23andMe asks hospitals to help it recruit the sickest coronavirus patients for DNA study

At-home genetic testing giant 23andMe has launched a DNA study in the hopes of discovering why coronavirus makes some people so much sicker than others.

And in order to do so, it’s asking hospitals to help it sign up the sickest coronavirus patients, because in order to find the genes that may put some people at risk of becoming sicker, they need the genes of those people. 

Launched in April 6, more than 500,000 people around the world who were already 23andMe users have enrolled, including 7,000 people who have tested positive for coronavirus. 

But the central goal of the research is to identify not just who gets coronavirus, but who gets sickest from it, and there simply wasn’t enough data on this group among 23andMe customers. 

So the company is now offering to send free test kits to people hospitalized with ‘severe’ COVID-19. But many of these patients need oxygen support, including being put on a ventilator, leaving them unconscious and unable to speak for themselves.

The company is reaching out to hospitals to help them recruit up to 10,000 additional participants, a senior scientist told Stat News. 

Personal genetic testing company 23andMe this week expanded its DNA study that aims to find genes that may make some people at greater risk getting sickest from coronavirus by recruiting up to 10,000 non-customers with ‘severe’ infections 

Every day, in New York alone, hundreds of new patients are still being hospitalized for coronavirus. 

Although hospitalization and death rates are far higher among older patients or those with underlying health conditions, 26.1 out of every 100,000 people hospitalized for coronavirus are in their 30s, according to the Centers for Disease Control and Prevention (CDC). 

Forty-five out of every 100,000 are in their 40s. 

Still, most younger people develop only mild to moderate disease after being infected. 

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Little is left to explain why some of these young, otherwise healthy young people get so sick. 

Some scientists – including those who work at 23andMe – are looking to genetics for an explanation.

Determining what gene variants or collection thereof might put some people at greater risk for a disease than others requires collecting and sequencing the full set of DNA from a wide swath of the population – often hundreds of thousands of people – in what’s called a genome-wide association study (GWA). 

23andMe is only one of many groups investigating the role of genetics in coronavirus severity. 

Its competitor Ancestry.com is also conducting a similar study, but most of this research is being done by universities, not private companies. Many of these institutions are collaborating through the COVID-19 Host Genetics Initiative (COVID-19 hg). 

Dr Jean-Laurent Casanova of Rockefeller University is one of the scientists involved in COVID-19 hg (not in 23andMe’s research), and he thinks that these rare, young patients who fall so desperately, seemingly at random, may have invisible risk factors, called ‘inborn errors of immunity,’ he told DailyMail.com in a recent interview.

He and his international team of collaborators are recruiting coronavirus patients in their 30s, 40s and 50s whose illnesses are life-threatening and plan to sequence and test their genetics, looking for a piece of code that makes them more vulnerable. 

In addition to obvious traits like our hair and eye color, our DNA also contains instructions for our bodies to build everything from brain cells and bones to the core of our immune system. 

Chronic health conditions like heart and lung diseases and diabetes impact the immune system too, diminishing our natural ability to fight off infection. 

Some people are born immunodeficient due to genetic conditions or variations. 

But Dr Casanova is one of the scientists at the forefront of the discovery that genetics may also make some people susceptible to specific infections, not unlike the BRCA genes’ effects on risks for certain malignant tumors, particularly breast cancer. 

‘Some people have genetic variations that make them selectively vulnerable to that particularly virus that are silent until the moment that the patient is hit by this specific virus,’ Dr Casanova explained in a Skype interview with DailyMail.com.  

But they’ve already begun collecting patients from around the world – most of them are in the US and France – to study. 

‘We’re recruiting patients, the relatively rare ones with unexplained, severe disease’ Dr Casanova said. 

But that’s difficult in the case of coronavirus, a disease so new that only 4.3 million people around the globe are known to have it, and many more are suspected to be undiagnosed. 

Although 23andMe has about 10 million customers who have used its service. But people have to consent to be involved in any study involving their health data.   

Universities and their partner hospitals already have patient data, and safeguards in place to protect it. 

A private company like 23andMe faces a steeper data collection challenge because they have to find these patients through targeted ads or by going through hospitals, as they are now attempting.  

‘Opening up the research to individuals with more severe symptoms will increase our power to learn how genes play a role in the severity of this disease,’ said Dr Joyce Tung, 23andMe’s Vice President of Research, in the company’s blog post about the project. 

As it does in most of its projects, 23andMe promises to protect patient privacy by de-identifying their genomic data – removing any of its links to their names and registrations. 

‘If you consent to participate in this study, 23andMe may only share your de-identified, individual-level genetic and survey data, with qualified research collaborators for COVID-19 and related research,’ its website about the COVID-19 project says. 

‘Individual-level data means related to a single person. “De-identified” means that the individual-level data we share about you with researchers will be stripped of components that could directly identify you (such as name, date of birth, and address).’

But, the company’s website admits that, while it is required by law to protect customer data, it can also be compelled by law to turn it over.