Observations From the Consumer Genetics Conference

The First and Certainly Not the Last Meeting

I was able to catch the last day of the three-day Consumer Genetics Conference in Boston last week. Part scientific exchange, pep-rally, and company show-and-tell, it attracted about 500 attendees. Jumping to the end, the meeting was concluded with, "See you all next year," though Linda Avey, co-founder of 23andMe, thinks we'll see big changes in the Conference down the road. She likened genomics to the early days of the Internet. "There were conferences just on the Internet," she said. "Now, you wouldn't think of such a thing -- it's ingrained in everything."

So, the future prospect of some sort of Conference occurring next year was assured. I'm not sure the same can be said of this emerging industry. Sure, enormous advancements in genomics technology have been made. Cash has been poured into a variety of companies, though unevenly distributed to be sure. A variety of consumer and medical applications are beginning to take hold. Yet, from what I observed, the overarching question that speaker after speaker sought to address was, "Is consumer genomics ready for prime time?"

Here are some of the challenges I noted:

The Science. There are still worlds to conquer in order to achieve the accuracy, speed and cost required to achieve business success. Then, there are the issues of standardization: how much information is sufficient to associate a genetic variation with a medical issue or outcome, and how do we account for multi-genic contributions to a drug response or disease process?

Investment. In this economic environment, some companies are having a difficult time hurdling over the bar set by venture capitalists for business and financial modeling. Making the leaps from research to development to marketing can be harder and longer than ever.

Medical Education. Genomics needs medical champions yet there is practically no training available for healthcare providers. Interestingly, the Life Technologies Foundation announced that it is teaming with the New York Academy of Sciences to offer genomics training to medical students. We'll have to track this, given the hardening line taken against industry support for medical education.

Public Education. This, too, is a substantial obstacle. What to expect, what to do with genetic information, what the probabilities really mean? "People don't like probabilities," said Talya Miron-Shatz from the Center for Health and Wellbeing at Princeton University. "They like binary - yes/no - information" but that's not what they'll be receiving.

Proving Value. As a corollary to the above points, what does value look like? How can we measure outcomes? Who will pay for genomic tests?

Healthcare Delivery. An important issue, though not addressed specifically, is how to extend the benefits of genomics to all. Carol Isaacson Barash, Principal at Genetics, Ethics & Policy Consulting, Inc. remarked to me that, "were it not for the public's gift [of resources to the NIH], our knowledge would not exist. Given the global interconnectedness of data and economies, ensuring global benefit is, in my view, an urgent need."

But maybe we don't need genomics at all. That's what James Heywood, Chairman of Patients Like Me, envisions -- a "Twitter for medicine" where participants share their health information to "achieve personalized medicine based on phenotype."

It seemed clear, however, that there is enough "there there" to be optimistic. Genomics has and will continue to make an important mark on health and medicine. Mark Stevenson, President and COO of Life Technologies, predicted that genomics will be "a standard tool in the doctor's office in 8-10 years. He sees a model similar to i-Tunes -- a decoupling. The location of diagnosis and the location of treatment will not be dictated by the hospital or the physician but by the consumer.

Stay tuned!