The history you share with your family connects you to your past, but it can also ground you in the present, and help prepare you for tomorrow.
This is most clear with your <a href="https://www.23andme.com/dna-health-ancestry" target="_blank" rel="noopener">family health history</a>, considered a cornerstone for every medical record. Knowing about your parents’ or siblings&#8217; health adds another dimension to what you already know about yourself. This knowledge raises awareness of what to look out for. It gives you and your doctor another layer of information for helping to keep you well.
The problem is that many of us are entirely unaware of our family&#8217;s health history. Sometimes our knowledge doesn&#8217;t go beyond our parents. Yet knowing whether hypertension or diabetes or certain types of cancer run in your family could be vital for you. So how can you document and keep track of this information?
<img loading="lazy" decoding="async" class="aligncenter wp-image-28546 size-large" src="http://35.88.189.111/wp-content/uploads/2020/10/Family-Health-History-Tree--1024x506.jpg" alt="A view of the Family Health History Tree" width="1024" height="506" srcset="https://blogcms.23andme.com/wp-content/uploads/2020/10/Family-Health-History-Tree--1024x506.jpg 1024w, https://blogcms.23andme.com/wp-content/uploads/2020/10/Family-Health-History-Tree--300x148.jpg 300w, https://blogcms.23andme.com/wp-content/uploads/2020/10/Family-Health-History-Tree--768x380.jpg 768w, https://blogcms.23andme.com/wp-content/uploads/2020/10/Family-Health-History-Tree--880x435.jpg 880w, https://blogcms.23andme.com/wp-content/uploads/2020/10/Family-Health-History-Tree--1180x583.jpg 1180w, https://blogcms.23andme.com/wp-content/uploads/2020/10/Family-Health-History-Tree-.jpg 1440w" sizes="auto, (max-width: 1024px) 100vw, 1024px" />
<h6>Family Health History Tree</h6>
23andMe just launched a new tool for Health + Ancestry Service customers in the U.S. and Canada that could help, called the Family Health History Tree.
Much like any family tree, this one offers a visual representation of how you connect to different relatives. But this tree adds the ability to include important medical conditions, offering you a visual record of current and past health issues for you and your close relatives.
The 23andMe Family Health History Tree is meant to include information about close family members. You may consider including your parents, children, grandparents, siblings, half-siblings, aunts, and uncles. These are the relatives with whom you share the most DNA. Beyond sharing DNA, your close family members also often have other things in common that can influence your health. We might live in the same geographic area, eat the same cuisine, and have similar lifestyle choices, like whether we choose to smoke or drink alcohol. These environmental factors, together with genetics, all play a role in your health.
<h6>Knowledge is Power</h6>
That&#8217;s why knowing about health conditions that affected your relatives may help you understand more about your own health. The Family Health History Tree is more than just a record. It is a visual representation of these family connections. Adding in health conditions offers you a better way to track this information to help you and a healthcare professional manage your health.
So what kind of health information should you add to your Family Health History Tree?
We know that remembering the exact medical name of a condition can be difficult. That&#8217;s why we&#8217;ve added a function that will offer suggestions as you start typing a condition name. Adding condition names, dates, and age of diagnosis can be helpful, but we also know that remembering specific dates can also be difficult. That’s OK. Your best guess is fine.
<h6>Be Mindful</h6>
Your family health history is a powerful tool for managing your health, but it may include sensitive information about your living relatives. Before you enter sensitive information about living relatives, you should make sure you have their permission to do so. In addition, please respect a person&#8217;s wishes to maintain the privacy of their sensitive health information when discussing with others. 23andMe does not share individual customer data without their consent. And we never share this data with employers or insurers or third-party marketers.
You can learn more about 23andMe&#8217;s privacy protections <a href="https://www.23andme.com/privacy/">here</a>.
23andMe&#8217;s Family Health History Tree is a tool for you to help you manage your health.

