From Mr G. Cardona

We are greatly concerned about the lack of legislation on bioethics in our country. As disabled people, we feel that that there are shortcomings in our laws regulating procedures such as IVF that could lead to abuse and violation of the human rights of disabled people.

We stress the importance of recognising that the lives of disabled people must not be valued by the severity or otherwise of their impairment, and that they should never be denied equal provision of medical care and intervention. In order to ensure that disabled people are not discriminated against, we should make sure that they are represented on boards involved in decision and policy-making. Moreover, people working in health care should be given disability equality training in order to better cater for disabled people when providing health care.

Genetic screening, or any procedure that may be implemented in the future, should not misrepresent disability and parents should not be pressured to give up their child because of impairment.

We believe that every child should be given an equal chance to life. However, if no legal action is taken to regulate procedures that will have repercussions on the life of disabled people, we fear that the disabled will not be given any chance whatsoever because of their impairment.

No regulation would mean that at any stage of their life, disabled people are literally at the mercy of decision-makers (be they medical or health care professionals) who will have the power to decide on their life.

We feel that policy-makers should ensure that disabled people are given equal representation and that their rights are protected in light of the human rights charter.

Gordon C. Cardona

For the Maltese Council of Disabled Persons