Re: Testing children at their request without parental consent?

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Dear FORUM,

Re: /message/7741

Thank you to Anil Paranjape who raises the important question about the testing

of children.

South Africa faces similar quandaries on the HIV-testing of children. A related

question follows below from the the Southern African HIV Clinicians Society's

" HIV Policy and Ethics discussion forum " . I copy the Case Study and the

Conclusion that pertain to infant testing of mothers suspected to have HIV but

who refuse to test

(the evolution of the debate can be accessed at

http://groups.google.com/group/policy-ethics/topics?start=10 & hl=en-GB & sa=N

Case Study 5: HIV-testing and ARV prophylaxis to newborn without the mother's

consent

A 59 year old paediatrician is called to the nursery ward of a government

hospital to see a male infant born eight hours ago. The child's mother is 33

years, wasted and has oral thrush. This is her second child, the first died in

infancy after a short illness, which has a history typical of pneumonia.

The mother was not offered an HIV test during pregnancy as the clinic she

attended does not have such services. A nurse had called the paediatrician as

her offer of HIV testing had been declined. She requests the doctor to convince

the woman to test, given the benefits such knowledge gives the mother, as well

as to enable the provision of post-exposure prophylaxis for the newborn and of

infant feeding counselling. The doctor examines the newborn, who is vigorous,

fully grown for age and has no signs of HIV infection. She then explains the

benefits and potential harms of testing,

but still the woman declines testing.

The paediatrician is aware of the efficacy of antiretroviral (ARV)

prophylaxis given to HIV-exposed newborns whose mothers did not receive ARVs.

Her informed conscience and felt duty to act in the best interests of her

patient (the child), has to be balanced with hospital, and indeed, international

policies which infer that newborns cannot be tested for HIV exposure and be

given prophylaxis without their mothers' consent. She thinks of many others in

history who, in similar situations acted from their conscience, even if such

actions were contrary to prevailing policies. She tests the child, who rapid

tests show is HIV-exposed. The doctor provides ARV prophylaxis, informs the

mother of her status and ensures she is

enrolled in an HIV clinic which provides ART.

1) Is there something more the doctor could have done to persuade the mother

to test the baby? Would it have helped if the doctor offered an HIV-test to the

mother at the same time?

2) Was the doctor correct to have tested the child without the mother's

consent? (what, in your opinion, is the balance that needs to be struck between

a mother's right to autonomy and choice, and the baby's access to health care

services?)

3) To what degree does it complicate the situation that the baby's

HIV-status is a proxy for the mother's status? Would you answer to 2 have been

different if the baby had urgently to be tested for Down's syndrome (i.e. a

condition that does not infer anything about the mother's state of health)?

4) Was the doctor correct to provide ARV prophylaxis to the baby without

consulting the mother? Should the doctor tell the mother that she had given the

baby ARV prophylaxis?

5) If the mother were consulted, and she explicitly refused, should the doctor

have proceeded with administering ARV prophylaxis to the child in any event?

*Evidence side note:*

A trial in Malawi and in South Africa showed that ARV prophylaxis given to

newborns whose mothers did not receive ARV drugs is highly efficacious, similar

to single-dose (maternal and infant) nevirapine. It is not known which component

(or both) of the single-dose (maternal and infant) nevirapine regimen results in

the 50% reduction in transmission risk.

One of the legal tenets which should inform this case is the Child Care Act,

built on the Convention Right of Child, to which almost all countries are

signatories, it states: 'In all actions concerning children, whether undertaken

by public or private social welfare institutions, courts of law administrative

authorities or legislative bodies, the best interests of the

child shall be a primary consideration.'

*An Ethical and Rights-based approach* (submitted by Chersich)

A woman's constitutional rights to privacy, reproductive choice and bodily

autonomy are all too often violated and need protection. Also, in common

practice, it is a woman's right (and legal obligation) to make choices for her

child. However, HIV infection in infants and consequent personal and public

health suffering, are essentially preventable. In such circumstances, rights are

competing and need to be weighed. Dedicated efforts, which are

culturally-appropriate and ideally communicated in the woman's first-language,

are needed to explore and address the underlying reasons she declined

HIV-testing.

