This week 23andMe scientists <a href="https://www.medrxiv.org/content/10.1101/2020.09.04.20188318v1" target="_blank" rel="noopener noreferrer">published findings</a> from the first four months of our COVID-19 study using data from more than a million research participants that found both genetic and non-genetic associations for susceptibility and severity to COVID-19.
<img loading="lazy" decoding="async" class="alignright wp-image-28208 size-medium" src="http://35.88.189.111/wp-content/uploads/2020/04/1080x1080-COVID-IG-Copy-16-300x300.jpg" alt="A image of the globe and the double helix to represent those who have opted into participate in research on COVID-19" width="300" height="300" srcset="https://blogcms.23andme.com/wp-content/uploads/2020/04/1080x1080-COVID-IG-Copy-16-300x300.jpg 300w, https://blogcms.23andme.com/wp-content/uploads/2020/04/1080x1080-COVID-IG-Copy-16-1024x1024.jpg 1024w, https://blogcms.23andme.com/wp-content/uploads/2020/04/1080x1080-COVID-IG-Copy-16-150x150.jpg 150w, https://blogcms.23andme.com/wp-content/uploads/2020/04/1080x1080-COVID-IG-Copy-16-768x768.jpg 768w, https://blogcms.23andme.com/wp-content/uploads/2020/04/1080x1080-COVID-IG-Copy-16-880x880.jpg 880w, https://blogcms.23andme.com/wp-content/uploads/2020/04/1080x1080-COVID-IG-Copy-16-271x271.jpg 271w, https://blogcms.23andme.com/wp-content/uploads/2020/04/1080x1080-COVID-IG-Copy-16-372x372.jpg 372w, https://blogcms.23andme.com/wp-content/uploads/2020/04/1080x1080-COVID-IG-Copy-16-574x574.jpg 574w, https://blogcms.23andme.com/wp-content/uploads/2020/04/1080x1080-COVID-IG-Copy-16-980x980.jpg 980w, https://blogcms.23andme.com/wp-content/uploads/2020/04/1080x1080-COVID-IG-Copy-16.jpg 1080w" sizes="auto, (max-width: 300px) 100vw, 300px" />
The findings will be shared with researchers around the world as part of what has become an unprecedented effort among scientists looking for new treatments for the virus. Part of 23andMe’s motivation for this study was to leverage our unique research model to quickly find insights that could be shared with others working toward treatments.
Because the intent was to quickly make this data available, many of these findings have been shared in the months since the study began.
<h6>Genetic Associations with COVID-19</h6>
But the publication this week also includes data strengthening an association between severe respiratory complications and a specific variant in the gene cluster in chromosome 3. This region includes several different genes (SLC6A20, LZFTL1, CCR9, CXCR6, XCR1, and FYCO1). Some play a role in the immune response to infection in the lungs. The gene SLC6A20, may play a role in the expression of the ACE2 protein which in turn could lead to greater viral uptake.
Along with this genetic association, 23andMe’s researchers found strong evidence for the role of the ABO blood group for both the severity and susceptibility to COVID-19. Our findings, which were shared previously, underscore<a href="https://blog.23andme.com/23andme-research/blood-type-and-covid-19/"> the role of blood type in COVID-19</a> infections, specifically that blood type O might be protective against the virus. The significance of this association may be related to the role of blood clotting complications in cases of people with COVID-19.
<h6>Non-Genetic Associations for COVID-19</h6>
23andMe’s research also revealed many non-genetic associations that replicated other studies including the finding that<a href="https://blog.23andme.com/23andme-research/impact-disparities-of-covid-19/"> Black and Latino populations</a> have been hit much harder than white communities.
For Latinos, the higher rates of hospitalization were consistent with higher rates of infection, according to 23andMe’s data. But for Black research participants, the risk of hospitalization was disproportionately high and remained that way when adjusted for socioeconomic factors as well as age, sex, and for several underlying health conditions like type 2 diabetes or hypertension.
Our data showed that Black research participants were 83 percent more likely to be hospitalized with COVID-19 compared to European respondents after adjustment for age, sex, socioeconomic status, body mass index, and a pre-existing condition.
23andMe’s researchers also found other risk factors for hospitalization noting that men required hospitalization more often than women. The same for those who were older and poorer.
In addition, 23andMe found that certain underlying chronic health conditions like obesity and type 2 diabetes significantly increased the risk for hospitalization for COVID-19. Being overweight increased the risk for hospitalization by about 34 percent over those with normal body mass index.
<h6>We’re All in This Together</h6>
This pandemic impacts all humanity, and as such it has fueled an unprecedented level of scientific collaboration across the globe. 23andMe and its team of scientists, researchers, and engineers chose to become part of this effort early on, engaging the <a href="https://www.23andme.com/research/" target="_blank" rel="noopener">23andMe research</a> platform to quickly recruit research participants and study this novel disease.
In less than four months more than a million 23andMe customers consented to participate, of those more than 15,000 had tested positive for COVID-19, with 1,100 of them suffering symptoms that required hospitalizations. Through their participation, and during a highly compressed timeline, our researchers were able to make new findings, replicate others, and contribute to the larger effort by other researchers who are searching for treatments. (23andMe is still recruiting individuals who have been hospitalized for COVID-19. You can find out more <a href="https://you.23andme.com/covid19-study/">here</a>.)
We are now sharing these findings through a full-set of de-identified summary statistics that will be made available to qualified investigators. Those investigators will have to enter into an agreement with 23andMe to protect participant confidentiality. Interested investigators should visit the following: <a href="https://research.23andme.com/covid19-dataset-access/">https://research.23andme.com/covid19-dataset-access/</a>
<hr />
*23andMe’s COVID-19 study is made possible through the participation of more than a million of our customers who consented to answer survey questions for this research. But this study also involves the hard work of a core team of our health researchers, program/product managers, data scientists, engineers, and geneticists. Among them are: Michelle Agee, Amanda Altman, Stella Aslibekyan, Adam Auton, Jess Bielenberg, Adrian Chubb, Daniella Coker, Raffaello d’Amore, Scott Dvorak, Alison Fitch, Scott Hadly, Pooja Gandhi, Andy Kill, Trung Le, John Matthews, Jennifer McCreight, Taylor Morrow, Sungmin Park, Jeff Pollard, Anjali Shastri, Janie Shelton, Teresa Filshtein Sonmez, Jason Tan, Lindsey Tran, Cat Weldon, Chelsea Ye, Yiwen Zheng

