New research published this month adds to a growing list of empirical evidence that people find value in health information gleaned from direct-to-consumer <a href="https://www.23andme.com/" target="_blank" rel="noopener">genetic testing</a>.
The 23andMe study, published in the journal Molecular Genetics &amp; Genomic Medicine, found that direct-to-consumer testing can lead people to engage in critical conversations with their healthcare providers. In some cases, the results from their reports lead people to make behavioral changes to help lower their disease risk.
&#8220;Most study participants reported that knowing their genetic risk was an advantage,&#8221; said co-lead author Sarah L. Elson, Ph.D., and a 23andMe senior research program manager and senior scientist. &#8220;Many of those who learned about their risk did what you would hope. They either talked to their doctor or made lifestyle changes to help lower their risk.&#8221; <img loading="lazy" decoding="async" src="https://blog-api.23andme.com/wp-content/uploads/2008/09/bloodclot-300x223.jpg" alt="Blood cells clotting" class="alignright size-medium wp-image-1400" width="300" height="223" srcset="https://blogcms.23andme.com/wp-content/uploads/2008/09/bloodclot-300x223.jpg 300w, https://blogcms.23andme.com/wp-content/uploads/2008/09/bloodclot.jpg 350w" sizes="auto, (max-width: 300px) 100vw, 300px" />
<h6>The Impact of Direct-to-Consumer Genetic Testing</h6>
There have been anecdotal stories from customers about how their results positively impacted their lives, but the study adds data from a large cohort of customers, Elson said.
The study looked at how more than 2,000 people reacted to 23andMe&#8217;s Hereditary Thrombophilia Genetic Health Risk report.* (At the time the name of the report was Inherited Thrombophilia (Factor V Leiden-and Prothrombin-Related.) The participants responded to questions in two different online surveys consisting of just over 100 questions. 
They were asked about their perceptions of venous thromboembolism (VTE) risk, whether they discussed their results with healthcare providers, what if any recommendations they received, what actions they took to manage risk, their emotional responses to receiving risk results, and their perceived value of the information. The report looks at the two most common genetic risk factors for hereditary thrombophilia, more generally known as venous thromboembolism (VTE). VTEs are characterized by either deep vein thrombosis, clots that typically form in the legs, or pulmonary embolisms when clots travel into the lungs. Both are very serious and can lead to long term problems, and in some cases, even death.
<h6>The Prevalence of  VTEs</h6>
In the United States alone, there are between 300,000–600,000 cases of VTEs each year. About a quarter of those with VTEs have one of the two variants tested by 23andMe. These two variants are the Factor V Leiden variant in the F5 gene and the Prothrombin G20210A variant in the F2 gene. This study looked at how people reacted to learning whether they had one of those variants, as reported by 23andMe.
A little more than half of those in this study had one of these 2 variants associated with a higher risk for VTE. Ninety percent of those with a high-risk variant had never been clinically tested for Factor V Leiden or the F2 gene variant. After testing, a majority of consumers in the study — 78 percent of those with one of the risk variants and 58 percent without one of the variants — said that it was advantageous to have the test&#8217;s information. Just under half used that information as the impetus for a discussion with their healthcare provider. 
A majority of participants in the study who learned they had a higher than average genetic risk, found personal utility in receiving that information. The study also found that about 30 percent of the research participants made positive behavioral changes to control their risk, such as exercising more, after learning about their risk. 
<h6>A Growing Body of Research </h6>
The research is the latest in what has been a series of peer-reviewed studies over the last decade, explicitly looking at the impact of direct-to-consumer genetic testing. The best known of these is the <a href="https://www.genomes2people.org/research/pgen/">Impact of Personal Genomics Study</a>, known as the PGen study. The study was led by scientists at the Broad Institute and Harvard Medical School. That study and others have tackled several central questions around direct-to-consumer testing. Among those questions are: Can people understand this information? How do they use their test results? Do they use this information to <a href="https://www.genomes2people.org/wp-content/uploads/2018/07/20170502_PGen_BMCMedicalGenomics_Nielsen_DietExerciseDTC.pdf">manage their health?</a> Does testing impact their level of knowledge or <a href="https://blog.23andme.com/23andme-research/few-worry-about-genetic-testing/">anxiety regarding genetic health risks? </a>
Previous 23andMe research has also tackled some of these questions. One <a href="https://peerj.com/articles/8/">study</a> looked at how consumers responded to reports that showed an increased genetic risk for breast cancer. That study found that people followed the recommendations in 23andMe&#8217;s BRCA1/BRCA2 (Selected Variants) Genetic Health Risk report,* and talked to their doctors. They also got confirmatory tests from their healthcare providers. And they talked to family members about their potential risk, thereby creating a cascade-like benefit. 
In this latest study, looking at how consumers respond to information in their Hereditary Thrombophilia Genetic Health Risk report, 23andMe’s report also helps people who are asymptomatic and, absent of family history, might not have known of their risk for a VTE without 23andMe&#8217;s test. While the report does not cover all the genetic variants associated with VTEs, it does include the two most common and best-understood variants.
As the researchers state in the new study: &#8220;Taken together, these results suggest that consumers may experience personal utility from receiving DTC genetic results for VTE risk that is distinct from the potential benefit in receiving clinically actionable information.&#8221;
<hr />
*The 23andMe PGS test uses qualitative genotyping to detect select clinically relevant variants in the genomic DNA of adults from saliva for the purpose of reporting and interpreting genetic health risks. It is not intended to diagnose any disease. Your ethnicity may affect the relevance of each report and how your genetic health risk results are interpreted. Each genetic health risk report describes if a person has variants associated with a higher risk of developing a disease, but does not describe a person’s overall risk of developing the disease. The test is not intended to tell you anything about your current state of health, or to be used to make medical decisions, including whether or not you should take a medication, how much of a medication you should take, or determine any treatment.  Warnings &amp; Limitations: The 23andMe PGS Genetic Health Risk Report for BRCA1/BRCA2 (Selected Variants) is indicated for reporting of the 185delAG and 5382insC variants in the BRCA1 gene and the 6174delT variant in the BRCA2 gene. The report describes if a woman is at increased risk of developing breast and ovarian cancer and if a man is at increased risk of developing breast cancer or may be at increased risk of developing prostate cancer. The three variants included in this report are most common in people of Ashkenazi Jewish descent and do not represent the majority of BRCA1/BRCA2 variants in the general population. This report does not include variants in other genes linked to hereditary cancers and the absence of variants included in this report does not rule out the presence of other genetic variants that may impact cancer risk. The PGS test is not a substitute for visits to a healthcare professional for recommended screenings or appropriate follow-up.  Results should be confirmed in a clinical setting before taking any medical action. For important information and limitations regarding other genetic health risk reports and carrier status reports, click <a href="https://www.23andme.com/test-info/">here</a>. 
&nbsp;