Provided confidentially is assured, it is difficult to construct a reason for

not testing the child when the mother refuses, that

is more compelling than an HIV-free child. That does not discount the fear of

knowing one is HIV infected, nor ignore the potential risks for violence

following disclosure of HIV-status to one's partner.

Mandatory testing of newborns where treatment is available could signify the

beginning of a slippery slope, eroding the right to refuse testing in situations

such as during pregnancy, post-rape, pre-marriage, post-occupational injury,

even perhaps in the general population. By itself a desire not to engage in a

slipper slope argument is an inadequate rationale for avoiding the explicit

weighing of the child's interests (identifying exposure and receiving

antiretroviral post-exposure prophylaxis) with a woman's right to autonomy and

not to know her own HIV-status.

As with balancing ethical and rights considerations, legislation (National

Health Act), policy (National Policy on Testing) and Guidelines (HPC Guidelines

on the " Management of Patients with HIV " ) that stress informed consent need to

be balanced with the South African Bill of Rights s28 (2) (the highest law in

the country) which states: " A child's best interests are of paramount

importance in every matter concerning the child. "

The Constitution has been used to inform similar circumstances, such as where

Jehovah Witnesses decline a blood transfusion for their child. (VvV 1998(4) SA

169 ©)

When can health workers decide what is best for the child, or is this the domain

of the courts? Perhaps with more vigorous intervention, based on established

public health principles, this epidemic could be reversed, at least among the

children. Where access to HIV treatment is assured, the degree and range of

benefits of an early HIV diagnosis differ markedly from those of a late

diagnosis when HIV inevitably declares itself with severe diseases. Perhaps, for

too long health workers have protected people from facing an inevitable

diagnosis, rather than protecting people's health and that of their children. We

can never turn back the clock, but we can change the speed of its ticking.

Several US states have successfully implemented mandatory testing of

newborns for almost a decade and have, provided proof of concept and

encouraging safety data, and this in itself should justify further

investigation in a South African context. The state must assume ultimate

responsibility for protecting the child's health and wellbeing, and should

intervene when these are undermined. Another argument worth considering is the

validity of a child's argument that, by not testing them for HIV exposure at

birth, their health providers who cared for them around childbirth neglected to

protect them from HIV infection and did not act in their best interests, as

obliged under international and domestic law.

Overall, legal action may effect policy change, though must never negate or

minimize the real difficulties women face in this epidemic and their needs for

care and support.

Legal Implications (submitted by Marlise Richter)

The legal ramifications for this Case Study are essentially three-fold:

FIRST:

a) Any invasive medical treatment or test without the patient's consent (and in

this instance that of the legal guardian of the infant – her mother) constitutes

an assault under South African common law as well as an invasion of personality

rights.

It therefore follows that the mother could lay a charge of assault on behalf

of her child against the doctor who tested the infant and provided medical

treatment to the infant without the mother's consent.

c) The mother will also be in a position to report the doctor the Health

Professions Council of South Africa (HPCSA) for unethical conduct.

SECOND:

It is however unlikely that the course of action described above would succeed

in court. In her defence, the doctor would be able to argue that the court is

under a constitutional obligation to develop the common law so as to " promote

the spirit, purport and objects of the Bill of Rights " (section 39(2) of the

Constitution).

The Bill of Rights explicitly provides that " A child's best interests are of

paramount importance in every matter concerning the child " (section 28(2) of the

Constitution).

The available medical evidence shows that it is not in the best interests of the

child to be at risk of contracting HIV from the mother, and that providing

HIV-testing and PEP would reduce the risk of the child contracting a chronic and

potentially life-threatening illness.

THIRD:

The doctor could therefore argue that the courts are constitutionally

obliged to develop the common law of assault to exclude instances of

beneficent intervention in the interests of a minor.

On this approach it is likely that the doctor would be acquitted of a

charge of assault.

And the Health Professions Council would probably make a similar finding.

Marlise Richter

e-mail: <marlise.richter@...>

Cross posted from [HIVtesting_policy]