23andMe Opens Up About Direct-to-Consumer Genetic Testing

Damian McNamara

March 10, 2016

LA JOLLA, California — "If we're going to have this genomics revolution, it's going to be driven by the consumer," Anne Wojcicki, chief executive office and cofounder of 23andMe, said here at the Future of Genomic Medicine IX.

Wojcicki is a steadfast believer in direct-to-consumer genetic testing, and her company provides consumers with genetic information on ancestry, carrier status, and traits. The company is also making a concerted effort to increase physicians' involvement and education so they can help patients understand the findings.

"We can get a lot of people to understand what their genome means," Wojcicki explained. "More than 90% of our consumers have the comprehension, which means the average individual in this country can understand genetic information."

However, some members of the audience questioned whether all consumers are capable of interpreting their results and knowing when they should seek guidance from a medical professional.

"It's a complicated issue," said Susan Vear, MD, from Nationwide Children's Hospital in Columbus, Ohio.

"As some of the scientists at the meeting showed, genomics is getting more and more complex. It's no longer one gene, one trait, or one variant, one trait," she told Medscape Medical News.

"I agree with Anne that genetic information should be yours, and available to scientists too," she said. But, Dr Vear pointed out, the only way to confirm if a patient understands their genetic information is through a face-to-face, back-and-forth discussion.

"She's saying the onus is on 23andMe for a clear report. I'm a hematologist oncologist. I conduct clinical trials for leukemia, so I explain complex gene and biology information day in and day out," Dr Vear said. "But when I ask patients what they understand, sometimes they don't really understand. And some people may be ashamed to admit they don't understand."

During the panel session, a family physician asked how people who read at a sixth-grade level could understand, especially because genomics involves probabilities.

"You're not alone in that worry," Wojcicki replied. But look at the world of over-the-counter medicine, she said. It has been made understandable.

Educating Physicians

Providing consumers with answers online eases the use of physician and genetic-counselor resources and time; patients can take just the "bigger questions" to their physician, Wojcicki added.

The company is making a determined effort to educate doctors. Although 23andMe is consumer-directed, they have a website for physicians that provides webinars and other resources to inform physicians about what patients might ask. And 23andMe has a seven-member medical team on staff to answer specific questions.

"If physicians don't understand what patients are bringing them, then we've failed," Wojcicki told Medscape Medical News. "We're a direct-to-consumer company, and we've failed if they go to their physician and the physician says, 'there's nothing we can do'."

About one in four consumers discuss results from their direct-to-consumer genetic testing with their primary care provider within 6 months, according to a survey of 1026 people (Ann Intern Med. Published online March 1, 2016). About 35% who consulted their primary care physician were very satisfied with the encounter. Frequent themes describing these encounters included actionability of the results or use in care (32%), physician engagement or interest (25%), and lack of physician engagement or interest (22%).

"Key to me is making sure we're putting sufficient resources into supporting the physician," Wojcicki said. A plus for physicians is that counseling patients about genomic information can prompt behavioral changes. In fact, "42% of people are motivated to make a change based on genomic information. It becomes an ah-hah moment."

Amassing Data

23andME offers all customers an opportunity to opt in to research approved by institutional review boards, and more than 80% of their 1.2 million customers have agree to participate, Wojcicki said. She then reported numbers that many investigators can only dream of: 243,000 people with the APOE e4 genetic variant, 191,000 with cardiovascular disease, 159,000 with depression, 90,000 with asthma, 78,000 with cancer, and 35,000 with psoriasis.

"We can collect really high-quality data from consumers. We collect about 2 million data points every week," she said. "The benefit gets more into the research aspect, where all of this genetic medicine can go, and that's what I'm most excited about."

"I sometimes feel a bit guilty that we are sitting on this much information. We feel a responsibility," Wojcicki said. Twice a year, 23andMe invites academic researchers to access the data, and the company then selects and sponsors the resulting studies.

Aiming to Expedite Drug Discovery

"It really starts with an engaged consumer who will give you more and more information. The aggregate data will help us evaluate the genome and lead to more efficient drug discovery, too," Wojcicki explained. For this reason and others, 23andMe recently launched a therapeutics division.

"We do pharmaceutical partnerships and we do our own drug discoveries. We've opened up a lab," she reported. "I really want to see what is the potential for us looking at all these genomic data. Can we be more efficient and effective in drug discovery?"

Wojcicki said she is aiming for new medications that do not cost $2 billion in research and development.

She said she is aware of the human-interest side of her company's testing. "It's important that people don't think of genetics as just about death and dying. We want to show people the beauty of life. People love their Neanderthal percentages, wellness, and traits," she said.

Ms Wojcicki is chief executive officer and cofounder of 23andMe. Dr Vear has disclosed no relevant financial relationships.

Future of Genomic Medicine (FOGM) IX. Presented March 3, 2016.

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