Testing of Children Legal Aspects Jonathan Montgomery Thanks to Wellcome Trust and BUPA Foundation for funding Working with Anneke, Angela, Gill, Nina and Ingrid

BSHG Report Authorisation (consent) –Help ensure valid authorisation secured Liability (legal and professional) –Acceptable practice –Good practice Consistent with existing guidance –Generally defer testing unless benefits during childhood –But ‘broad’ view of benefit

Gillick v W Norfolk AHA [1985] 3 All ER Children’s welfare is the foundation of parental authority 2.Competent children’s autonomy should prevail over parental control

Legal Principles 1 Foundation of parental rights in children’s interests (Gillick) Courts must assess objectively children’s interests –NOT whether parental views ‘reasonable’, ‘rational’, ‘understandable’ Professionals expected to act as advocates, defining scope of choice

Who Decides - Theory No one can dictate the treatment to be given to any child, neither court, parents nor doctors... Re J [1991] 3 All ER 930, 934

The doctors can recommend treatment A in preference to treatment B. They can also refuse to adopt treatment C on the grounds that it is medically contra ‑ indicated or for some other reason is a treatment which they could not conscientiously administer.

The court or parents for their part can refuse to consent to treatment A or B or both, but cannot insist on treatment C. The inevitable and desirable result is that choice of treatment is in some measure a joint decision of the doctors and the court or parents.

Welfare Distinction European and BHSG Guidelines on whether best interests a narrowly medical test or wider one

Children Act 1989, s.1 (1) When a court determines any question with respect to— (a) the upbringing of a child… the child’s welfare shall be the court’s paramount consideration.

J v C [1970] AC 668, per Lord MacDermott 710 “I think they connote a process whereby, when all the relevant facts, relationships, claims and wishes of parents, risks, choices and other circumstances are taken into account and weighed, the course to be followed will be that which is most in the interests of the child's welfare.”

Welfare checklist (Children Act 1989, s1(3) … a court shall have regard in particular to— (a) the ascertainable wishes and feelings of the child concerned (considered in the light of his age and understanding); (b) his physical, emotional and educational needs; (c) the likely effect on him of any change in his circumstances;

(d) his age, sex, background and any characteristics of his which the court considers relevant; (e) any harm which he has suffered or is at risk of suffering; (f) how capable each of his parents, and any other person in relation to whom the court considers the question to be relevant, is of meeting his needs; (g) [the range of powers available]

Re MB [2006] para 16 ‘Best interests are used in the widest sense and include every kind of consideration capable of impacting on the decision. These include, non- exhaustively, medical, emotional, sensory (pleasure pain and suffering) and instinctive (the human instinct to survive) considerations.

Legal Principles 2 Children’s autonomy rights –Gillick and since Children’s participation rights –Article 12 UN Convention on the Rights of the Child 1989 Guidance assumes value of preserving autonomy to be exercised in future How important is autonomy in law?

Retreat from Gillick Donaldson as denying autonomy and reinforcing welfare –Consent but not refusal –Tail wagging dog problem –Fragility – dependence on competence –Weakness – liable to be overridden by parents or court Re R [1991] 4 All ER 177 Re W [1992] 4 All ER 627

Child’s competence –Re R: Fluctuation –Re W: impaired competence Concurrent consents (Re W) –Parental control or medicalisation? Supervisory jurisdiction of the court –Welfare principle

Reaffirmation of Children’s Rights? Axon [2006] EWHC 37 (Admin) Parents not entitled to be informed about family planning advice and treatment (including abortion) Firmly based on Gillick

A Battle Won? Axon did not consider the Donaldson cases It turned on an interpretation of a key paragraph in Gillick that Donaldson had specifically rejected Arguably inconsistent with the CA decisions Is only the decision of one High Court judge

Consistency in Law?

Human Tissue Act 2004 Research on tissue (human cells other than hair, nail, embryos) Children with their consent (s 2) –Parental consent only if incompetent or have not taken a decision –Public display & anatomical examination only with written witnessed consent of child

Data Protection (Subject Access Modification) (Health) Order parents can normally seek information child may veto access –Where they are able to appreciate the nature of the application for access Not bound to allow the parents access if it would cause serious harm to the physical or mental health or condition of the child Access cannot be given to any part of the record that would disclose information provided by a child in the expectation that it would not be disclosed to the applicant

The Medicines for Human Use (Clinical Trials) Regulations 2004 Parental interview and consent –Objectives, risks, inconveniences –Represent child’s ‘presumed will’ (para 13) Child to be informed Child’s objection to be ‘considered’ by investigator NB ‘adult’ here is 16 years and above SI 2004 No 1031 Schedule 1, Children Part 4

Convention on Human Rights and Biomedicine Additional protection of those unable to consent (art 17(1)) –results of research potential real and direct benefit to subject –research cannot effectively be carried out on individuals capable of giving consent –proxy consent –no objection

Convention on Human Rights and Biomedicine Exceptionally, research on those not competent to consent and not directly benefiting (art 19(2)) –indirect benefit to person of others in same category –only minimal risk and minimal burden

Some Models

Modelling the dispute: family privacy? Child Parent Doctor (State?)

Modelling the dispute: agency Child Parent Doctor

Modelling the dispute: conflict Child Parent Doctor

Modelling the dispute: property Child Parent Doctor (State?)