This is a guest post from Susan K Finston, President of Finston Consulting. Do you have a response to Susan’s post? Respond in the comments section below.
Once again we have reached the dog-days of summer in Washington DC, when it is nice to day-dream about biotechnology in cooler climates. There may be no better destination for a biotech busman’s holiday than Iceland. (For anyone keeping score, this series also has touched on biotech trends in India, Ireland, Israel (twice) and Italy.)
These days Iceland’s biotechnology sector is enjoying the limelight as one of the ‘Country Spotlights’ in the 2014 Scientific American Worldview on biotechnology released last month at the annual Biotechnology Industry Organization (BIO) Convention in San Diego. The 2014 Worldview highlights the success of Icelandic biotechnology company Sif Cosmetics, which has developed a barley-based cosmetic with anti-aging skin cream, called BIOEFFECT.
Beyond cosmeceuticals, Iceland’s small and genetically homogenous population provides an unique laboratory for identification and isolation of genetic mutations associated with cancer, heart disease and other common diseases. DeCode Genetics has capitalized on Iceland’s genetic heritage dating back to the time of the Vikings 1,000 years ago and has assembled genotypic and related medical data from over 140,000 volunteer participants (a substantial share of the total population of Iceland now estimated at 320,000).
The company’s fortunes have waxed, waned, and waxed anew since its founding in 1996. Following initial high hopes for early commercialization of drugs benefitting from DeCode’s genetic research, the company fell on hard times in 2010 in the aftermath of the global financial crisis and Iceland’s own insolvency. DeCode succeeded in reorganizing, emerging from a Chapter 11 bankruptcy process as a smaller, leaner company, under the same management.Then in late 2012, Amgen acquired DeCode for a reported $415 million in order to gain exclusive access to the company’s genetic risk factors for dozens of diseases.
Over the years, DeCode has been in the news as much for its efforts to gain access to private genetic data as for its R&D. Most recently the company failed again in June 2013 to convince Iceland’s Data Privacy Authority (DPA), to allow DeCode to “apply computational methods to the country’s genealogical records to estimate the genotypes of 280,000 Icelanders who have never agreed to take part in the company’s research.”
Given the vast database of genotypic and related medical information that Decode Genetics has already harnessed, the company may be better served in the long-run to take a step back, particularly now that DeCode is a wholly owned subsidiary of an American biotech. Instead Decode has followed up on its failure to gain government sanction with individual solicitations to Icelanders to donate their DNA. This has not endeared to the company to at least some Icelanders: “Bam—you get the package, then the next day someone is there asking for the sample. No time for contemplation or making an informed decision. Maybe it’s being done with this urgency precisely because Decode doesn’t want people to have to think about it too much.” To at least some extent, the underlying concerns may go to the issue of exclusivity, where the data itself is not patentable and Icelanders who have opted out to date may feel that the genotypic data should not be the exclusive property of any one company.
Undoubtedly, the collection of Iceland’s comprehensive genetic data would make a further contribution to understanding genetic mutations contributing to a range of public health threats. In the long run, DeCode may be more successful carrying out this important project as a true Public-Private Partnership, ensuring access to the data to Icelandic research institutes as well as private companies on a non-exclusive basis.
About the author:
President of Finston Consulting LLC since 2005, Susan works with innovative biotechnology and other clients ranging from start-up to Fortune-100, providing support for legal, transactional, policy and “doing business” issues. Susan has extensive background and special expertise relating to intellectual property and knowledge-economy issues in advanced developing countries including India and South Asia, Latin America and the Middle East North Africa (MENA) region. She also works with governments, and NGOs on capacity building and related educational programs through BayhDole25. Together with biotechnology pioneer Ananda Chakrabarty, she also is co-founder of Amrita Therapeutics Ltd., an emerging biopharmaceutical company based in India with cancer peptide drugs entering in vivo research. Previous experience includes 11 years in the U.S Foreign Service with overseas tours in London, Tel Aviv, and Manila and at the Department of State in Washington DC. For more information on latest presentations and publications please visit finstonconsulting.com.