23andMe Blog

23andMe Blog Team

23andMe COVID-19 Study Findings Published

According to a new study from 23andMe and the University of California, San Francisco (UCSF) School of Pharmacy, most people have at least one genetic variant in the CYP2C19 gene that may alter how our bodies process certain commonly used medications. Most people don&#8217;t know about these variants because this kind of <a href="https://www.23andme.com/" target="_blank" rel="noopener">genetic testing</a>, called pharmacogenetic (&#8220;farm-uh-ko-genetic&#8221;) testing, isn&#8217;t yet widely used.
The 23andMe study, published in the online journal Clinical and Translational Science, confirms previous smaller studies and underscores the potential benefit that widespread preemptive pharmacogenetic testing could have.
&#8220;Our study reaffirms how common these variants are in how we metabolize certain medicines and how many people could benefit from knowing about them,&#8221; said Alison Chubb. &#8220;This is information they could share with their doctor if they ever need one of the relevant medications.&#8221;
<img loading="lazy" decoding="async" class="alignright wp-image-28452" src="http://35.88.189.111/wp-content/uploads/2020/09/CYP2C19-Variants-By-Ethnicity-300x169.png" alt="This graphic shows how common the CYP2C19 varaints are among 23andMe customers of different ethnicities." width="400" height="225" srcset="https://blogcms.23andme.com/wp-content/uploads/2020/09/CYP2C19-Variants-By-Ethnicity-300x169.png 300w, https://blogcms.23andme.com/wp-content/uploads/2020/09/CYP2C19-Variants-By-Ethnicity-1024x576.png 1024w, https://blogcms.23andme.com/wp-content/uploads/2020/09/CYP2C19-Variants-By-Ethnicity-768x432.png 768w, https://blogcms.23andme.com/wp-content/uploads/2020/09/CYP2C19-Variants-By-Ethnicity-880x495.png 880w, https://blogcms.23andme.com/wp-content/uploads/2020/09/CYP2C19-Variants-By-Ethnicity-1180x664.png 1180w, https://blogcms.23andme.com/wp-content/uploads/2020/09/CYP2C19-Variants-By-Ethnicity.png 1280w" sizes="auto, (max-width: 400px) 100vw, 400px" /> 
Alison is a Senior Product Scientist at 23andMe and senior author of the study.
The study follows an FDA 510(k) clearance that modifies the agency’s previous clearance of 23andMe’s CYP2C19 Drug Metabolism report by removing the need for confirmatory testing and allowing the company to provide interpretive drug information based on genetic factors for two medicines: clopidogrel and citalopram.
<h2>CYP2C19 and Drug Metabolism</h2>
Regarding medicines, we know that one size doesn&#8217;t necessarily fit all. People may respond differently to the same medicine due to factors like age, weight, liver and kidney function, diet, or even other medicines they might be taking. However, genetic factors also play a role in some medicines, and the CYP2C19 (often pronounced &#8220;sip-two-see-19&#8221;) gene is one example.
The <a href="https://ghr.nlm.nih.gov/gene/CYP2C19">CYP2C19 gene</a> provides the instructions for making the CYP2C19 enzyme, primarily found in the liver, and helps the body process (or &#8220;metabolize&#8221;) important medications. For example, clopidogrel is a blood thinner for treating and preventing heart attacks, while citalopram is an antidepressant. The enzyme also helps process over-the-counter treatments for acid reflux and ulcers called proton pump inhibitors.
Specific inherited variants in the CYP2C19 gene impact how well the CYP2C19 enzyme works. People with these variants may process certain medicines faster or slower than usual, affecting how well the medicines work or the chances they&#8217;ll cause side effects. For a few medications, the potential impact of CYP2C19 variants is so strong that the FDA-authorized drug labels include a warning or dosing recommendation based on CYP2C19 genotype. To help summarize these actionable gene-drug effects, the FDA has recently published a helpful <a href="https://www.fda.gov/medical-devices/precision-medicine/table-pharmacogenetic-associations">table of pharmacogenetic associations</a> for healthcare providers that includes CYP2C19 and other genes.
<h2>23andMe Study Details</h2>
Researchers wanted to know just how common CYP2C19 variants are among 23andMe participants who have consented to research and how someone&#8217;s ancestry affects their chance of having one. The study looked at the distribution of the three most common CYP2C19 variants across nine self-reported ancestry groups. It found that almost 60% of the 2.29 million participants had at least one variant that could affect how they process certain medicines.
Two of the variants studied result in a CYP2C19 enzyme with decreased activity, and people with these variants may process some medicines slower than average. These variants were most common in participants with East Asian, South Asian, and Hawaiian or other Pacific Islander ancestry.
In contrast, the third variant that researchers looked at results in a CYP2C19 enzyme with more activity than normal, so some people with this variant may process certain medicines faster than normal. This variant was most common in people of European, African American, Ashkenazi Jewish, and Middle Eastern descent.
<h2>Real World Impact</h2>
Although people of Hispanic or Latino descent had the lowest rate of CYP2C19 variants compared to other groups, they still had a 50% chance of having at least one variant. The take-home message is that these pharmacogenetic variants are common across all ancestries, which is quite different from the distribution of many disease-related genetic variants that are often rare and ancestry-specific.
But what is the potential real-world impact of these findings?
To answer that, we need to know how many people actually use the medicines that depend on CYP2C19 metabolism. To get insight into this question, the researchers looked at prescription rates in the UCSF health system (2012-2019). They found that about 16% of patients had been prescribed one or more medications metabolized by CYP2C19. They then extrapolated from the 23andMe variant frequencies. They calculated that more than 120,000 prescriptions in the UCSF system were likely written for people with non-normal CYP2C19 metabolism. In addition, those patients might have benefited from knowing about their CYP2C19 variants before they started their medicines. This would have allowed them to discuss with their doctors the available options based on their genetic results.
<h2>Pharmacogenetics Reports at 23andMe</h2>
In October 2018, the <a href="https://blog.23andme.com/news/23andme-granted-the-first-and-only-fda-authorization-for-direct-to-consumer-pharmacogenetics-reports/">FDA granted 23andMe authorization</a> to report CYP2C19 variants and predicted metabolizer status directly to consumers. We were also able to include variants in seven other genes that also impact drug metabolism. The initial 23andMe Pharmacogenetics* reports, including the CYP2C19 Drug Metabolism report, will be available later this year.
_____________________________________________________________________
<h6>NOTE</h6>
*The 23andMe PGS test uses qualitative genotyping to detect 6 variants in 3 genes in the genomic DNA of adults from saliva to report and interpret information about the processing of certain therapeutics to inform discussions with a healthcare professional. It does not describe if a person will or will not respond to a particular therapeutic and does not describe the association between detected variants and any specific therapeutic. Results should be confirmed in a clinical setting with independent genetic testing before taking any medical action.  
Warning: Test information should not be used to start, stop, or change any course of treatment and does not test for all possible variants that may affect metabolism or protein function. The PGS test is not a substitute for visits to a healthcare professional. Making changes to your current regimen can lead to harmful side effects or reduced intended benefits of your medication, therefore consult with your healthcare professional before taking any medical action. For a complete list of the 6 variants tested.

