SUBMISSION ON CHILDREN’S BILL B70/2003

ON BEHALF OF THE HIV/AIDS Vaccines Ethics Group (HAVEG)

Background

The HIV/AIDS Vaccines Ethics Group, based at the University of KwaZulu-Natal, Pietermaritzburg, aims to facilitate ethically sounds HIV vaccine trials in South Africa. Much recent debate around children and HIV vaccine research has focused on the need for guidelines to facilitate children’s right to participate in, and thereby benefit from HIV vaccine research, while simultaneously protecting child research participants from exploitation and harm. HAVEG’s submission on the Children’s Bill, therefore, is based on those provisions which may impact on the rights of children as trial participants in HIV vaccine research. While most of the more relevant provisions are contained in the s76 Bill, there are nevertheless some important principles which we wish to comment on in this Bill:

Chapter 2: General Principles

Informing parents / children of actions & decisions taken in a matter concerning a child

Section 5(6) of the Bill provides that:

"A person who has parental responsibilities and rights in respect of a child and the child, where this is appropriate having regard to the age, maturity and stage of development of the child, must be informed of any action or decision taken in a matter concerning the child which significantly affects the child."

While appreciating the broader importance of this provision, we would argue that it fails to recognise the fact that in some instances the Children’s Bill recognises the competence of children to act independently of their parent/s or guardian/s. For instance, s135(2) of the combined Children’s Bill allows children of 12 years old and with sufficient maturity and mental capacity to appreciate the matter, to consent independently of their parents to medical treatment. Similarly, s136(2) allows a child of 12 years old, or a child under 12 years of age with sufficient maturity to appreciate the matter, to consent independently of a parent or guardian to an HIV test. The protection of a child’s confidentiality with regard to his or her medical treatment, general health status and HIV status may be of utmost importance in encouraging children to access health services, and to participate in research.

We would therefore recommend that the section be redrafted to provide for instances where a child alone, having regard to age, maturity and stage of development, must be informed of any action or decision taken in a matter concerning the child which significantly affects the child.

Best Interests of the Child Standard

Section 6(1) provides for a number of factors to be taken into consideration:

"Whenever a provision of this Act requires the best interest of the child standard to be applied".

The National Health Bill (soon to be Act 61 of 2003) also applies the ‘best interests of the child’ standard, in its provisions relating to therapeutic research on a minor, and it may well be that other legislation making mention of children’s rights will refer to the standard in the future. For this reason, we recommend that the drafters of the Bill consider providing for a list of factors that can be applied broadly, across various pieces of legislation.

At the moment, the factors listed in s6(1)(a) – (l) appear to be mostly directed at the issues arising where the best interests of an individual child are being considered for purposes of determining custody or otherwise placing a child. We would urge that these factors be broadened to enable them to be applied to a class of children (eg children participating in an HIV vaccine trial) as opposed to an individual child. We would furthermore like to suggest the inclusion of additional factors to facilitate decision-making, such as:

Chapter 3: Children’s Rights

Information on Health Care

Section 13 provides that every child is entitled to confidentiality with regard to his or her health status:

"except when maintaining such confidentiality is not in the best interest of the child"

We are concerned that children would be discouraged from accessing vital public health services or participating in research, where their right to confidentiality could be breached on the basis described in this section. Our law contains existing provisions regarding when a person’s right to confidentiality may be limited, and we submit that the ‘best interests of the child’ standard should operate in addition to those existing provisions, rather than supplanting them.

 

 

For further information on any of these submissions kindly contact:

Ms Catherine Slack, Co-ordinator, HIV/AIDS Ethics Group, ph: 033 2606166 or slackca@ukzn.ac.za

Ms Kitty Grant, Consultant, HIV/AIDS Vaccines Ethics Group, ph: 011 4425298 or kittyb@mweb.co.za