23andMe Blog

23andMe Blog Team

New Study on People’s Response to Information from Direct-to-Consumer Genetic Testing

Data shows that people&#8217;s activity level is back to pre-pandemic levels
By: Teresa Filshtein Sonmez &amp; Stella Aslibekyan*
A few months into the COVID-19 pandemic, a consistent narrative has emerged: people were <img loading="lazy" decoding="async" class="alignright wp-image-28313 size-medium" src="http://35.88.189.111/wp-content/uploads/2020/06/GettyImages-1143880641-300x193.jpg" alt="Steps" width="300" height="193" srcset="https://blogcms.23andme.com/wp-content/uploads/2020/06/GettyImages-1143880641-300x193.jpg 300w, https://blogcms.23andme.com/wp-content/uploads/2020/06/GettyImages-1143880641.jpg 736w" sizes="auto, (max-width: 300px) 100vw, 300px" />
However, the timeframe for most of these studies does not extend past June 2020. Did the decline in activity continue as the work from home trend gained strength and the schools remained closed? Or did people adapt to the new realities of post-COVID-19 life, finding some return to normal in physical exercise?
<h6>An Inflection Point</h6>
New data collected and analyzed by 23andMe appears to support the second scenario. Following the initial 22 percent drop in daily steps during the first month of the epidemic in the US, the average number of daily steps taken by our research participants went back up to the pre-shelter-in-place levels.
The inflection point occurred in mid-April, approximately one month after the first wave of shelter-in-place orders, and was followed by a gradual and consistent recovery throughout the summer months. Because summer is usually associated with increased physical activity, we compared 2020 data to the same period (February &#8211; September) in 2019 (Figure 1).