Common Genetic Variants Impact Drug Processing

How employee volunteerism led to 23andMe&#8217;s new Volunteer Time Off benefit
Each summer busses packed with exhilarated kids make their way through the windy roads of Fresno county and arrive at the gates of Wonder Valley Ranch. 
As the kids unload, a group of cheerful camp counselors welcomes them with a pleasant overload of smiles, e-hugs, and happy tears. This tradition kicks off their favorite week of the year: Champ Camp!
Run by the <a href="https://www.aarbf.org/">Alisa Ann Ruch Burn Foundation</a> (AARBF), Camp Champ is a week-long stay-away summer camp for child burn survivors, provided at no cost to the families of survivors. 
Campers spend their days playing with their friends, hitting the water slides, crushing the ropes courses, going horseback riding, making crafts, chanting songs, and giggling during evening campfires in a safe environment. They’ve been doing this every summer for 35 years and it requires many devoted volunteers to pull off a perfect week at camp.
“Volunteering at Champ Camp has been the single most rewarding experience of my life,” said Jamie Calnan, Paralegal at 23andMe. 
<div id="attachment_28447" style="width: 310px" class="wp-caption alignright"><img loading="lazy" decoding="async" aria-describedby="caption-attachment-28447" src="https://blog-api.23andme.com/wp-content/uploads/2020/08/Camp-Champ-1.jpg" alt="" class="wp-image-28447 size-medium" width="300" height="225" srcset="https://blogcms.23andme.com/wp-content/uploads/2020/08/Camp-Champ-1.jpg 640w, https://blogcms.23andme.com/wp-content/uploads/2020/08/Camp-Champ-1-300x225.jpg 300w" sizes="auto, (max-width: 300px) 100vw, 300px" />Jamie, third from the left, during the pre-COVID-19 camp days.</div>
<h6>Volunteer Benefit</h6>
Calnan has been volunteering each summer for several years, but this year was different for a number of reasons. It happened as 23andMe was going through an internal initiative to make the company a better place to work. And Calnan, taking her experience at Camp Champ, suggested a new kind of perk — offering employees paid time for volunteering. 
After the initial suggestion, Calnan compiled data on volunteer benefit programs, developed a proposal, presented to 23andMe executive staff, and then anxiously awaited feedback. Shortly after, the proposal was approved, a policy was drafted and the new benefit was shared company-wide. 23andMe’s Volunteer Time Off Policy became effective June 1, 2020, just in time for Champ Camp.
“It was great to see leadership hear my suggestion and support expanding our employee benefits with a policy that allows individuals to get more involved with charity organizations close to their hearts,” said Calnan.
<h6>Rewards of Volunteering</h6>
But volunteering at Champ Camp is no summer vacation. It involves a serious commitment that requires dedication, passion, and a fair amount of time. New counselors go through interviews and training sessions in spring and all counselors report to camp two days before campers arrive, staying through the end of the camp week. This requires volunteers to take between 9-11 days away from home and work each year to volunteer. 
But it’s worth it, says Calnan. 
“It’s a lot of hard work and responsibility but each year tops the previous year,” she said. “Working with children who come from such different cultures, families, and daily lives, who each have their own extremely unique journey is powerful.”
<h6>Summer Camp in the Time of COVID</h6>
Like many organizations, Champ Camp was faced with a very unique challenge due to COVID-19. There was a question about how AARBF could even have a summer camp for the kids. But with the help of Calnan and a group of resourceful volunteers, they were able to create and deliver the world’s first online burn survivor summer camp. One hundred and thirty-seven campers received a “camp in a box,” a special package filled with everything you’d expect from summer camp including snacks, arts and crafts, and plenty of water balloons. Campers participated in online calls, virtual campfires, various other activities, and most importantly, still spent a treasured week with their friends and favorite volunteer counselors on-screen. 
The success of this annual camp would not be possible without such an extraordinary group of volunteers who continue to make a monumental impact on the lives of the campers. 
“It feels great knowing that my employer not only supports my enthusiasm for volunteering with AARBF but now helps provide the extra time,” said Calnan. “Champ Camp Rocks!”
To learn more about the Alisa Ann Ruch Burn Foundation and Champ Camp, visit us online at:<a href="https://www.aarbf.org"> https://www.aarbf.org</a>, or follow us online on Facebook at <a href="https://www.facebook.com/AlisaAnnRuchBurnFoundation/">https://www.facebook.com/AlisaAnnRuchBurnFoundation/</a> or on Instagram at: <a href="https://www.instagram.com/aarbf/">https://www.instagram.com/aarbf/</a>. Donations are gladly being accepted this year to help AARBF keep up their phenomenal work. Donations can be made at <a href="https://www.aarbf.org/usapay/">https://www.aarbf.org/usapay/</a>.

Making Good of Your Time

When you use 23andMe to explore your DNA, you also entrust us with important and personal information about you.
Securing and protecting that data is paramount to 23andMe. We&#8217;re committed to keeping our customers&#8217; trust and providing a secure place where they can explore their DNA, knowing their privacy is protected. That starts with giving our customers a choice in whether their data is shared. We also want our customers to clearly understand how their data might be used if they choose to share it, and by whom.
This post, and the embedded video, is the first in a series of articles intended to give you an overview of how 23andMe protects and secures its customers’ data.  We encourage you to learn even more by reviewing our privacy and security policies.
At 23andMe, we like to say that privacy is in our DNA. It&#8217;s part of everything we do, and in creating policies around privacy and security, we are guided by three fundamental principles:
<ul>
<li>Meaningful &amp; Informed Choice: You decide how your information is used and with whom it is shared.</li>
<li> Setting the Standard for Strong Data Security: Genetic information deserves the highest level of security.</li>
<li>Privacy &amp; Transparency by Design: Protecting customer privacy is about more than just creating policies, it has to be baked into everything you do. Being clear and transparent about these policies is vital for customers to understand how their data is handled and protected.</li>
</ul>



<h6>Meaningful &amp; Informed Choice</h6>
We start with choice because it gives our customers control over whether they share or not, and with whom. Customers control their data and choose how it is used.
23andMe customers have the choice of whether or not they want to participate — and have their de-identified data used — in our innovative research into conditions like Parkinson&#8217;s disease and cancer. They choose whether they want to connect with genetic relatives through our <a href="https://www.23andme.com/dna-ancestry" target="_blank" rel="noopener">DNA Relatives</a> tool, or whether they want to see their health reports. They can choose to have the lab biobank their saliva sample or discard it after it is tested. A customer can always download their data, close their account, have their sample discarded, and data deleted at any time.





 <figure class="wp-block-image size-large is-style-default"><img loading="lazy" decoding="async" width="512" height="286" src="https://blogcms.23andme.com/wp-content/uploads/2020/08/Consent-dashboard.png" alt="" class="wp-image-28430" srcset="https://blogcms.23andme.com/wp-content/uploads/2020/08/Consent-dashboard.png 512w, https://blogcms.23andme.com/wp-content/uploads/2020/08/Consent-dashboard-300x168.png 300w" sizes="auto, (max-width: 512px) 100vw, 512px" /></figure>
 



All this starts at the beginning when a customer first registers. Customers get to decide what they want to share and what they want to see when they begin to explore their genetics using 23andMe. Customers can also change what they share at any time.
The impact of each choice has to be made clear. That&#8217;s why we say &#8220;meaningful choice&#8221;, because we want to ensure that customers understand what sharing means and that they are in control.
So, for example, 23andMe calls out the possibility of learning <a href="https://you.23andme.com/public/unexpected-relationships">unexpected information</a> when opting in to participate in DNA Relatives. 23andMe reminds customers before they elect to view their health reports, that while they might learn information they can use for their health, they might learn also something unexpected. Customers can download their data and share it with third parties, but they are <a href="https://blog.23andme.com/news/how-to-be-careful-with-your-raw-dna-data/">warned about the possible consequences of exercising that choice as well</a>. It&#8217;s their decision. Or if they change their minds, they can opt-out of sharing at any time. It&#8217;s up to them.
And it’s important to understand, there are certain types of sharing we just never do: We don&#8217;t share genetic and self-reported data with employers or insurance companies, or third-party marketers.
<h6>What about 23andMe&#8217;s research?</h6>
Participating in 23andMe&#8217;s research is optional, but a lot of customers — more than 80 percent — opt-in because of the potential this new kind of research has to uncover insights into disease and new treatments. Most of our customers want to participate in this kind of research. It has already led to the publication of <a href="https://www.23andme.com/publications/">more than 150 papers</a> and powers ongoing studies into depression, Parkinson&#8217;s disease, IBD, and fertility. When we make a new finding or publish a paper, we share that information with our customers via blog posts, email, and our Research overview dashboard where customers can see what publications they have contributed to if they’ve consented to research. Most of our customers participate because they want to power the kind of research that could lead to the discovery of new treatments or cures for conditions that affect them or someone they love.





 <figure class="wp-block-image size-large is-style-default"><img loading="lazy" decoding="async" width="1024" height="604" src="https://blogcms.23andme.com/wp-content/uploads/2020/08/Research-image-1024x604.png" alt="" class="wp-image-28431" srcset="https://blogcms.23andme.com/wp-content/uploads/2020/08/Research-image-1024x604.png 1024w, https://blogcms.23andme.com/wp-content/uploads/2020/08/Research-image-300x177.png 300w, https://blogcms.23andme.com/wp-content/uploads/2020/08/Research-image-768x453.png 768w, https://blogcms.23andme.com/wp-content/uploads/2020/08/Research-image-880x519.png 880w, https://blogcms.23andme.com/wp-content/uploads/2020/08/Research-image-1180x696.png 1180w, https://blogcms.23andme.com/wp-content/uploads/2020/08/Research-image.png 1600w" sizes="auto, (max-width: 1024px) 100vw, 1024px" /></figure>
 



We&#8217;ll have a separate post that goes into more detail about our research program, but if you choose to participate in research here&#8217;s what happens with your data:
First, 23andMe de-identifies your genetic data. That means that any personally identifiable information — such as your name, email, and shipping address — are stripped from your genetic information. That means if you opt into research this de-identified data is pooled together with a bigger set of de-identified data from other research participants. Second, access to our research environment is restricted to a select group of authorized personnel. In addition, our scientists look at the data set as a whole, reducing any risk of participant re-identification. You don’t have to participate in research if you don’t want to. Regardless of your participation in 23andMe Research, 23andMe never uses your genetic or individual-level data or shares it without your consent. Those who do opt-in to participate can decide to opt-out at any time. All the research we do is also overseen by an external independent third-party ethical review board (an “IRB”).
See more about our research <a href="https://research.23andme.com/">here</a>, including the more than 150 papers we&#8217;ve published.
<h6>Setting the Standard for Strong Data Security</h6>
23andMe employs software, hardware, and physical security measures to protect our customers&#8217; data. Our customer&#8217;s personally identifiable information is stored separately from genetic data, and with the leading industry standards for security.




