Consolidating genetic data

Consolidating genetic data

Leading Edge Consolidating genetic data The long-running controversy about free access to genetic data came one step closer to ending last month with...

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Leading Edge

Consolidating genetic data The long-running controversy about free access to genetic data came one step closer to ending last month with the announcement by Celera Genomics, Rockville, MD, USA, that from July 1, 2005, the human genome data it once sold will be made available in the public databases of the US National Center for Biotechnology Information (NCBI)—once its major competitor. Much of Celera’s human data duplicates what is already available through the NCBI, so the move will not provide scientists with much new information on the human genome, but it will help to validate existing data. Perhaps most importantly though, the move clearly signals that, at last, commercialisation of genetic information is no longer perceived as acceptable. The completion of the human genome sequence in April, 2003, opened numerous doors into medical research, providing a reference against which to compare the abnormalities that characterise diseases. Research now abounds into identifying genetic and epigenetic factors associated with disease development, progression, and prognosis, and with response to treatment. However, with so many developments from all parts of the world, keeping track of the data has become extremely difficult, and concerted efforts are now needed to consolidate and validate this vast resource. The combining of the two major genome databanks is a good start, but the nature of this information makes it difficult to directly translate it to the clinic. Far more valuable would be disease-specific genomic sequences that are accompanied by individual patient information— ie, a cancer registry that also includes relevant and comprehensive genetic data. Such resources would allow much more thorough epidemiological analyses, opening up the potential to identify the molecular and genetic changes leading to cancer development or response to treatment and to design agents to combat these changes. In recognition of this need, on May 9, 2005, the International Myeloma Foundation launched the latest phase of its “Bank on a Cure” project—the first myelomaspecific DNA bank combined with a strategic plan to translate DNA information into a cure for multiple myeloma. This initiative is commendable in its comprehensiveness and foresight. Yet, such databases inevitably duplicate information from cancer and hospital Vol 6 June 2005

registries. Rather than creating new sources of data, a more pragmatic approach would be to link new data with existing data, thereby expanding the scope and potential applications, decreasing duplication and cost, and allowing for future expansion as new techniques and data come to light. Furthermore, such databases would ideally be linked to those of other diseases since it is becoming increasingly clear that many diseases are inter-related at fundamental levels. Research on individualised disease characteristics and treatment is hindered worldwide by a multitude of issues. Often, researchers cannot get access to the information they need because of very strict regulations for patient consent and confidentiality. Patients can also be reluctant to provide genetic information for fear of discrimination. Furthermore, the techniques used to analyse the data differ widely, are evolving quickly, and have varying levels of sensitivity, specificity, and validation, making comparison and interpretation difficult. Perhaps the time has come for a central international agency to help coordinate the huge volumes of data; ensuring that new information is used to validate rather than duplicate existing data; providing efficient links between the multitude of different databanks, facilitating access to all who have a genuine need for it; and increasing awareness among the various stakeholders of each others’ data collections and where formalised links could be established. As part of this process, patient consent forms would need to maintain a strict ethical code for use of the data provided, while permitting multiple use of data under appropriate conditions, meaning that researchers can build on existing information rather than wasting resources starting again from first principles. WHO would be an obvious choice of organisation to instigate this central agency, with the appropriate authority both nationally and internationally. DNA databases have the potential to provide very important information for cancer research and treatment; however, without appropriate consideration for the future, their applicability will be limited. It is essential that steps are now taken to ensure effective collaboration between all relevant stakeholders so that research can continue to advance without impeding its own progress. ■ The Lancet Oncology