Attention Shoppers: Special Today -- Iceland's DNA
by Jeffrey P. Kahn, Ph.D., M.P.H.
Director, Center for Bioethics
University of Minnesota
What is the value of the genetic past, present and future of the population of an entire country? It's hard to fix a fair selling price for the kinds of information that come with exclusive access to a population's DNA, but a company called Decode negotiated the right to Iceland's genome for $200 million.
Because the vast majority of Icelanders share a small group of common ancestors who lived thousands of years ago, they represent a very interesting research population. Individual genetic variations are easily researched because they stand out from an otherwise homogeneous gene pool, and such variations are important for unraveling the often complex genetic causes of disease. Decode's CEO, a former Harvard Medical School professor who returned to his native Iceland, recognized the unique genetic value of his homeland's population and bought access to it at what seems like a bargain basement price.Selling the right to mine for genetic secrets
But should a country sell its people's genetic information? And if so, who has the right to buy it, and under what terms? Selling exclusive rights to a single corporation sets up the possibility for both exploitation of whatever information comes from the research, and for control over access to the benefits it may yield. It is ironic that such exclusive licensing deals make the quintessentially public resource into a private commodity, and may end up denying access to its benefits to the very individuals whose DNA make discoveries possible.Turning consent on its head
For the database to be useful, DNA from nearly the entire population must be included. Under American research rules, that would mean every individual would need to give their consent -- a practical impossibility. The Icelandic approach flipped the presumption, by including individuals in the database unless they object. The burden falls to individuals to opt out of what is effectively research without consent.
While some commentators have pointed out that Icelanders and Americans may think differently about research and consent, a basic and universal reason for requiring consent is the protection of individuals. Do we need to worry about protections in the kind of large population-based genetic research that Decode is undertaking? While harms or denial of benefits to the public don't necessarily follow, corporate interests may not parallel those of individuals or groups whose data they "own," and it isn't clear who or what will protect the rights and interests of DNA "donors."
Population research, personal risk
Even if research done on large databases never identifies individuals whose DNA is used, there is risk in research on identified populations. Suppose that Decode's research identifies a genetic mutation that increases the risk of a disease like schizophrenia in the genes of some or many Icelanders. It will be tempting to draw the generalization that people of Icelandic heritage are genetically predisposed to schizophrenia -- but it will also be wrong. Just because a mutation is discovered in a particular group doesn't mean its members are more likely to get the disease than anyone else; only that science found "their" mutation first. Therefore, an important risk to individuals who belong to the study group is being labeled "at risk" for certain diseases, with potential consequences for insurance, employment and other discrimination.
The power of genetic research on large populations such as Iceland's is impressive, and more will be carried out on other groups isolated by geography, cultural heritage, family lineage, and as yet unimagined categories. The value of such research is the knowledge it yields for individuals, groups and societies who can benefit from it. But knowledge can be harmful if applied carelessly, and will be worthless unless it is shared. Now is the time to consider how we ought to think about the sale of genomes, so that we do our best to realize the potential benefits of genetic research, without suffering its pitfalls.
"Ethics Matters" Archive
where you'll find other columns from Jeffrey Kahn
on a wide range of bioethics topics.
Center for Bioethics and CNN Interactive.
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