 <figure class="wp-block-image size-large is-style-default"><img loading="lazy" decoding="async" width="512" height="222" src="https://blogcms.23andme.com/wp-content/uploads/2020/09/Weekday-Daily-Totals.png" alt="" class="wp-image-28467" srcset="https://blogcms.23andme.com/wp-content/uploads/2020/09/Weekday-Daily-Totals.png 512w, https://blogcms.23andme.com/wp-content/uploads/2020/09/Weekday-Daily-Totals-300x130.png 300w" sizes="auto, (max-width: 512px) 100vw, 512px" /></figure>
 
<h6>Digging into the Data</h6>
Notably, prior to shelter in place orders, physical activity levels were similar between 2019 and 2020, followed by a dramatic divergence in mid-March. After mid-April of 2020, the increase in average daily step counts was steeper compared to the same period in 2019, suggesting that seasonal effects do not completely explain the observed trend. Finally, although 2020 average step counts recovered to pre-pandemic levels by the end of summer, they remained lower than 2019 step counts when seasonality was taken into account.
Because data from wearable devices (e.g. smartwatches) offer a <a href="https://www.wired.com/2015/03/fitness-tracking-test/">more accurate measurement</a> of physical activity than smartphone-derived step counts, we restricted all subsequent analyses to watch data only. We first stratified our data by sex to examine potential disparities. In our <a href="https://blog.23andme.com/23andme-research/activity-changes-during-covid/">initial analysis</a>, we observed that men and women experienced similar drops in physical activity, although women consistently attained ~1000 fewer daily steps than men. This difference, well-documented by <a href="https://journals.lww.com/acsm-msse/Fulltext/2010/10000/Pedometer_Measured_Physical_Activity_and_Health.4.aspx">previous studies</a>, persisted in the recovery data as well (Figure 2).

 <figure class="wp-block-image size-large is-style-default"><img loading="lazy" decoding="async" width="1024" height="443" src="https://blogcms.23andme.com/wp-content/uploads/2020/09/Average-Weekday-totals-1024x443.png" alt="" class="wp-image-28468" srcset="https://blogcms.23andme.com/wp-content/uploads/2020/09/Average-Weekday-totals-1024x443.png 1024w, https://blogcms.23andme.com/wp-content/uploads/2020/09/Average-Weekday-totals-300x130.png 300w, https://blogcms.23andme.com/wp-content/uploads/2020/09/Average-Weekday-totals-768x333.png 768w, https://blogcms.23andme.com/wp-content/uploads/2020/09/Average-Weekday-totals-880x381.png 880w, https://blogcms.23andme.com/wp-content/uploads/2020/09/Average-Weekday-totals-1180x511.png 1180w, https://blogcms.23andme.com/wp-content/uploads/2020/09/Average-Weekday-totals.png 1566w" sizes="auto, (max-width: 1024px) 100vw, 1024px" /></figure>
 
<h6>Different Age Groups</h6>
Although the effect of COVID-19 in our data did not vary by sex, different age groups exhibited distinct trajectories in both drop and recovery. Initially, the sharpest drop in physical activity was observed among 20 to 30-year-olds, whose step counts pre-pandemic exceeded those of other age groups. By the end of August, however, this group showed an impressive albeit incomplete recovery (Figure 3).
The only group where step counts remained depressed comprised individuals over 70 years of age, highlighting their vulnerability not only to COVID-19 infection but also to the potential negative consequences of prolonged physical inactivity.

 <figure class="wp-block-image size-large is-style-default"><img loading="lazy" decoding="async" width="1024" height="444" src="https://blogcms.23andme.com/wp-content/uploads/2020/09/weekday-totals-1024x444.png" alt="" class="wp-image-28469" srcset="https://blogcms.23andme.com/wp-content/uploads/2020/09/weekday-totals-1024x444.png 1024w, https://blogcms.23andme.com/wp-content/uploads/2020/09/weekday-totals-300x130.png 300w, https://blogcms.23andme.com/wp-content/uploads/2020/09/weekday-totals-768x333.png 768w, https://blogcms.23andme.com/wp-content/uploads/2020/09/weekday-totals-880x381.png 880w, https://blogcms.23andme.com/wp-content/uploads/2020/09/weekday-totals-1180x512.png 1180w, https://blogcms.23andme.com/wp-content/uploads/2020/09/weekday-totals.png 1564w" sizes="auto, (max-width: 1024px) 100vw, 1024px" /></figure>
 
