Are you at risk of cancer? Anne Wojcicki's controversial home DNA testing kit will tell you
The US health watchdog has clamped down on 23andMe, the affordable DNA-testing service. Anne Wojcicki, its founder, is sticking to her guns
8:00AM BST 27 Jun 2015
Anne Wojcicki, the founder and CEO of the genetic-testing company 23andMe, is at the Oxford University Museum of Natural History to speak at the annual Personalized Medicine World Conference about genetics and the revolution that she feels her company has begun. ‘I think your genetics are going to be a blueprint of your health,’ she tells me. ‘My dream is that one day you’ll know what type of diet is right for you; or if, like Angelina Jolie, you're at a higher risk of breast cancer, you could potentially have a double mastectomy. I think there’s no better opportunity to have a positive impact on someone’s life.’
Wojcicki, 42, founded 23andMe in April 2006 with two aims: supplying people with affordable genetic testing so they can take appropriate steps to improve their health and divert illnesses they may be susceptible to; and using the resulting data to arm doctors and scientists in the fight against genetic-mutation diseases.
‘One of the most important things we’re going to do in the next 20 or 30 years is change how we approach research,’ she says. ‘I think what’s interesting about the UK is that there is quite a culture of research and prevention. And if, for instance, we can galvanise all the people that are genetically high-risk for Alzheimer’s disease to participate in research studies, then we’re going to have an even better chance of a cure for the disease.’
‘I was investing in health-care companies and it started making me crazy that so many calls in health care are made for you, but you don’t actually have a voice.’
Anne Wojcicki
The company’s name is a reference to the 23 pairs of chromosomes that make up a strand of human DNA – and for £125 23andMe will analyse yours. When you register on its website, 23andme.com, you will be sent a testing kit; spit into a plastic tube that will be sent off to a lab in California, and in a few weeks’ time you will receive an email that could help shape your future. The email alerts you to your results, securely detailed online: 11 ‘genetic risk factors’ are analysed (how at risk you are to Parkinson’s or Alzheimer’s disease, for example); ‘drug response’ reports provide information on how your genetics may affect responses to certain medications; you will find out how likely you are to pass on 43 ‘inherited conditions’ (from cystic fibrosis to sickle-cell anaemia); and you will discover your genetic inclinations towards 38 ‘traits’ (from male pattern baldness to lactose intolerance). For the ‘genetic risk factor’ results, 23andMe provides the percentage chance the customer has of contracting the conditions or diseases based on the tests. These are shown next to the national average so as not to cause undue alarm. Customers can also elect not to discover some of the more potentially distressing results. ‘There are still a lot of questions over whether consumers can handle the information,’ Wojcicki says.
Wojcicki at an announcement for the Breakthrough Prize in Life Sciences, co-funded by 23andMe. PHOTO: AP
Your DNA can also be used to shed light on your ancestry (I, for example, discovered I am 0.01 per cent Colombian); the company is potentially capable of connecting you with relations around the world who are among the 950,000 people who have already done the 23andMe test – people you didn’t know existed.
23andMe’s health-predicting service has been available in the United Kingdom since December. It is also sold in Canada, Denmark, Finland, Ireland, Sweden and Holland – but not the United States. In 2013 the Food and Drug Administration (FDA), America’s health watchdog, restricted 23andMe’s services in the US to ancestry alone, and banned the company from marketing its health-prediction service after it failed to prove the tests were accurate. In a warning letter to Wojcicki it said that revealing potentially grave information about someone’s predisposition to life-threatening diseases might be unsubstantiated or, worse, cause harm.
'If you are worried about your memory, your GP should be the first port of call – not a home DNA-testing kit'
The Alzheimer's Society
Anne Wojcicki herself appears to carry the high-achieving gene. She was born in San Mateo County, California, on July 28 1973. Her father, Stanley, had fled communist Poland at the age of 12, studied at Harvard and served as a physics professor at Stanford University for 44 years before retiring in 2010; her mother, Esther, is an award-winning teacher at Palo Alto High School who founded what has become one of the most prestigious journalism courses in the US. Anne is the youngest of three daughters; her eldest sister, Janet, is a Fulbright-winning PhD anthropologist and epidemiologist at the University of California; her other sister, Susan, is a Harvard graduate who in 1998 rented her garage to a pair of students who were launching a tech start-up. The company turned out to be Google (Anne would later marry one of the founders, Sergey Brin), and Susan became employee number 16 the following year; she is now the CEO of YouTube.
