deCODE Genetics have collected enough genetic material to warn Icelanders of genetic health risks, reports the New Scientist, but privacy concerns remain.
“We have insights into all living, and some dead, Icelanders,” said Kári Stefánsson of deCODE Genetics, as he presented the company’s latest research from its epic national sequencing programme this week. “At the push of a button, we could find all the women with mutations in the BRCA2 breast cancer gene.”
Among the new insights from the latest research are a new gene linked with Alzheimer’s disease and Kári’s belief that deCODE has now accumulated so much data about Icelanders that it is time to debate how this might be used to identify people at risk of developing genetic disease.
For example, women with the BRCA genes could be forewarned of their increased risk of breast and ovarian cancer. “Currently, our information is used solely to make discoveries, but now we’re in the position to use it to improve health,” Kári told New Scientist. “For us, it’s a watershed. We’re in a position to teach the rest of the world how to handle these opportunities.”
So far, Iceland has resisted using deCODE’s genetic data like this and last year there was even some backlash when deCODE held a campaign to collect DNA samples from 100.000 Icelanders in exchange for t-shirts.
Although safeguards were built into the collection of data to guarantee that all the information would be encrypted and kept anonymous, with no information on potential disease risks fed back to patients, this could now change.
deCODE would not decrypt the data they have collected but pass it along to the Icelandic healthcare system who would then de-anonymise it and alert Icelanders of potential genetic health risks – provided they wished to know.
“We and the Icelandic Medical School and the Ministry of Health, have been discussing how to use the data in the best way,” said Kári. “We’re also involving the university’s institute of ethics, because we really want to do this the right way.”
Despite advances, critics remain suspicious of deCODE’s efforts, and doubtful about how many of its discoveries will lead to new treatments.
Past controversies include conducting studies with educational data and genealogical records of subjects without their consent, and going to court in 2003 for using medical data while operating under “presumed consent.”
“It very much remains to be seen whether information gleaned from mining genetic databases will lead to improved risk assessments of common complex diseases, let alone to clinical applications,” said Marcy Darnovsky of the Center for Genetics and Society in Berkeley, California. She also said it’s important that controversies of deCODE’s history weren’t “swept under the rug.”