We observed that the difference in walking habits between participants from metropolitan vs. rural areas diminished as the pandemic unfolded (Figure 4a). Pre-shelter in place and consistently with <a href="https://jech.bmj.com/content/57/1/29">other reports</a>, urban residents walked on average 600 steps/day more than their rural counterparts. Since late March, however, the average difference between the two groups shrank to less than 100 steps/day.

 <figure class="wp-block-image size-large is-style-default"><img loading="lazy" decoding="async" width="512" height="223" src="https://blogcms.23andme.com/wp-content/uploads/2020/09/Weekday-Steps-Post-6-months.png" alt="" class="wp-image-28470" srcset="https://blogcms.23andme.com/wp-content/uploads/2020/09/Weekday-Steps-Post-6-months.png 512w, https://blogcms.23andme.com/wp-content/uploads/2020/09/Weekday-Steps-Post-6-months-300x131.png 300w" sizes="auto, (max-width: 512px) 100vw, 512px" /></figure>
 
Although rural step counts returned to their pre-COVID-19 levels, a full recovery has so far eluded the urban residents — likely reflecting the lasting changes to workplace and school commutes rather than leisure time physical activity. This hypothesis is supported by data collected on weekends (Figure 4b): unlike in weekday data, step counts recorded on Saturdays and Sundays were consistently higher in metropolitan areas.

 <figure class="wp-block-image size-large is-style-default"><img loading="lazy" decoding="async" width="1024" height="446" src="https://blogcms.23andme.com/wp-content/uploads/2020/09/Weekend-Steps-6-Months-After-1024x446.png" alt="" class="wp-image-28466" srcset="https://blogcms.23andme.com/wp-content/uploads/2020/09/Weekend-Steps-6-Months-After-1024x446.png 1024w, https://blogcms.23andme.com/wp-content/uploads/2020/09/Weekend-Steps-6-Months-After-300x131.png 300w, https://blogcms.23andme.com/wp-content/uploads/2020/09/Weekend-Steps-6-Months-After-768x335.png 768w, https://blogcms.23andme.com/wp-content/uploads/2020/09/Weekend-Steps-6-Months-After-880x384.png 880w, https://blogcms.23andme.com/wp-content/uploads/2020/09/Weekend-Steps-6-Months-After-1180x514.png 1180w, https://blogcms.23andme.com/wp-content/uploads/2020/09/Weekend-Steps-6-Months-After.png 1562w" sizes="auto, (max-width: 1024px) 100vw, 1024px" /></figure>
 
<h6>The Power of 23andMe&#8217;s Research Model</h6>
Enabled by our powerful rapid data collection platform, our analyses tell a story of both resilience and vulnerability in real-time. The overall conclusion is hopeful: even amidst the pandemic-related disruptions, many people are finding ways to increase their daily movement. This finding is especially encouraging in light of the<a href="https://www.nytimes.com/2020/05/27/well/move/coronavirus-exercise-stress-mental-health-depression-mood-resilience.html"> recent studies</a> showing that exercise may be a successful strategy to boost mental health in these challenging times.
Nevertheless, our data also draw attention to groups that are not experiencing these benefits to the same extent: older individuals, rural residents, and women. As we continue to adapt to life with COVID-19, any initiative to promote exercise should consider not only health behaviors but also issues of access and equity to maximize the positive health impact of physical activity.
*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 Jain, 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

Stepping Back Up Amid COVID-19

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 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

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

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>
 
 <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/2020/07/personality-traits-for-social-distaning.png" alt="" class="wp-image-28398" srcset="https://blogcms.23andme.com/wp-content/uploads/2020/07/personality-traits-for-social-distaning.png 512w, https://blogcms.23andme.com/wp-content/uploads/2020/07/personality-traits-for-social-distaning-300x168.png 300w" sizes="auto, (max-width: 512px) 100vw, 512px" /></figure>
 
<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

Racial and Ethnic Disparities in Impact of COVID-19

Published in <a href="https://www.cell.com/ajhg/fulltext/S0002-9297(20)30200-7">The American Journal of Human Genetics</a>, a paper by 23andMe researchers leveraged genetic data from close to 50,000 people to detail one of the most comprehensive investigations of the transatlantic slave trade ever done. 
The study confirms genetic links between regions in the Americas with areas along the Atlantic coast of Africa that align with routes of known slave voyages documented in shipping records. 
The researchers were able to date the arrival of specific African populations to different parts of the Americas and the representation of specific African communities in those regions of America.