23andMe Blog

23andMe Blog Team

23andMe’s New Family Health History Tree

Thomas Park Clement helped hundreds of Korean adoptees like him use DNA testing to connect for the first time with biological relatives. Strangely, up until a few years ago, he’d never thought about tracking down his birth parents.
<div id="attachment_28486" style="width: 310px" class="wp-caption alignright"><img loading="lazy" decoding="async" aria-describedby="caption-attachment-28486" class="wp-image-28486 size-medium" src="http://35.88.189.111/wp-content/uploads/2020/09/Thomas-Passport-Photo-Square-300x300.jpg" alt="A passport photo of Thomas as a boy just before coming to the United States for his adoption," width="300" height="300" srcset="https://blogcms.23andme.com/wp-content/uploads/2020/09/Thomas-Passport-Photo-Square-300x300.jpg 300w, https://blogcms.23andme.com/wp-content/uploads/2020/09/Thomas-Passport-Photo-Square-150x150.jpg 150w, https://blogcms.23andme.com/wp-content/uploads/2020/09/Thomas-Passport-Photo-Square-271x271.jpg 271w, https://blogcms.23andme.com/wp-content/uploads/2020/09/Thomas-Passport-Photo-Square-372x372.jpg 372w, https://blogcms.23andme.com/wp-content/uploads/2020/09/Thomas-Passport-Photo-Square-574x574.jpg 574w, https://blogcms.23andme.com/wp-content/uploads/2020/09/Thomas-Passport-Photo-Square.jpg 597w" sizes="auto, (max-width: 300px) 100vw, 300px" />A passport photo of Thomas was taken before his adoption.</div>
“I don’t know why,” Thomas said in a <a href="https://celinalee.co/podcast/">podcast</a> last year.
He never had the urge, he said. Maybe he was too busy.
A prolific inventor, entrepreneur, and now philanthropist, Thomas was a long way from the biracial boy abandoned in Seoul, South Korea in the 1950s. He never forgot where he came from, but he also didn’t feel the need to go back and find his biological relatives.  
<h2>Sharing his Gifts</h2>
Thomas was born during the Korean War to a Korean mother and an American soldier. By the time he was four, his father had left. The last time he saw his mother, Thomas was on a corner near a crowded market in Seoul. She told him to walk down the street and not look back. He never did.
Thomas lived on the streets and then in a rough-and-tumble orphanage. After a few harrowing years, an American family adopted him and brought him to the United States.
It took some time for Thomas to shake the years of deprivation from his psyche. During his first birthday celebration in the U.S., he gathered all the gifts he received and put them in a corner where he guarded them. At the same time, the rest of the children played and enjoyed the party. It was only later that he realized he’d missed out.
“I decided I didn’t want to miss one more party so (in the future) I would share my ‘presents’ with everybody,” he said.
He never forgot the lesson, so he’s made a point of giving back.
<h2>Giving Back</h2>
Among his philanthropic gifts was a donation of $1 million to cover the costs for DNA testing for hundreds of <a href="https://blog.23andme.com/tag/korean-adoptees/">Korean adoptees</a>. Many have shared their stories with him: sons and daughters finding their <a href="http://www.koreaherald.com/view.php?ud=20160815000120">mothers</a> or fathers, <a href="https://blog.23andme.com/23andme-customer-stories/seoul-sisters-and-brothers/">brothers and sisters</a> finding each other, and even <a href="https://blog.23andme.com/23andme-customer-stories/23andme-reunites-identical-twins-separated-birth/">identical twins</a> finding one another.
“You have to remember these are people who up until then had never even met a biological relative,” Thomas said.
<img loading="lazy" decoding="async" class="alignright wp-image-28487 size-medium" src="http://35.88.189.111/wp-content/uploads/2020/09/Thomas-Headshot-Square-300x300.jpg" alt="" width="300" height="300" srcset="https://blogcms.23andme.com/wp-content/uploads/2020/09/Thomas-Headshot-Square-300x300.jpg 300w, https://blogcms.23andme.com/wp-content/uploads/2020/09/Thomas-Headshot-Square-150x150.jpg 150w, https://blogcms.23andme.com/wp-content/uploads/2020/09/Thomas-Headshot-Square-271x271.jpg 271w, https://blogcms.23andme.com/wp-content/uploads/2020/09/Thomas-Headshot-Square-372x372.jpg 372w, https://blogcms.23andme.com/wp-content/uploads/2020/09/Thomas-Headshot-Square.jpg 408w" sizes="auto, (max-width: 300px) 100vw, 300px" />And many had tried <a href="https://www.nytimes.com/2016/08/28/world/asia/south-korea-adoptees-325kamra.html">without success</a> to find anything about their families. Some just wanted to connect with their Korean roots. International Adoptions in the United States didn’t begin in earnest until 1955 and the passage of the <a href="https://books.google.com/books?id=HDklDwAAQBAJ&amp;pg=PA7&amp;lpg=PA7&amp;dq=%22Relief+of+Certain+War+Orphans%22+korean+adoption&amp;source=bl&amp;ots=ocLy46VVbp&amp;sig=ACfU3U0eq2jwpXxoJ5Mq9Gicbzh7ZMhARA&amp;hl=en&amp;sa=X&amp;ved=2ahUKEwjQ99Ky163jAhUFOH0KHek0B5gQ6AEwCXoECAkQAQ#v=onepage&amp;q=%22Relief%20of%20Certain%20War%20Orphans%22%20korean%20adoption&amp;f=false">Bill for Relief of Certain War Orphans</a>. At first, the large-scale international adoptions were from Korea coming just after the Korean War. For at least <a href="https://journals.sagepub.com/doi/pdf/10.1177/1536504211427866">40 years</a>, most international adoptions originated in Korea, with at least <a href="https://journals.sagepub.com/doi/pdf/10.1177/1536504211427866">200,000</a> children adopted worldwide. That only lessened in the late 1980s after Korea began limiting the number of children who could be adopted out of the country.