<figure class="wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio"><div class="wp-block-embed__wrapper">
<iframe loading="lazy" title="23andMe&#039;s Privacy Practices" width="500" height="281" src="https://www.youtube.com/embed/EW9nDuerQws?feature=oembed" frameborder="0" allow="accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share" referrerpolicy="strict-origin-when-cross-origin" allowfullscreen></iframe>
</div></figure>



We&#8217;re proud of what we are doing to protect our customers&#8217; data.  That work is being recognized. For example, after an extensive security audit, our information security management system received certification under the recognized <a href="https://mediacenter.23andme.com/press-releases/23andme-achieves-iso-iec-270012013-certification/">ISO/IEC 27001:2013</a> standard. Some of the protections we have in place include:
<ul>
<li>the encryption of all sensitive information</li>
<li>limits on access to information based on job function and role</li>
<li>multi-factor authentication</li>
<li>strict least-privileged authorization policies</li>
</ul>
There are many layers to 23andMe robust security systems, but one of the most important is being ever-vigilant. That means having a top-notch security team and keeping employees up-to-date in their security training. It also means conducting ongoing third-party security audits and assessments to ensure we never let our guard down.
The intent is to create a secure place for our customers to explore their DNA because without security, you can&#8217;t have privacy.
<h6>Privacy &amp; Transparency by Design </h6>
Protecting customers&#8217; privacy is about more than just creating policies. It is baked into everything we do.
Since 23andMe&#8217;s founding, the privacy of our customers&#8217; data has been central to what we do. We strive to be transparent so that customers clearly understand how their data is handled. That meant very early on engaging with ethicists, and critics of direct-to-consumer testing. In creating an entirely new research model, 23andMe voluntarily approached a third-party institutional review board (IRB) to ensure our research participants provided informed consent. That requires that we present to customers both the benefits, and risks, of participating in research.
As a pioneer in direct-to-consumer genetic testing, 23andMe created what are now industry standards for handling customers&#8217; genetic information, and obtaining consent. All of the <a href="https://fpf.org/2018/07/31/privacy-best-practices-for-consumer-genetic-testing-services/">industry-wide best practices</a> for consumer genetic testing services published in July 2018 were already part of 23andMe&#8217;s bedrock principles. It&#8217;s why 23andMe was the first consumer genetic testing company to publish a &#8220;<a href="https://www.23andme.com/transparency-report/">transparency report.</a>&#8221; The report records all requests we&#8217;ve ever received from law enforcement for individual customer information.
23andMe has been a pioneer for privacy in genetic testing. We will continue to lead the way to keep the privacy and security of your genetic information paramount.

At 23andMe It Starts with Privacy

Powered by almost 6,000 consented research participants, 23andMe’s Lupus Research study helped our scientists learn more about this difficult to treat and chronic autoimmune disease.
Researchers from 23andMe and our collaborators at Pfizer were able to replicate known <a href="https://www.23andme.com/genetic-science/" target="_blank" rel="noopener">genetic associations</a> for lupus, but, unfortunately, they did not uncover any new genetic associations.
Even though this study is one of the world’s largest genetic studies of lupus to date, it may not have been large enough to detect novel associations. We know genetics plays a significant role in the risk for the condition, and our study found that about 28 percent of those who participated in this research also had a first-degree relative — a parent, child, or sibling — who has lupus.
Beyond that, 23andMe did uncover deeper insights into non-genetic factors and symptoms associated with the disease. <img loading="lazy" decoding="async" class="alignright wp-image-28428 size-medium" src="http://35.88.189.111/wp-content/uploads/2020/08/1st-degree-relative-1-300x224.png" alt="" width="300" height="224" srcset="https://blogcms.23andme.com/wp-content/uploads/2020/08/1st-degree-relative-1-300x224.png 300w, https://blogcms.23andme.com/wp-content/uploads/2020/08/1st-degree-relative-1-1024x763.png 1024w, https://blogcms.23andme.com/wp-content/uploads/2020/08/1st-degree-relative-1-768x572.png 768w, https://blogcms.23andme.com/wp-content/uploads/2020/08/1st-degree-relative-1-880x656.png 880w, https://blogcms.23andme.com/wp-content/uploads/2020/08/1st-degree-relative-1-1180x879.png 1180w, https://blogcms.23andme.com/wp-content/uploads/2020/08/1st-degree-relative-1.png 1600w" sizes="auto, (max-width: 300px) 100vw, 300px" />
“While new genetic factors were not uncovered, the information from the surveys provide insight, in some cases validating what we hear anecdotally,” said Diane Gross, National Director of Advocacy and Programs, <a href="https://www.lupusresearch.org/">Lupus Research Alliance (LRA).</a>
A non-profit, LRA, helps fund innovative lupus research to improve diagnosis and treatment.
“This information should be very helpful to people with lupus and their support networks,” said Gross. “While every case of lupus is different, it is important for people to understand they are not alone. It can also be useful for healthcare providers to understand some of the most common symptoms people experience so when a patient shows up in their office reporting these symptoms, they think about lupus. Early diagnosis and treatment are important to slow the pace of the damage from the disease”
Now that 23andMe’s study is closed, our researchers wanted to share some of what we’ve learned.
<h6>Important Demographics</h6>
The size of the study meant that a much larger number of people from underrepresented populations participated than in previous studies.<img loading="lazy" decoding="async" class="alignright wp-image-28441 size-medium" src="http://35.88.189.111/wp-content/uploads/2020/08/race-300x195.png" alt="" width="300" height="195" srcset="https://blogcms.23andme.com/wp-content/uploads/2020/08/race-300x195.png 300w, https://blogcms.23andme.com/wp-content/uploads/2020/08/race-1024x667.png 1024w, https://blogcms.23andme.com/wp-content/uploads/2020/08/race-768x500.png 768w, https://blogcms.23andme.com/wp-content/uploads/2020/08/race-880x573.png 880w, https://blogcms.23andme.com/wp-content/uploads/2020/08/race-1180x769.png 1180w, https://blogcms.23andme.com/wp-content/uploads/2020/08/race.png 2038w" sizes="auto, (max-width: 300px) 100vw, 300px" />
Lupus disproportionately impacts women of color. In fact, Blacks, Latinos, and Asians are two to three times more likely to develop lupus than white women, according to the<a href="https://www.lupus.org/resources/lupus-facts-and-statistics"> Lupus Foundation of America</a>. Most of 23andMe’s Lupus study participants are women, and about 9 percent are Black, about 21 percent are multi-racial, just under 2 percent are Asian and about 68 percent are white.
While the study isn’t fully reflective of the population with lupus, the initiative includes the largest number of Blacks in a genetic study of lupus ever conducted.
<h6>Difficult to Diagnose</h6>
One of the many confounding aspects of the disease is that it can impact almost any part of the body — the skin, joints, or various organs. The body’s own immune system attacks tissues and organs, and that, in turn, results in inflammation. <img loading="lazy" decoding="async" class="alignright wp-image-28438 size-medium" src="http://35.88.189.111/wp-content/uploads/2020/08/diagnosis-300x195.png" alt="" width="300" height="195" srcset="https://blogcms.23andme.com/wp-content/uploads/2020/08/diagnosis-300x195.png 300w, https://blogcms.23andme.com/wp-content/uploads/2020/08/diagnosis-1024x667.png 1024w, https://blogcms.23andme.com/wp-content/uploads/2020/08/diagnosis-768x500.png 768w, https://blogcms.23andme.com/wp-content/uploads/2020/08/diagnosis-880x573.png 880w, https://blogcms.23andme.com/wp-content/uploads/2020/08/diagnosis-1180x769.png 1180w, https://blogcms.23andme.com/wp-content/uploads/2020/08/diagnosis.png 2038w" sizes="auto, (max-width: 300px) 100vw, 300px" />
This varied aspect of the disease may also explain why it was difficult to identify any new genetic associations. It is possible that a much larger cohort than 5,000 people is needed to find additional genetic associations for the disease. In addition, because lupus presents in so many different ways — often with symptoms that are similar to other diseases — it is difficult to diagnose.
That certainly was seen in our study.
Participants reported that on average it took about six years from when they first started experiencing symptoms to the first diagnosis of lupus by a doctor.  This can be incredibly frustrating for those struggling with symptoms, but unsure of what is causing them.
<h6>Devastating Impacts</h6>
Beyond how long it can take to diagnose the disease, lupus takes an incredible toll on one’s body, which we also saw in the data.