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 <figure class="wp-block-image size-large is-style-default"><img loading="lazy" decoding="async" width="1024" height="654" src="https://blogcms.23andme.com/wp-content/uploads/2019/10/slave-trade-by-volume.jpg" alt="" class="wp-image-27639" srcset="https://blogcms.23andme.com/wp-content/uploads/2019/10/slave-trade-by-volume.jpg 1024w, https://blogcms.23andme.com/wp-content/uploads/2019/10/slave-trade-by-volume-300x192.jpg 300w, https://blogcms.23andme.com/wp-content/uploads/2019/10/slave-trade-by-volume-768x491.jpg 768w, https://blogcms.23andme.com/wp-content/uploads/2019/10/slave-trade-by-volume-880x562.jpg 880w" sizes="auto, (max-width: 1024px) 100vw, 1024px" /></figure>
 
<h6>Genetic Data and Historical Records</h6>
“Last year marked 400 years since the arrival of the first enslaved Africans in what was to become the United States of America,” said lead author Steven Micheletti, Ph.D., and a 23andMe population geneticist. 

 <figure class="wp-block-image size-large is-style-default"><img loading="lazy" decoding="async" width="1024" height="538" src="https://blogcms.23andme.com/wp-content/uploads/2020/07/African-Deportation_Final_01-1-1024x538.png" alt="" class="wp-image-28348" srcset="https://blogcms.23andme.com/wp-content/uploads/2020/07/African-Deportation_Final_01-1-1024x538.png 1024w, https://blogcms.23andme.com/wp-content/uploads/2020/07/African-Deportation_Final_01-1-300x158.png 300w, https://blogcms.23andme.com/wp-content/uploads/2020/07/African-Deportation_Final_01-1-768x403.png 768w, https://blogcms.23andme.com/wp-content/uploads/2020/07/African-Deportation_Final_01-1-880x462.png 880w, https://blogcms.23andme.com/wp-content/uploads/2020/07/African-Deportation_Final_01-1-1180x620.png 1180w, https://blogcms.23andme.com/wp-content/uploads/2020/07/African-Deportation_Final_01-1.png 1200w" sizes="auto, (max-width: 1024px) 100vw, 1024px" /></figure>
 
&nbsp;
The study documents genetic links to Africa in the Americas, Steven said.
“It’s important that we understand the rich history and contributions of African people and their descendants, to the culture and history not only of the United States but also to all the Americas. In looking at the genetic landscape that resulted from this forced migration, one gets a deep and profound sense of the continuous hardships people of African descent have endured.”
<h6>Some Surprises</h6>
While the study aligns with known historical records, the researchers also made some unexpected findings. One was an over-representation of Nigerian ancestry in many parts of the Americas compared to what shipping records show.
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 <figure class="wp-block-image size-large is-style-default"><img loading="lazy" decoding="async" width="1024" height="538" src="https://blogcms.23andme.com/wp-content/uploads/2020/07/Mean-African_Final_02-1024x538.png" alt="" class="wp-image-28345" srcset="https://blogcms.23andme.com/wp-content/uploads/2020/07/Mean-African_Final_02-1024x538.png 1024w, https://blogcms.23andme.com/wp-content/uploads/2020/07/Mean-African_Final_02-300x158.png 300w, https://blogcms.23andme.com/wp-content/uploads/2020/07/Mean-African_Final_02-768x403.png 768w, https://blogcms.23andme.com/wp-content/uploads/2020/07/Mean-African_Final_02-880x462.png 880w, https://blogcms.23andme.com/wp-content/uploads/2020/07/Mean-African_Final_02-1180x620.png 1180w, https://blogcms.23andme.com/wp-content/uploads/2020/07/Mean-African_Final_02.png 1200w" sizes="auto, (max-width: 1024px) 100vw, 1024px" /></figure>
 
