On 20-23 March the African Human Genome Initiative hosted an international conference at the Spier Wine Estate for nearly 400 people. The Africa Human Genome Initiative was initiated by three organisations, namely the Academy of Sciences of Southern Africa, Human Sciences Research Council and the Sustainability Institute. The partnering of the Sustainability Institute with the two institutions that bring together the mainstream natural and social sciences reflects the emerging significance of the sustainability agenda in contemporary research circles. Below is a newspaper article that covers some of the debates that took place at the conference:
Ethics of genetics under scrutiny at genome conference
by Jennifer Crocker
The Africa Human Genome conference, which ended on Saturday night, brought together scientists, archaeologists and other specialists from Africa and the rest of the world.
According to Professor Wilmot James the conference aimed to bring together a broad range of scholarly expertise to reflect together how genomics (the sequencing of the human genome) could bring benefit to human progress in Africa..
It also aimed at reaching a better understanding of the ways in which modern human beings happened to emerge from this continent to populate the world; how to, sharpen our ethical and legal antennas to guard against human exploitation and the general potential for unprecedented violations of privacy; and how to share the insights and lessons learnt with our children and the broader public”.
One of the areas that received much attention was the possibility of creating a vaccine against HIV using the knowledge gained by the sequencing of the human genome.
This at a time when the first vaccine to go to Phase 3 clinical trials had shown no effect, according to Professor Hoosen Coovadia of Natal University. Coovadia said that it was a measure of the desperation around the pandemic that lead Nobel Laureate David Baltimore to suggest that it might be necessary to consider changing some of our genetic material to fight the virus.
Professor Carolyn Williamson of the University of Cape Town said that the design and development of a vaccination against HIV was going to take a long time. Part of the problem in developing a conventional vaccine is that rate at which the HI virus mutates and recombines.
This is further aggravated by the fact that the HI virus actually becomes part of human sells. “So,” she said we need to find something that will stop the virus from entering human cells.”
But she said that UCT should be able to begin phase one clinical trials on a vaccine for the Sub-Type C strain of HIV, which is most prevalent in southern Africa, by 2004. However she stressed that the length of time that it would take to find a vaccine meant that preventative strategies and treatment were paramount to containing the pandemic.
David Bourne of UCT’s School of Public Health said in his presentation at the conference that the South African government had to reconsider its position on anti-retrovirals drugs or else the disease would run rampant in the coming years.
“By 2010 the life expectancy of a South African will drop from 63 to 40… and five to seven million people will be dying from Aids every year,” he said. “This is the most severe epidemic ever to effect mankind.”
He also said that 92 percent of the world’s Aids orphans would be in sub-Saharan Africa. “By far the most cost-effective way to deal with the impact on Aids orphans would be to keep their parents alive longer,” he said.
Delegates at the conference also focussed on the ethical dilemmas around testing and the disparity between money dedicated to HIV/Aids research in the developing world and the developed world. In order for research to be ethical, it was essential that the communities used in trials should be told exactly what the research was for and should be given free drugs should they become ill during trials.
There was a necessity, a number of speakers and delegates agreed for community values to be taken into account during testing. A new code of practice had to be found to accommodate those communities who see their blood and DNA as inherent parts of themselves.
Most importantly when discoveries were made following trials in the developing world these needed to be filtered back to the communities who had contributed to the trials. Justice Albie Sachs of the Constitutional Court told the conference about how at a Unesco meeting in Paris there had been a loud noise as a person insisted on talking to the lawyers and scientists gathered.
He turned out to be a Native American who wanted to plead for active consultation and buy-in from communities. “We are not just protein waiting to be tested. We have our own system of beliefs and knowledge.”
This Sachs said had given him cause to reflect on the essential nature of ethical testing. He said that the biggest moral victory was the announcement that the sequence of the human genome belonged to all people, and should never be the property of one group or business.
This was a great victory which allowed developing nations to participate in research without having to pay royalties and to make contributions to the project. Sachs said that Africa had a long history of having people stolen from it by slavery and that it was essential that in using people from Africa for sampling or testing the principles of dignity and dialogue be constantly applied and tested.
At all times the danger of creating a genetic superclass, or a genetic underclass needed to be guarded against. “What we don’t need is a form of genetic apartheid,” said Sachs.
(Reproduced with permission: The Cape Times)