 <figure class="wp-block-image size-large is-style-default"><img loading="lazy" decoding="async" width="1024" height="710" src="https://blogcms.23andme.com/wp-content/uploads/2020/08/skin_conditions-1-1024x710.png" alt="" class="wp-image-28442" srcset="https://blogcms.23andme.com/wp-content/uploads/2020/08/skin_conditions-1-1024x710.png 1024w, https://blogcms.23andme.com/wp-content/uploads/2020/08/skin_conditions-1-300x208.png 300w, https://blogcms.23andme.com/wp-content/uploads/2020/08/skin_conditions-1-768x533.png 768w, https://blogcms.23andme.com/wp-content/uploads/2020/08/skin_conditions-1-880x611.png 880w, https://blogcms.23andme.com/wp-content/uploads/2020/08/skin_conditions-1-1180x819.png 1180w, https://blogcms.23andme.com/wp-content/uploads/2020/08/skin_conditions-1.png 2038w" sizes="auto, (max-width: 1024px) 100vw, 1024px" /></figure>
 
Almost all our participants reported numerous different symptoms, ranging from loss of hair, sores in the mouth and nose, and rashes or blotching of the skin. Two-thirds of participants had sores in their mouth or nose, and a similar percentage reported having skin reactions after being in the sun. About 60 percent of participants had rashes on their cheeks, and a third saw blisters or bullae on their skin. Finally, 22 percent reported that lupus left them with scarring lesions.

 <figure class="wp-block-image size-large is-style-default"><img loading="lazy" decoding="async" width="1024" height="710" src="https://blogcms.23andme.com/wp-content/uploads/2020/08/body-1024x710.png" alt="" class="wp-image-28440" srcset="https://blogcms.23andme.com/wp-content/uploads/2020/08/body-1024x710.png 1024w, https://blogcms.23andme.com/wp-content/uploads/2020/08/body-300x208.png 300w, https://blogcms.23andme.com/wp-content/uploads/2020/08/body-768x533.png 768w, https://blogcms.23andme.com/wp-content/uploads/2020/08/body-880x611.png 880w, https://blogcms.23andme.com/wp-content/uploads/2020/08/body-1180x819.png 1180w, https://blogcms.23andme.com/wp-content/uploads/2020/08/body.png 2038w" sizes="auto, (max-width: 1024px) 100vw, 1024px" /></figure>
 <img loading="lazy" decoding="async" class="alignright wp-image-28422 size-medium" src="http://35.88.189.111/wp-content/uploads/2020/08/06232016_lupusQ2_OldDot_V2-296x300.png" alt="" width="296" height="300" srcset="https://blogcms.23andme.com/wp-content/uploads/2020/08/06232016_lupusQ2_OldDot_V2-296x300.png 296w, https://blogcms.23andme.com/wp-content/uploads/2020/08/06232016_lupusQ2_OldDot_V2.png 507w" sizes="auto, (max-width: 296px) 100vw, 296px" />
Those were just the skin-related symptoms. The vast majority of those in our study, 87 percent, experienced joint or muscle pain when first diagnosed with lupus. 77 percent experienced joint or muscle pain during the duration of the study.
Illustrating just how serious this illness is, just under half of those in the survey, 49 percent, said they experienced a flare-up of disease-related symptoms in the last year. Known within the lupus community simply as “flares,” only 5 percent of participants reported no flares during the previous 12 months.
Taken together these symptoms are serious enough that 43 percent of our participants reported that <img loading="lazy" decoding="async" class="alignright wp-image-28416 size-medium" src="http://35.88.189.111/wp-content/uploads/2020/08/number-of-flares-225x300.png" alt="" width="225" height="300" srcset="https://blogcms.23andme.com/wp-content/uploads/2020/08/number-of-flares-225x300.png 225w, https://blogcms.23andme.com/wp-content/uploads/2020/08/number-of-flares.png 384w" sizes="auto, (max-width: 225px) 100vw, 225px" />their lupus-related symptoms required hospitalization at some point. Many had infections serious enough to require treatment with antibiotics, with about 28 percent reporting getting an antibiotic injection and about 27 percent receiving such treatment intravenously.
These symptoms also make it harder to day-in-and-day-out, meaning that 71 percent of participants said lupus impacted their ability to work.
<h6>Lupus and Other Conditions </h6>
Simply dealing with lupus and its many symptoms can also undercut one’s health in other ways.
Our data show a significant association between those diagnosed with lupus and poor sleep quality, for instance, which has its own impact on one’s health and well-being. About 44 percent said that along with lupus they’d been diagnosed with high blood pressure. About 30% said they’d been diagnosed with rheumatoid arthritis at some point.

 <figure class="wp-block-image size-large is-style-default"><img loading="lazy" decoding="async" width="512" height="377" src="https://blogcms.23andme.com/wp-content/uploads/2020/08/other-conditions.png" alt="" class="wp-image-28423" srcset="https://blogcms.23andme.com/wp-content/uploads/2020/08/other-conditions.png 512w, https://blogcms.23andme.com/wp-content/uploads/2020/08/other-conditions-300x221.png 300w" sizes="auto, (max-width: 512px) 100vw, 512px" /></figure>
 
And most telling in how devastating lupus can be, 27 percent of our Lupus Research Study participants, reported that they had been diagnosed with depression or major depressive disorder since being diagnosed with lupus. In fact, lupus patients are at four times greater risk of having major depression when compared to those without the disease among 23andMe research participants.
<h6>What’s Next?</h6>
We started this work more than four years ago with the hope that it could aid those searching for better ways to treat lupus. This study shows that there is still much to be done to find new treatments. We hope the information shared in this post is useful to all those interested in learning more about the experience of those with lupus. The more we understand about not just the genetics of lupus but also the differences in how the disease develops in different people, the closer we will get to understanding how best to treat it.
Thank you to all those who participated in 23andMe’s Lupus Research study, and who made this work possible.