After graduating in biology from Yale, Wojcicki moved to New York, where she worked for 10 years as an investment analyst on Wall Street. ‘I was investing in health-care companies,’ she tells me in Oxford, wearing a grey zip-up 23andMe hoodie, yoga sweatpants and tattered Converse. ‘And it started making me crazy that so many calls in health care are made for you, but you don’t actually have a voice.’
‘Your data might help us understand something about someone else on the other side of the world but, collectively, we’re all going to understand much better about human health.’
Anne Wojcicki
She spent a lot of free time volunteering in local hospitals and intended to become a doctor. But before she could get back to college she met a scientist at New York’s Rockefeller University, Markus Stoffel. He told her about a genetics project with the Micronesian island of Kosrae that planned to explore the DNA variations linked to obesity, high blood pressure and diabetes. The amount of potential DNA data that the study would collect, Stoffel told her, was overwhelming. He added that gaining access to the world’s DNA would change the world.
Wojcicki founded 23andMe in April 2006 alongside Paul Cusenza, a former senior vice-president at a genetics firm, and Linda Avey, a biologist (both her co-founders have since moved on). Delivering personalised genetics information to customers had been seen as fantastical until the Human Genome Project first sequenced our DNA in 2003 (after 13 years and $2.7 billion worth of work by thousands of international scientists). While 23andMe is not offering to map an entire genome (Steve Jobs purportedly paid £100,000 to have his mapped), it says that the thousands of genetic variants it does sequence is the closest you will currently get for an affordable fee.
Wojcicki with her now-estranged husband, Sergey Brin. PHOTO: Reuters
In May 2007 it emerged not only that Google had invested $3.9 million in 23andMe, but also that Wojcicki and Brin had got married in the Bahamas. (They have a seven-year-old son and a four-year-old daughter, but in August 2014 announced their separation.) Six months later 23andMe began selling its $999 testing kits on the American market, and within a year it had been crowned Time magazine’s Invention of the Year, had featured on Oprah Winfrey’s talk show, and had been awarded a $1 million grant by the US National Institutes of Health, the US government’s research agency. As the investment kept pouring in, Wojcicki was able to steadily drop the price of the testing kit; by 2012 it was down to $99. By the end of 2013 23andMe had attracted $126 million of investment and more than 400,000 customers. Then came the FDA’s suspension.
'Health care is the ultimate equaliser of humanity. It doesn’t matter how rich or poor you are, when you’re sick you want the exact same thing'
Anne Wojcicki
The FDA had long had 23andMe in its sights. In 2010 it informed the company that its genetic tests were now considered medical devices and as such required federal approval to market them. 23andMe filed applications for clearance in July and September 2012, but was unsuccessful. In November 2013 the FDA ruled that 23andMe had not demonstrated that it had ‘analytically or clinically validated the Personal Genome Service for its intended uses’ and stated that it was ‘concerned about the public health consequences of inaccurate results from the PGS device’.
There has been concern in the UK, too. When 23andMe was debated in the House of Lords in December last year Lord Howe, on behalf of the Government, said, ‘The Government has advised that no test will be 100 per cent reliable, that 23andMe should be used with caution and that the information provided by 23andMe should not lead consumers to make any changes of medical significance, such as changes to medication, without first consulting their health-care professional.’ On its launch in the UK, the Alzheimer’s Society commented, ‘If you are worried about your memory, your GP should be the first port of call – not a home DNA-testing kit. Research has identified a number of genes that may play a role in the development of dementia but we don’t know enough to use these as a diagnostic tool.’ The Department of Health urged people to think carefully before using private genomic services as ‘no test is 100 per cent reliable’.
Registers to 23andMe are sent a kit for collecting a saliva sample
‘I don’t think we’re playing God,’ Wojcicki says when I ask about the criticism. ‘We’re trying to help people really understand. In the same way that if you look in the mirror and you see a mole that looks funny, you want to do something about it, so you will also look in your genome. I have mothers with small children come to me and say, “You found that I had early breast cancer – because of you I don’t have cancer.” You’ve just prevented that person from dying early, and to prevent an early, unnecessary death is incredibly meaningful. We have so many of these stories now, people writing in just to say thank you. I love that.’
After screening her own genetic data, Wojcicki reduced her alcohol intake to minimise her heightened risk of breast cancer, quit coconut water as she is slightly predisposed to diabetes, and wards off anaemia with extra iron in the form of beef burgers. ‘I discovered that I need meat,’ she says. ‘It’s interesting, I think genetically there are people who need different things, like exercise. I need the exercise, others not so much, and I think more and more we’ll start to understand why people’s bodies function in certain ways. I look at my mother, for example, and she doesn’t need much sleep. She’s super high energy all the time and can’t stand coffee. I think that we’ll start to understand all these types of variations, and then this will help individuals manage their life.’