<h2>Coming from Korea</h2>
Thomas was part of that initial wave of early adoptees from Korea. He understands why making those connections is so important for some adoptees. Some of it is simply wanting to connect with a biological relative. Still, it can also be about making cultural connections.
For whatever reason, he didn’t have the same tug to find his birth parents. He was happy with his adoptive family. His father once said to him that “you adopted us.” As Thomas remembers things, he had awful grades and was mostly non-verbal as a kid. He thought he was stupid. But he loved to invent and tinker.
<h2>Moving Forward and then Looking Back</h2>
After college at Purdue studying electrical engineering, Thomas worked first in communications equipment manufacturing and then moved into building medical devices. In the late 1980s, he founded his own company Mectra Labs. The company has built various laparoscopic surgical instruments used in cancer treatment as well as instruments for cardiovascular and brain surgeries. Thomas holds more than 40 patents.
He’s written two books about his life, The Unforgotten War from 1998, and his 2012 memoir <a href="https://www.amazon.com/Dust-Streets-Journey-Biracial-Orphan/dp/0966795210/ref=pd_lpo_14_t_0/136-9539512-9233228?_encoding=UTF8&amp;pd_rd_i=0966795210&amp;pd_rd_r=86f5bd8d-7180-405b-9bdb-0a0e06713f36&amp;pd_rd_w=JoTy8&amp;pd_rd_wg=tEgOk&amp;pf_rd_p=7b36d496-f366-4631-94d3-61b87b52511b&amp;pf_rd_r=DXK8S09DKH8MAAAD2A99&amp;psc=1&amp;refRID=DXK8S09DKH8MAAAD2A99">Dust of the Streets: The Journey of a Biracial Orphan of the Korean War.</a> As his career advanced, Thomas found time to give back to various causes and charities.
<h2>Mixed Roots</h2>
One of the many groups he helped was the <a href="https://mixedrootsfoundation.org/">Mixed Roots Foundation</a>, a non-profit to help adoptees with multicultural backgrounds and their families through all adoption stages. Clement served on the board of directors for the foundation and, at one point, was given a 23andMe kit from the founder and president of the group, Holly Choon Hyang Bachman.
He thought he might as well try it. He was curious about the health results and looking at his 23andMe ancestry reports, he discovered that half his ancestry was Ashkenazi Jewish. After opting-in to DNA Relatives, Thomas looked at his results and found that he had hundreds of matches with other 23andMe customers who also opted into the feature. One of them was Holly.
“I had long since accepted the fact that I would never know one blood relative,” Thomas said.
And then he had 1,000.
“I might not have tested if Holly hadn’t given me the kit, so that’s why I started the free kit program,” he said.
<h2>Learning about Himself</h2>
He not only gave kits to Korean adoptees, through a Facebook group called Korean American Adoptees but also former service members who served in Korea interested in finding children they may have fathered.
Holly was the first biological relative he ever knew. But there would be more.
With help from his friend Bella, who works with the non-profit <a href="https://www.325kamra.org/">325Kamra</a>, which uses DNA testing to reunite Korean adoptees with their biological relatives, Thomas was able to find his half-sister and two half-brothers on his father’s side. And he identified his birth father, but he wasn’t able to meet him before he died. Thomas said he didn’t want to disrupt their lives. When his half-sister told him that her mother would be devastated by learning that her husband had fathered another child, Thomas backed off. But not before learning a little bit about his birth father and seeing photos of him. They shared a lot of interests. Like Thomas, he’d been a bit of a renegade, a tinkerer, engineer, who loved cars and animals. The two had a similar body type, and although Thomas didn’t see it, his sister said Thomas looked a lot like his birth father.
“It was fascinating to hear about how he was as a person because when someone was describing him, I thought they were talking about me,” he said.
It’s been a gift to learn about his birth father in this way, and he feels fortunate that he’s helped others make similar connections.
“I mean, the stories just go on and on,” he said. “I didn’t realize the emotional aspect of this program … It’s a humbling experience.”

Helping Other Korean Adoptees Find Their Story

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

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)

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