New Insights from Lupus Research

This week, the U.S. Food and Drug Administration (FDA) granted 23andMe a 510(k) clearance for a <a href="https://www.23andme.com/test-info/pharmacogenetics/">pharmacogenetics report</a> on two medications, clopidogrel, prescribed for certain heart conditions, and citalopram, which is prescribed for depression.
<h6>CYP2C19</h6>
The decision this week modifies the labeling of the previously authorized <a href="https://www.23andme.com/topics/pharmacogenetics/cyp2c19/">CYP2C19 Drug Metabolism</a> report which was granted FDA authorization <a href="https://blog.23andme.com/news/23andme-granted-the-first-and-only-fda-authorization-for-direct-to-consumer-pharmacogenetics-reports/">in 2018</a>. The new 510(k) clearance for the pharmacogenetics report for CYP2C19 modifies the labeling to remove the need for confirmatory testing and allows 23andMe to report interpretive drug information for two medications.
“This impactful pharmacogenetics information can now be delivered without the need for confirmatory testing, a testament to the clinical validity of 23andMe results,” said Kathy Hibbs, 23andMe Chief Legal, and Regulatory Officer. “23andMe remains the only company with direct-to-consumer pharmacogenetic <a href="https://blog.23andme.com/articles/fda-clearance">reports cleared by the FDA</a>. Now that we have pioneered a regulatory path, we believe all companies marketing pharmacogenetic reports should go through the FDA review process to ensure the safety and effectiveness of their tests.”
<h6>Validation</h6>
The clearance follows what was a <a href="https://blog.23andme.com/articles/move-toward-fda-clearance">rigorous analytical validation process</a> necessary to meet FDA requirements. This process included method comparison studies with expanded sample collection activities in order to increase the likelihood of obtaining certain rare allele combinations. This further mitigated the risk of false-positive or false-negative results. Accuracy exceeded 99 percent agreement with Sanger sequencing, which is considered the clinical ‘gold standard’ for testing.
Besides analytical validity, both 23andMe and the FDA also want to ensure that consumers understand these reports and use them properly, which includes adhering to their current medications and consulting with their healthcare providers. Based on 23andMe&#8217;s previous consumer comprehension studies, over 95 percent of users understood that they should not use the report to make any changes to treatment without consulting their doctor.
In its clearance decision, the FDA found that:  &#8220;As presented, the modified pharmacogenetic report for CYP2C19, without the confirmatory testing requirement, is a safe and effective consumer product that can safely and effectively assist customers with certain CYP2C19 genotypes in understanding how their body may respond to certain medications and encourage informed conversations with their healthcare provider.&#8221;
<h6>Clopidogrel</h6>
The report looks at two commonly prescribed medications. <a href="https://blog.23andme.com/articles/the-debate-over-clopidogrel-continues">Clopidogrel</a> is used to prevent serious or life-threatening blood clots in people who have had a stroke, heart attack, or severe chest pain.<a id="f1" href="#a1">[1]</a> Citalopram is used to treat depression and is in a class of antidepressants called selective serotonin reuptake inhibitors (SSRIs).<a id="f2" href="#a2">[2]</a> Individuals with certain genetic variants in the CYP2C19 gene may metabolize these medications differently and experience reduced efficacy and/or increased chances of side effects from these medications.
People with certain genetic variants who are taking clopidogrel or citalopram have a higher risk of serious adverse events, such as life-threatening cardiac events.<a id="f3" href="#a3">[3]</a> <a id="f4" href="#a4">[4] </a> This clearance allows 23andMe to give consumers information to share with their doctors through accurate variant detection and clinically <a href="https://blog.23andme.com/articles/fda-clearance">validated pharmacogenomic associations</a>, consistent with the FDA-approved drug labels for both of these medications.
These new medication response reports may be particularly impactful because of how common CYP2C19 variants are. Looking at data from more than 2 million 23andMe customers from diverse ethnic backgrounds who consented to participate in research, 23andMe scientists recently found that more than half had at least one CYP2C19 variant that could alter how their bodies metabolize clopidogrel and citalopram. 
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<h6>Footnotes</h6>
<a id="f1" href="#a1">[1]</a> <a href="https://medlineplus.gov/druginfo/meds/a601040.html" target="_blank" rel="noopener noreferrer">https://medlineplus.gov/druginfo/meds/a601040.html</a> (MedlinePlus, National Institutes of Health resource on medication)
<a id="f2" href="#a2">[2]</a> <a href="https://medlineplus.gov/druginfo/meds/a699001.html" target="_blank" rel="noopener noreferrer">https://medlineplus.gov/druginfo/meds/a699001.html</a> (MedlinePlus, National Institutes of Health resource on medication)
<a id="f3" href="#a3">[3]</a> <a href="https://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?setid=0d010775-1160-4b2e-a928-563a02edd191">https://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?setid=0d010775-1160-4b2e-a928-563a02edd191</a> (DailyMed, National Library of Medicine, clopidogrel)
<a id="f4" href="#a4">[4]</a> <a href="https://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?setid=cf7b6823-108b-ebff-8f41-91f8b8325e3a" target="_blank" rel="noopener noreferrer">https://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?setid=cf7b6823-108b-ebff-8f41-91f8b8325e3a</a> (DailyMed, National Library of Medicine, citalopram)

FDA Clearance for 23andMe Drug Interaction Report

By Daniella Coker, MPH, Scientist at 23andMe*
23andMe’s research into COVID-19 reveals that amid the pandemic between April and June, adherence to social distancing measures waned, echoing findings from other researchers. But in July as COVID cases spiked, more people heeded public health recommendations about distancing.
After taking into consideration a range of factors, certain personality types are more (or less) likely to practice social distancing.
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• Highly extraverted people are less likely to practice social distancing.
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• People who are highly agreeable or open to experience are more likely to practice social distancing.
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• Adherence to social distancing decreased between April and June but has since begun to increase.
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• Older people were more likely than younger people to practice social distancing.
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These are just a couple of the dozens of new findings 23andMe scientists have discovered looking at data from more than 1,000,000 people who are participating in <a href="https://you.23andme.com/covid19-study/">23andMe’s COVID-19 research study.</a> Since the study’s launch in April, 23andMe has released a range of findings from the data, including that <a href="https://blog.23andme.com/23andme-research/blood-type-and-covid-19/">O blood type appears</a> to be protective against susceptibility for COVID-19 and that <a href="https://blog.23andme.com/23andme-research/activity-changes-during-covid/">physical activity has decreased</a> since shelter-in-place orders began.
23andMe’s COVID-19 research study presented an opportunity to also understand social distancing behavior within our research participants &#8211; Who is social distancing? Where are people social distancing more or less? How has adherence changed over the course of this pandemic?
<h6>Geography and Social Distancing</h6>
Adherence differs greatly from state to state, but between April and June in most states, adherence to social distancing decreased. Adherence was generally lowest in Mountain states and Southern states, where the proportion of study participants who practiced social distancing decreased from 84-89 percent in April to as low as 78 percent June. Even in states on the West Coast and in the Northeast, where compliance with social distancing was among the highest in the country, compliance decreased from 91-93 percent in April to approximately 88 percent by June.
However, our data shows that between June and July, adherence to social distancing began to increase across the country, potentially in response to the resurgence of infections during this time.

 <figure class="wp-block-image size-large is-style-default"><img loading="lazy" decoding="async" width="512" height="288" src="https://blogcms.23andme.com/wp-content/uploads/2020/07/Map-social-distancing.png" alt="" class="wp-image-28394" srcset="https://blogcms.23andme.com/wp-content/uploads/2020/07/Map-social-distancing.png 512w, https://blogcms.23andme.com/wp-content/uploads/2020/07/Map-social-distancing-300x169.png 300w" sizes="auto, (max-width: 512px) 100vw, 512px" /></figure>
 
<h6></h6>
<h6>Age and Social Distancing</h6>
Beyond geography, 23andMe data showed that older people, those over 50, were generally more likely than younger people to practice social distancing. In fact, for nearly every 10-year increment in age (e.g., 20-somethings, 30-somethings, etc.), there was an increase in the proportion of individuals who practiced social distancing.
It was also found that in almost all age groups, adherence to social distancing fell from April to June, only to jump back up in July. Yet, even in the youngest groups, the majority of people said they adhered to social distancing rules.