&nbsp;
This most likely reflects the often under-discussed active trade that moved slaves within the Americas, even after the slave trade had been banned by several European nations. 
The data also indicated that South America and Central America had the lowest proportion of African ancestry when compared to the United States and the British Caribbean. This is despite the majority of enslaved people taken from Africa being shipped to South America. It likely reflects cultural and historical differences. It could be due to higher mortality rates in those areas, but also it may be a result that some Latin and South American countries promoted dilution of African ethnicity through intermarriage of fair-skinned European men and women of African descent.&nbsp;
Another surprise was that the researchers failed to find strong genetic connections with people from Senegal and The Gambia. That was unexpected given the number of enslaved people that were deported from that region of Africa. 
The researchers believe this may be because many of those enslaved Senegambians were transported to rice plantations in the United States because they had experience cultivating rice in Africa. But rice plantations in the United States were often rampant with malaria, resulting in extremely high death rates among enslaved people on those plantations.
<h6>History in the DNA</h6>
And the analysis yielded insights into other brutal practices of slavery, one that impacted the lifespan of male slaves and the sexual exploitation of women. 
<div class="mceTemp">
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</div>

 <figure class="wp-block-image size-large is-style-default"><img loading="lazy" decoding="async" width="1024" height="538" src="https://blogcms.23andme.com/wp-content/uploads/2020/07/African-Sex-Bias_-Final_01-1-1024x538.png" alt="" class="wp-image-28347" srcset="https://blogcms.23andme.com/wp-content/uploads/2020/07/African-Sex-Bias_-Final_01-1-1024x538.png 1024w, https://blogcms.23andme.com/wp-content/uploads/2020/07/African-Sex-Bias_-Final_01-1-300x158.png 300w, https://blogcms.23andme.com/wp-content/uploads/2020/07/African-Sex-Bias_-Final_01-1-768x403.png 768w, https://blogcms.23andme.com/wp-content/uploads/2020/07/African-Sex-Bias_-Final_01-1-880x462.png 880w, https://blogcms.23andme.com/wp-content/uploads/2020/07/African-Sex-Bias_-Final_01-1-1180x620.png 1180w, https://blogcms.23andme.com/wp-content/uploads/2020/07/African-Sex-Bias_-Final_01-1.png 1200w" sizes="auto, (max-width: 1024px) 100vw, 1024px" /></figure>
 
&nbsp;
The report confirmed what other studies have shown: a bias towards African female contributions to the gene pools of the Americas due to generations of rape and exploitation. The study found that this was particularly stark in Central America and South America. 
This was another example where genetic results support historical accounts of the dehumanization of enslaved people and their descendants 
<h6>A Deeper Understanding</h6>
Joanna Mountain, 23andMe’s Senior Director of Research and a co-author of the paper, said the study deepens our understanding of the impact of the transatlantic slave trade.
“Our study advances the understanding of the consequences of this period by comparing genetic connections between Africa and the Americas with historical records,” Mountain said. “While historical records previously revealed a large part of the story of the transatlantic slave trade, this study yielded insights into historical processes that may have been only conjectured prior to this study.”
But the research also reveals the deep connections to Africa across all the Americas. 

For Uzodinma Iweala a medical doctor and CEO of The Africa Center, who read an early draft of the paper, it’s that aspect of the paper that resonated the most.&nbsp;
Dr. Iweala, who is Igbo and the child of Nigerian immigrants, said in traveling throughout the United States, the Caribbean and South America he has always been inspired by the long-standing connections between people and the African continent and its Diaspora that show the triumph of personal and community resilience in a context of deliberate and sustained violence.&nbsp;
“It’s a sense of familiarity I and my family have felt in places as different and spread out as St. Simons Island in Georgia, or the streets of Jamaica, or in Bahia, Brazil,” he said. “It sometimes feels like walking the streets of the village where my family is from in Nigeria and that makes me feel safe and welcome.”
The study would not have been possible without the contributions of data by tens of thousands of 23andMe customers who consented to participate in research.

Research — Page 18