by Dr. Hsien-Hsien Lei
Posted November 30, 2007 in DNA Testing, Personalities with DNA
As promised, here’s my exclusive interview with Jorge Conde, President and CEO of Knome – the latest company to offer personal genome services. Jorge is a graduate of Harvard Business School and also holds an MS from the Harvard-MIT Division of Health Sciences and Technology (HST) and a Bachelor’s degree in Biology from The Johns Hopkins University. He previously worked in business development at Helicos Biosciences as well as other life sciences companies. Jorge is clearly motivated and energized by the promise of personal genomics. He’s an up-and-coming player in the field who’s one to watch!
Hsien: Knome claims to be the first company to offer whole-genome sequencing and analysis to private clients but it certainly won’t be the last. How will Knome distinguish itself from competitors like Navigenics, 23andMe, and (to an extent) The Personal Genome Project?
Jorge: We’re focusing on whole-genome sequencing now because we believe that this is the approach that will drive personal genomics forward. An advantage for us to being first is that, from inception, we’ve built our platform and services specifically around whole-genome applications. And because we’re initially focusing on a limited number of clients, we can provide first-in-class service â€“ customized and personalized to each individual client.
We’ve also spent a considerable amount of time thinking about our responsibilities as a personal genomics company. At Knome, we’ve taken a novel approach to ensuring that our clients’ genomic information remains private and secure. We’ve built our platform to completely avoid centralized storage of databases containing sensitive genomic information. As you can imagine, these databases could prove to be very tempting targets.
Security is further strengthened by keeping control in the hands of those that value it most. Using our platform, our clients control how their information is accessed and shared, and they retain full ownership over their own genomic information â€“ after all, they’re paying us to help them understand their genome and not to take possession of their DNA.
Hsien: At this point in time, it’s far easier to sequence the genome than to understand it. How does Knome plan to organize genomic information and make it directly relevant to the average consumer?
Jorge: We’ll be talking much more about this in the near future, but clearly this is central to the service we will be providing to our clients. Broadly speaking, there are two key challenges to relating whole genome information to the average consumer.
The first, of course, is making sense of all the research that is currently out there and staying current on new information as it becomes available. Of course, we want to be sure that our analyses accurately and responsibly represent the best and most current scientific knowledge, and we’re working with teams of leading bioinformaticians, geneticists and clinicians to tackle this challenge.
The second challenge will be to communicate inherently complex, and often inconclusive, information in a way that the average consumer can understand. As you know, our genomes provide a wealth of information about us but there are very few yes/no answers, so it will be critical that our clients understand what this information may tell us â€“ and what it cannot tell us. Our focus on individualized interpretation and consultation services will enable us to establish a direct line of communication with them to help guide them.
And because a client’s whole-genome will have already been sequenced, we will be able to update our analyses as our understanding improves.
Hsien: In the Knome FAQ, it seems that the company is positioning itself as a comprehensive genome services company, including both medical genetic information along with ancestry and genealogy. How are these two sides of genetic testing compatible?
Jorge: We want our clients to understand that our genomes can tell us more about ourselves than just our risk for developing disease. Our ancestry and genealogy make up a very important part of who we are, and this is an application that the average consumer can appreciate and enjoy. That said, our initial focus will be on medical genetic information analysis and interpretation services. In the future, we hope to develop ancestry, genealogy and other novel applications.
Hsien: What kind of person do you think will be a first generation Knome customer? What kind of person do you think will benefit most from whole genome sequencing?
Jorge: Pricing for our service starts at $350,000, so our first generation clients will of course need to have the financial means to use our services. That said, these early adopters will also be pioneers in the personal genome revolution and will be amongst the first people in history to be fully sequenced. These participants will be on the cutting edge of science and medicine. They will have access to the latest information as it becomes available and those that are willing to learn as we learn (and can appreciate risk prediction and the changing nature of our scientific understanding) will be best positioned to benefit.
We also hope to attract people who have a personal desire to contribute to expanding the scientific frontier, which is why we also offer each client the option of allowing researchers to have access to their anonymous sequenced genome. But, as I mentioned previously, while we hope that a significant percentage of our customers choose to participate, it is certainly not required.
Hsien: What do you think are the biggest obstacles to overcome in the personal genome revolution?
Jorge: Clearly there are many challenges today to fully realizing the potential of personal genomics. The most immediate obstacle is the cost of sequencing. Fortunately, some very smart people are out there working to solve this problem. The next challenge will be to enhance our understanding of human genetic variation, and we believe Knome is well-positioned to make a significant contribution here. And, of course, the overarching obstacle will be how we as a society deal with the legal, privacy and ethical issues surrounding the use, and potential misuse, of personal genomic information.
Thanks for taking the time to answer these questions, Jorge! I cannot believe that it is now possible to get our genomes sequenced without signing up to be a research subject.
Update: David Hamilton of Venture Beat has more on Knome.
Personal Genome Sequencing Company Knome Launches...
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Consumer Genetics Show 2009 in Boston...
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People Who’ve Had Their Genomes Sequenced...
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Eye on DNA September Winner and October Contest...
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