 <figure class="wp-block-image size-large is-style-default"><img loading="lazy" decoding="async" width="512" height="278" src="https://blogcms.23andme.com/wp-content/uploads/2020/07/social-distancing-and-age.png" alt="" class="wp-image-28395" srcset="https://blogcms.23andme.com/wp-content/uploads/2020/07/social-distancing-and-age.png 512w, https://blogcms.23andme.com/wp-content/uploads/2020/07/social-distancing-and-age-300x163.png 300w" sizes="auto, (max-width: 512px) 100vw, 512px" /></figure>
 
<h6>Personality and Social Distancing</h6>
Personality traits appear to play a role in adherence. Even after taking into account age, sex, essential worker status, relative zipcode density, and other factors, individuals who are gregarious, adventurous, prone to anger, and/or, friendly were less likely to adhere to social distancing. At the same time, those who were more liberal, artistic, sympathetic, and altruistic were more likely to socially distance. These findings are based on the responses of over 100,000 COVID-19 research participants who had also completed 23andMe survey questions that help assess character traits.
These and other traits can be grouped under one of the <a href="https://www.psychologytoday.com/us/basics/big-5-personality-traits">“Big Five” personality traits</a> used in the field of psychology. 

 <figure class="wp-block-image size-large is-style-default"><img loading="lazy" decoding="async" width="512" height="338" src="https://blogcms.23andme.com/wp-content/uploads/2020/07/The-big-five.png" alt="" class="wp-image-28396" srcset="https://blogcms.23andme.com/wp-content/uploads/2020/07/The-big-five.png 512w, https://blogcms.23andme.com/wp-content/uploads/2020/07/The-big-five-300x198.png 300w" sizes="auto, (max-width: 512px) 100vw, 512px" /></figure>
 
The above figure is based on Psychology Today’s <a href="https://www.psychologytoday.com/us/basics/big-5-personality-traits">“Big 5 Personality Traits”</a>
Another way to look at these findings is that highly extraverted people were less likely to socially distance, whereas highly open or agreeable people were more likely to adhere.&nbsp; 1,2 

 <figure class="wp-block-image size-large is-style-default"><img loading="lazy" decoding="async" width="512" height="312" src="https://blogcms.23andme.com/wp-content/uploads/2020/07/personality-traits-less-likely.png" alt="" class="wp-image-28397" srcset="https://blogcms.23andme.com/wp-content/uploads/2020/07/personality-traits-less-likely.png 512w, https://blogcms.23andme.com/wp-content/uploads/2020/07/personality-traits-less-likely-300x183.png 300w" sizes="auto, (max-width: 512px) 100vw, 512px" /></figure>
 
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<h6>What does personality have to do with it?</h6>
There are a couple of possible <a href="https://www.marketwatch.com/story/personality-traits-explain-whether-you-follow-or-flout-coronavirus-mask-wearing-and-social-distancing-guidelines-11594822706">explanations</a> for these specific findings.
The mandates for social distancing have upended many aspects of our lives, including our ability to physically interact with family and friends. <a href="https://www.psychologytoday.com/us/basics/extroversion">Extraverts are typically highly sociable individuals who “recharge” from being with others</a>; their very nature is at odds with the demands of social distancing, and therefore they may be finding adherence to be particularly challenging. A study in <a href="https://www.scielo.br/scielo.php?script=sci_arttext&amp;pid=S2237-60892020005005201">Brazil</a> similarly found that during the first month of the pandemic, higher scores for extraversion were associated with less social distancing.
A couple facets of neuroticism, anger, and vulnerability, were also among those personality traits associated with less social distancing. Research has shown that highly neurotic people tend to use <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2792076/">more emotion-focused</a>, rather than problem-focused, approaches for coping with stress. Therefore, perhaps individuals who are prone to anger or feelings of vulnerability are more likely to respond to the stress of the pandemic emotionally, such as by <a href="https://www.health.com/condition/infectious-diseases/coronavirus/why-some-people-wont-practice-social-distancing">tuning out or defying guidance</a>. <code> </code>
Highly agreeable people tend to focus on the <a href="https://www.psychologytoday.com/us/basics/agreeableness">needs of others</a>. Much of the messaging around the pandemic has relied on a sense of community (e.g., “Stay Home. Save Lives”), so perhaps this tone of social responsibility has resonated more closely with this group of people. As for those who are highly open, it may be their tendency for being more receptive to new ideas and comfortable in unfamiliar circumstances that has contributed to an ability to adapt to this new experience of social distancing.
Other studies that have examined associations between personality and social distancing during the COVID-19 pandemic have produced similar results. <a href="https://psyarxiv.com/chgkn/">Blagov’s</a> study of U.S adults found that agreeableness and conscientiousness predicted endorsement of social distancing. In addition, a study of <a href="https://www.researchgate.net/publication/340104486_Individual_differences_in_accepting_personal_restrictions_to_fight_the_COVID-19_pandemic_Results_from_a_Danish_adult_sample">Danish</a> participants showed that people who are highly emotional &#8211; a facet of openness &#8211; were more likely to accept personal restrictions to protect others from the virus.
Social distancing has remained one of society’s primary tools to help slow the spread of COVID-19. Analysis of 23andMe’s more than 1,000,000 COVID-19 study participants has shown that while a majority practice social distancing, differences persist when adherence is examined by age, time, geography, and even personality. Understanding these patterns of behavior can provide insight on how to address social distancing with different segments of the population.
*23andMe’s COVID-19 study is made possible through the participation of more than a million of our customers who consented to answer survey questions for this research. But this study also involves the hard work of a core team of our health researchers, program/product managers, data scientists, engineers and geneticists. Among them are: Michelle Agee, Amanda Altman, Stella Aslibekyan, Adam Auton, Jess Bielenberg, Adrian Chubb, Daniella Coker, Raffaello d’Amore, Scott Dvorak, Alison Fitch, Scott Hadly, Pooja Gandhi, Andy Kill, Trung Le, John Matthews, Jey McCreight, Taylor Morrow, Sungmin Park, Jeff Pollard, Anjali Shastri, Janie Shelton, Teresa Filshtein Sonmez, Jason Tan, Lindsey Tran, Cat Weldon, Chelsea Ye, Yiwen Zheng
**These analyses were limited to 18+-year-old participants in the United States.

Social Distancing during COVID-19 — Who, When, Where

23andMe recently launched a genetic study of<a href="https://www.23andme.com/idiopathic-pulmonary-fibrosis/"> Idiopathic Pulmonary Fibrosis (IPF)</a>, a rare disease that results in scarring of the lungs and for which there is currently no cure.
<h6>Studying the Genetics of IPF</h6>
The hope is that this study will help generate genetic information offering new insight and potential treatments. This disease itself is particularly insidious. It results in scarring of the lungs (fibrosis), which in turn increasingly hampers the ability of the lungs to transport oxygen to other organs. This makes it difficult for those suffering from the disease to catch a breath.
This is the first genetic study 23andMe researchers have undertaken on a rare disease. A disease is deemed “rare” if it affects<a href="https://rarediseases.info.nih.gov/diseases/pages/31/faqs-about-rare-diseases"> fewer than 200,000</a> people in the United States. Often because a rare disease affects fewer people there is less market incentive to develop a treatment for these conditions. While individually these conditions are uncommon, there are more than 7,000 rare diseases that have been identified which impact an estimated 30 million people in the United States, according to the NIH. Research on these conditions has been historically limited and slow.
Like many rare diseases, genetics likely plays an important role in why some people develop IPF, and this is where the 23andMe research model could help. Through our study, people living with IPF can provide genetic information and invaluable insight that can bring us closer to future treatment discovery.
<h6>Eligibility</h6>
For 23andMe’s Idiopathic Pulmonary Fibrosis<a href="https://www.23andme.com/idiopathic-pulmonary-fibrosis/"> research</a> our goal is to enroll 1,000 individuals with IPF. To participate in this study you must:
<ul>
<li>Have been diagnosed with IPF or Hermansky-Pudlak syndrome (HPS)*</li>
<li>Are 18+ years old</li>
<li>Live in the US</li>
</ul>
If you or someone you know is interested in learning about 23andMe’s study, click<a href="https://www.23andme.com/idiopathic-pulmonary-fibrosis/"> here</a>.
*We are including participants with Hermansky-Pudlak syndrome in this study because the pulmonary fibrosis that can develop in these individuals is very similar to IPF. If a new treatment for IPF is developed as a result of this research, this treatment may also help individuals with Hermansky-Pudlak Syndrome.
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Illustration for Idiopathic Pulmonary Fibrosis

