1.  Hon. Members, Health and welfare is a basic right which includes the individuals with genetic disorders or birth defects.
2. Furthermore, section 27 part 2 of our Constitution guarantees everyone the right of access to health and welfare services with the onus on the State to take reasonable legislative and other measures within its available resources, to achieve progressive realisation of each of these rights. We honourable members need to be judicious in budgeting in order to have positive health outcomes. In the private sector outputs are measured as per inputs, not in the public sector where outcomes are the intended impacts of outputs. Therefore line items in programmes are important and we must monitor and evaluate these.
3. As a signatory to the United Nations Convention on the Rights of the Child (CRC), we are obliged to provide services for disabled children such as prevention and promotive health programmes for mental health and care of challenged individuals. HON Members where is genetic services budgeted for specifically?
4. This debate focuses on genetics services because we need to ensure that they live and reproduce as normally and responsibly as possible. The emphasis should be on inherited (congenital) and structural (non-genetic) birth disorders.
5. There a few geneticists, genetic counsellors laboratory scientists in South Africa. Data is scarce, maybe 8, mostly in the private sector. The increasing demand for genetic testing cannot be met unless the required training is provided at under and postgraduate level at medical schools.
6. To deliver a comprehensive genetic service equitably to all South Africans, a considerable revision of clinical and laboratory staffing will be required. The United Kingdom report on “Clinical Genetics Services into the 21st Century” (1996) recommends that two full-time clinical geneticists are required per 1 000 000 of the population. Using these criteria, about ±100 clinical geneticists would be required in South Africa.
7. Therefore priority medical genetic services should be budgeted for firstly, prior to conception, b) during pregnancy, c) at birth, d) in infancy and childhood and e) in adolescence and adulthood.
8. The key aspects on services should be, creating an awareness of medical conditions in women of reproductive age and individuals and families at high risk for genetic disorders and birth defects; services during pregnancy should include genetic counselling, pre-natal diagnosis and the option of termination of pregnancy and ante natal care; services at birth must target the mother and physical examinations of the neonate for genetic disorders and birth defects, physical examination and investigation of the stillborn baby, parental referral for genetic counselling and patient referral for medical care; services in infancy and childhood focuses on encouragement of attendance at well-baby clinics, monitoring of growth and development, identification of late-onset genetic disorders and birth defects and referral for appropriate care and genetic counselling; in adolescence ascertainment of genetic risk based on family history, screening of high-risk populations and referral for appropriate care and genetic counselling.
9. With the bulk of the budget allocation for primary health care services, genetic screening is done by nursing staff who have extensive experience in genetic counselling but there are no formal designated nurse counsellor posts.
10. Hon Members, the Minority Front calls for genetic services to be a separate budget programme and I hope we can get additional funding for this, Hon MEC of Finance?

Thank You.

Shameen Thakur-Rajbansi

Minority Front  MPL KZN Legislature