Geneticists taking part in debate being held today at the British Society of Human Genetics (BSHG) annual conference in York will voice concerns over conflicts of interest emerging around the creation of human DNA databases. However, they will also highlight the importance of guaranteeing public confidence to help ensure that opportunities for major health benefits from research using medical DNA databases are not lost.
Several large-scale collections of DNA samples exist as powerful research tools in the hunt for genes linked to some of the most widespread diseases of our time, including cancer, diabetes and stroke. Equally they are a potential goldmine for biotech and pharmaceutical companies engaged in the development of new drugs and genetic testing technologies. DNA databases that were originally developed as part of publicly funded research studies, or routinely collected in hospitals, have acquired a new and significant commercial value, inviting opportunities for exploitation.
Professor Marcus Pembrey, Emeritus Professor of Paediatric Genetics at the Institute of Child Health in London, said: 'The most valuable long-term projects for common disease research include DNA banks for genetic studies. As a result, the financier of any such study is under enormous pressure to allow other researchers to bypass the local research team in the scramble to exploit data for studies using the latest DNA genotyping technology. Such impositions risk undermining the high level of trust commanded between the study participants and the local research team and, if not handled carefully, breaches of participant anonymity'.
Professor Pembrey stressed that it is imperative that proper safeguards are in place, so that the potential for genuine benefits to human health raised by this research are not hampered by fears over privacy. There are also concerns that pressure could increase for studies using medical databases to ramp up their output by feeding back data to participants about their genetic risk status for the latest gene discoveries. But, says Professor Pembrey: 'In the absence of clinical services to deliver such information, we cannot allow this to happen'.