23andMe to Study Idiopathic Pulmonary Fibrosis

By Janie F. Shelton, Ph.D., MPH, Senior Scientist at 23andMe*
Black people and Latinos are disproportionately affected by COVID-19, according to new data from scientists at 23andMe.
23andMe’s data shows that African Americans, who tested positive for COVID-19, were almost twice as likely as whites to be hospitalized. Latinos had a slightly higher risk for hospitalization compared to whites.  When adjusted for age, sex, income, and other underlying health conditions, Black people are still 80 percent more likely to be hospitalized for COVID-19 than whites.
<h6>Stark Differences</h6>
Even after adjusting for those factors, 23andMe scientists still found stark disparities in both susceptibility and severity from the virus.

 <figure class="wp-block-image size-large is-style-default"><img loading="lazy" decoding="async" width="512" height="317" src="https://blogcms.23andme.com/wp-content/uploads/2020/08/Hospitalizations.jpg" alt="" class="wp-image-28387" srcset="https://blogcms.23andme.com/wp-content/uploads/2020/08/Hospitalizations.jpg 512w, https://blogcms.23andme.com/wp-content/uploads/2020/08/Hospitalizations-300x186.jpg 300w" sizes="auto, (max-width: 512px) 100vw, 512px" /></figure>
 
In other words, race and ethnicity still stand out as a significant risk factor for infection with COVID-19 as well as for the most severe symptoms that require hospitalization. The preliminary data on people of other underrepresented communities also raises concerns, but without more research participants of different racial and ethnic backgrounds, in particular of Asian descent,  our scientists are unable to make robust statistical findings.
<h6>Replicating other Studies</h6>
23andMe’s data<a href="https://www.nytimes.com/interactive/2020/07/05/us/coronavirus-latinos-african-americans-cdc-data.html"> replicates findings</a> from the US Centers for Disease Control and Prevention (CDC) showing that not only are Black people and Latinos more likely to contract the virus, they are also much more likely to end up in the hospital across all age groups.

 <figure class="wp-block-image size-large is-style-default"><img loading="lazy" decoding="async" width="1024" height="635" src="https://blogcms.23andme.com/wp-content/uploads/2020/08/graphic-update-grouped-by-age-1024x635.png" alt="" class="wp-image-28391" srcset="https://blogcms.23andme.com/wp-content/uploads/2020/08/graphic-update-grouped-by-age-1024x635.png 1024w, https://blogcms.23andme.com/wp-content/uploads/2020/08/graphic-update-grouped-by-age-300x186.png 300w, https://blogcms.23andme.com/wp-content/uploads/2020/08/graphic-update-grouped-by-age-768x476.png 768w, https://blogcms.23andme.com/wp-content/uploads/2020/08/graphic-update-grouped-by-age-880x545.png 880w, https://blogcms.23andme.com/wp-content/uploads/2020/08/graphic-update-grouped-by-age-1180x731.png 1180w, https://blogcms.23andme.com/wp-content/uploads/2020/08/graphic-update-grouped-by-age.png 1252w" sizes="auto, (max-width: 1024px) 100vw, 1024px" /></figure>
 
These findings add another stark reminder of a much larger issue — the glaring disparities in health care, health care access, and health outcomes within the United States for Black people, Latinos, and other under-represented racial and ethnic groups. Thus far, there is no data to indicate that there are genetic variants among these populations to explain these differences in outcomes.
<h6>23andMe&#8217;s COVID-19 Research Study</h6>
The preliminary findings are among dozens of new insights researchers have uncovered as part of<a href="https://you.23andme.com/covid19-study/"> 23andMe’s COVID-19 research study</a>. 23andMe scientists are drawing data from more than one million people participating in the study, including more than 20,000 who have been diagnosed with or tested positive for the virus, and more than 1,000 who have been hospitalized. It is among the largest genetic study of COVID-19 in the world.
Since the study’s launch in April, 23andMe has released a range of new insights about the virus, including that<a href="https://blog.23andme.com/23andme-research/blood-type-and-covid-19/"> O blood type appears</a> to be protective against susceptibility for COVID-19. The study also found genetic variants that appeared to be protective. It is worth noting that African American and Latinx populations are more likely to have Type O blood than Europeans, and despite that, infection risk and hospitalization risk are higher in those groups.

 <figure class="wp-block-image size-large is-style-default"><img loading="lazy" decoding="async" width="512" height="317" src="https://blogcms.23andme.com/wp-content/uploads/2020/08/covid-age-adjusted.jpg" alt="" class="wp-image-28389" srcset="https://blogcms.23andme.com/wp-content/uploads/2020/08/covid-age-adjusted.jpg 512w, https://blogcms.23andme.com/wp-content/uploads/2020/08/covid-age-adjusted-300x186.jpg 300w" sizes="auto, (max-width: 512px) 100vw, 512px" /></figure>
 
<h6>More COVID-Related Findings</h6>
Although the study is focused on genetic factors underlying susceptibility and severity, the researchers are also finding interesting non-genetic factors as well as other impacts from the pandemic. For example, 23andMe recently reported data on how<a href="https://blog.23andme.com/23andme-research/activity-changes-during-covid/"> physical activity has decreased</a> since shelter-in-place orders began. And our scientists have found how certain personality traits influence people’s adherence to social distancing recommendations.
Together, these data are helping scientists understand the many dimensions to why the virus affects people so differently. The hope is that this data may offer insights for combating the pandemic.
But data on racial and ethnic disparities from 23andMe scientists as well as other researchers sheds a light on racial disparities in the impact of COVID-19. This is also more impetus to the broader discussions around the need for more equity in health care. Recently scientists from the<a href="https://www.nationalacademies.org/news/2020/07/covid-19-and-black-communities"> National Academy of Sciences</a> held a workshop looking at what might be underlying the disproportionate impact the virus has had on Black communities, as well as the best approaches to remedy that.
One recent initiative, called the <a href="https://www.hhs.gov/about/news/2020/06/23/hhs-announces-partnership-morehouse-school-medicine-fight-covid-19-racial-ethnic-minority.html">National Infrastructure for Mitigating the Impact of COVID-19 within Racial and Ethnic Minority Communities</a>, coordinated by the Morehouse School of Medicine, aims to improve communication around the condition among underrepresented communities as well as ensure access for those communities when a vaccine or other treatments become available.
*23andMe’s COVID-19 study is made possible through the participation of more than a million of our customers in the U.S. who consented to answer survey questions for this research. This study also involves the hard work of a core team of our health researchers, program/product managers, data scientists, engineers, and geneticists. Among them are: Michelle Agee, Amanda Altman, Stella Aslibekyan, Adam Auton, Jess Bielenberg, Adrian Chubb, Daniella Coker, Raffaello d’Amore, Scott Dvorak, Alison Fitch, Scott Hadly, Pooja Gandhi, Andy Kill, Trung Le, John Matthews, Jennifer McCreight, Taylor Morrow, Sungmin Park, Jeff Pollard, Anjali Shastri, Janie Shelton, Teresa Filshtein Sonmez, Jason Tan, Lindsey Tran, Cat Weldon, Chelsea Ye, Yiwen Zheng.

A logo for 23andMe's COVID-19 Research Study

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