Rights, responsibilities and reason

The debate surrounding a Waikato family's decision to give their severely disabled daughter Charley a growth-attenuating hormone has been understandable.

After all, there are many issues in the mix: health and safety, care and protection, rights and responsibilities, dignity and worth, morals and ethics, law and order.

The case has only come to light now the treatment has ended, as parents Mark and Jen Hooper reportedly knew it would be controversial and admitted they did not want anything to impede it.

The Care of Children Act allows parents or guardians to consent to a child's treatment if ''necessary'', but an ethics committee had failed to reach a unanimous decision about the hormone treatment in this case - designed to stunt Charley's growth and make it easier for her family to physically care for her.

The Hoopers then took her to South Korea to start the treatment, which included removing her uterus.

(Charley is now 10, and will not grow beyond her current height of 1.3m tall and about 24kg.)

It is a highly emotive topic.

Few people aware of the family's situation can fail to be moved by it.

Charley is severely disabled, with fewer abilities and prospects than a newborn.

She is blind, cannot talk, does not recognise her family, and was having constant seizures.

Her parents feared she would become largely bedbound because of the difficulties moving her as she grew.

Advocates such as the IHC and Disability Rights Commissioner Paul Gibson believe the medical procedure is unnecessary, however, and inconsistent with the United Nations Convention on the Rights of Persons with Disabilities.

Rights and freedoms are fundamental values for New Zealanders, and protocols to safeguard against the abuse and discrimination of our most vulnerable citizens are crucial.

The issues at play here are similar in many ways to those in the right-to-die debate - and regarding our current laws around abortion.

They are complex, and often involve competing ideas about rights and wellbeing.

In this case, it appears there are conflicts between the UN convention and the Care of Children Act.

New Zealand is a signatory to the international convention, so has state obligations under it.

The ''difficulty'' with applying the articles of the convention at an individual level, however, is that no account is taken of levels of disability.

Some of the general principles are indisputably important (''equality'', ''respect for inherent dignity'', ''respect for difference'' and ''non-discrimination'') but some would be impossible to apply to Charley purely because of her circumstances.

These include ''respect for individual autonomy'', ''freedom to make one's own choices'', ''independence'' and encouraging ''full and effective participation and inclusion in society''.

Many would argue the treatment will give Charley better ''opportunities'' and her ''best interests'' have been the ''primary consideration''.

The controversy is likely to be around this clause: ''No one shall be subjected to torture or to cruel, inhumane or degrading treatment or punishment. In particular, no one shall be subjected without his or her free consent to medical or scientific experimentation.''

It appears the Hoopers acted within our legislation - although the legality of defying the ethics ruling is unclear.

It may be the case that better clarity between the protocols is required, and any decision about discretion might be best done in a court of law - for the protection of all those involved.

Society is often quick to judge, but not as ready to offer support.

If we all walked a mile in this family's shoes we might be better informed of the realities.

Any examination of legislation should consider the current financial, physical and psychological support networks in place for people with disabilities and their families - and the resourcing of these.

And if there are changes made in the ongoing debate over rights and the burden of responsibility, it is to be hoped reason will prevail.

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