'I have mothers with small children come to me and say, “You found that I had early breast cancer – because of you I don’t have cancer”'
Anne Wojcicki
She and Brin had their daughter’s DNA tested antenatally, and their son’s when he was an infant. Brin’s own results showed a high risk of Parkinson’s. His mother, Eugenia, suffers from the disease, and he possesses the same LRRK2 genetic mutation, putting his odds of inheriting Parkinson’s at anything from 20 to 80 per cent. (The average person, according to 23andMe, has a 1-2 per cent chance of developing Parkinson’s.) He has since upped his coffee intake and workout regimen – two behaviours thought to stem the disease. The couple donated $50 million to the Michael J Fox Foundation for Parkinson’s Research, and 23andMe began its own Parkinson’s Research Community, enrolling more than 10,000 people to form the largest group of genotyped people with Parkinson’s in the world. The resulting data have allowed scientists to analyse and better understand the relationship between environmental and genetic factors in the development of the disease.
‘If you can collect enough data – and I think understanding human health is a data question, so you need to collect enough data, which is part of the beauty of the system that we have – then we’re all helping each other learn about ourselves,’ Wojcicki says. ‘Your data might help us understand something about someone else on the other side of the world but, collectively, we’re all going to understand much better about human health.’
Research is a key component of the 23andMe model. People who register for DNA testing on the website are invited to share their data, and so far 80 per cent of its 950,000 users have opted in. In 2013, before the FDA ruling, 23andMe received more than $500,000 from the National Institutes of Health to crowd-source studies on allergies, asthma and other conditions. Through this and the website’s seemingly infinite range of surveys, more than 200 million questions have been answered, providing the company with an unprecedented bank of information (user anonymity and data protection are paramount, Wojcicki emphasises). As a result, 23andMe has published 16 peer-reviewed studies in the past three years.
Samples are sent to a lab in California, where they are analysed. PHOTO: Spencer Lowell
Samples are sent to a lab in California, where they are analysed. PHOTO: Spencer Lowell
‘What we’re trying to do is invent a new way of doing those massive studies,’ says Wojcicki, who has previously stated that agreeing to share information is comparable to a charity donation. ‘There’s a huge long tail of human variation and so we want to run massive studies and really start to understand how disease, genotype and environment all interact.’
Despite the positivity around its research work, 23andMe still has its hands tied when it comes to health-related services in the States, although in February this year the FDA did grant the company authorisation to market its test for one rare disorder, Bloom disease. The company describes this as ‘the first step in 23andMe’s commitment to returning health information to their US customers’.
Wojcicki remains positive. And very confident. ‘The goal was a million people [to have taken the tests], so we’re almost there,’ she says. ‘Do I want 25 million? I want almost everyone. When I lived in New York I really couldn’t stand the financial inequalities I saw, and the thing about health care is that it’s the ultimate equaliser of humanity. It doesn’t matter how rich or poor you are, when you’re sick you want the exact same thing. My mother said to me in her first discussion with me about genetics, when I was about my son’s age, “There’s genes and there’s environment and they both influence each other.” You must understand that you’re dealt this deck of cards, but you can influence it. And I’ve definitely seen a lot of people who are sick that are unnecessarily sick – they got sick early and there’s nothing you can do. And so, how do you prevent that in the future?
Wojcicki says: 'If you look in the mirror and you see a mole that looks funny, you want to do something about it, so you will also look in your genome.'
‘You don’t do new things and try to change the system without generating debate. So we’ve encouraged that debate, that discussion and those opportunities to really engage with individuals as we are trying to change it. We’re trying to be more radical, and we understand that will definitely make people concerned. But it’s our job then to be as communicative and available as possible, so people can feel comfortable with what we’re doing. Medicine is clearly changing quite a bit and it’s changing in that consumers are taking more control over it. The US and the UK are super different and I think it’s all because of the payment system. One of the reasons I was excited to come to the UK was the NHS. Because of the NHS and the single-payer system there is much more of an incentive to understand who gets what care and at what time.’
Back in Oxford Anne Wojcicki is soon due on stage to thank the attendees who have supplied saliva to 23andMe (many of whom are sporting the company’s 'I SPAT' badges handed out on entry). We talk about Angelina Jolie. ‘The second editorial she wrote [for The New York Times in March] ends with “knowledge is power”,’ she says. ‘It’s a really powerful statement that we use a lot. I do think that, ultimately, knowledge is powerful for people. Not everyone wants the information, and that’s a personal choice, but having information can be incredibly powerful for individuals. You can be proactive once you have the information.’
This post is on Healthwise
