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

Shaping tomorrow’s thinking

Testing of ChildrenLegal 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 402

1. 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?)

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

Documents

gillick slide

ingrid slide

court welfare principle

parental control slide

high court judge slide

scope of choice slide

childrens welfare

parents access