fact that the court has already determined the issues which the parents now seek, again, to advance. Their views, their rights do not take precedence and do not give them an “unfettered right” to make choices and exercise rights on behalf of Alfie.”

Before dismissing the appeal on grounds similar to those taken by the High Court.

After which, an application for the return of Alfie to Italy was presented to the High Court, based upon the granting of Italian citizenship by the Italian Ministry of Foreign Affairs to the Secretary of State for Foreign and Commonwealth Affairs, an act that was immediately refuted both on grounds of lineage and self-evident jurisdiction of the court, the latter of which was shown in Re B (A Child) (Habitual Residence: Inherent Jurisdiction) in which Lord Wilson had explained how:

“A child’s habitual residence in a state is the internationally recognised threshold to the vesting in the courts of that state of jurisdiction to determine issues in relation to him (or her).”

Re B (A Child) (Habitual Residence: Inherent Jurisdiction)

And that:

“Article 8 of Council Regulation (EC) No 2201/2003 (“Regulation B2R”) provides that the courts of an EU State shall have jurisdiction in matters of parental responsibility over a child habitually resident there at the time when the court is seised.”

Re B (A Child) (Habitual Residence: Inherent Jurisdiction)

However, the Court also noted that since the last hearing, Alfie had been successfully extubated from the ventilation unit, and was now breathing of his own accord, a change that moved the court to conclude that:

“[T]here arises an opportunity to explore creatively, ambitiously and even though it may be a forlorn hope, cooperatively, the options that may now emerge in a palliative care plan which could encompass, at least theoretically, Alfie being cared for, in his final hours or days, at home or in a hospice, or even on the ward and not in the PICU.”

Upon which, the application was dismissed, and the matter now left for the respondents and Alder Hay Hospital to hopefully negotiate as best as possible with the time remaining.

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