Delegates at the International Conference on Birth Defects and Disabilities in the developing World have called for the establishment of a Medical Genetics Advisory Board to ensure that human rights are respected as genetic testing and counseling becomes available.
Since the blue print for the human genome was published in February this year, the ethical and social implications of human genetical science have taken the front stage. Of chief concern is that the promised benefits of knowledge gained are balanced against issues of fairness, justice and human rights.
Many delegates and speakers at the conference expressed concern that people in the developing world would be exploited as a cheap gene pool by the “big gene hunters” in the developed world. They wondered whether poor nations would be forced to pay high prices for genetic therapies as they do for AIDS drugs and whether the development genetic science would see a widening of the gap between rich and poor nations.
The Medical Research Council has put genomic studies in its top six priorities along with AIDS and TB as local researchers and health workers try to get to grips with the ethical issues around genetic services. At the start of the conference the Health Department launched guidelines on genetic disorders and birth defects but there is no body to oversee the quality and efficiency of many genetic tests that will soon be available in South Africa.
The conference heard that come doctors in South Africa are already offering genetic tests to screen for Alzheimer’s Disease, although these tests are not proven. If tests like these are not properly monitored and proven, people will be exploited when thousands of them become available.
Marylyn Christianson, a teacher at the Wits School of Law drew attention to how genetic information could be used and abused. She said human dignity was the fundamental value that should be applied when dealing with genetic information. “South Africa has learned much from HIV which has highlighted the need to respect a persons right to dignity and equality,” she said.