23andMe scientists recently shared some encouraging preliminary findings with participants in our Black Representation in Genomic Research study. The study is meant to help accelerate scientific discoveries and medical insights that directly benefit the Black community.
The scientists digging into the data believe these early findings offer encouraging signs that their work will indeed help alleviate some of the massive disparities in health and genetic research in non-European populations. The study itself is part of an on-going effort by 23andMe to improve diversity in research. That’s crucially important, according to speakers during the webinar.
“It’s knowledge that could help level the playing field,” said John Carpten, Ph.D., a Professor and Chair of Translational Genomics, as well as the Director of the Institute of Translational Genomics.
<h2>The Important of Diversity in Research</h2>
Professor Carpten was one of three outside scientists participating in the webinar. The other speakers included <a href="https://profiles.stanford.edu/carlos-bustamante">Carlos Bustamante</a>, Ph.D., a professor at Stanford University. He is an internationally recognized leader in applying data science and genomics technology to problems in medicine, agriculture, and biology. Also among the speakers was <a href="https://icahn.mssm.edu/profiles/eimear-kenny">Eimear Kenney</a>, Ph.D., the founding Director of the Institute for Genomic Health and Associate Professor of Medicine and Genetics at Mount Sinai. She leads research at the interface of genomics, medicine, and computer science.
They each noted the importance of diversifying genetic research and participation to ensure that all people, no matter their ethnicity, benefit from medical and scientific breakthroughs.
<h2>A Lack of Representation in Resarch</h2>
There is still much to be done, however. One <a href="https://www.cell.com/cell/fulltext/S0092-8674(19)30231-4">estimate in 2018</a> found that 78 percent of genome-wide association studies contained data from people only of European descent. The lack of data from non-Europeans, especially those of African descent, leads to less effective treatments for members of the Black community. Over the last decade, 23andMe has taken steps to improve the diversity of our research. Whether through the<a href="https://www.23andme.com/roots/"> Roots into the Future Project</a>, the<a href="https://www.23andme.com/africa-project/"> African Genetics Project</a>, or<a href="https://blog.23andme.com/23andme-research/african-american-sequencing-project/"> African American Sequencing Project,</a> each project was meant to enhance the diversity in our research and our product.
23andMe’s Black Representation in Genomic Research is another step in that journey. It will offer a way to include underrepresented populations in crucial medical research so that they too can benefit from those breakthroughs.
<h2>The Black Representation in Genomic Research Study</h2>
As part of this study, 23andMe recruited more than 1,000 people with African ancestry who consented to participate in research. The median age of participants is 37. Most of those who participated were in New York, California, Texas, Georgia and Florida. In addition about 69 percent were women, and most of those who participated had West African ancestry. The study involved using whole-genome and RNA sequencing data to study gene expression in people with African ancestry. This kind of “functional data” is crucial for understanding the significance of genetic variants identified through genome-wide association studies that, in turn, can help in developing treatments for diseases.
Unfortunately, because of the lack of representation in current research, there is not much gene expression reference data for people of African ancestry. The Black Representation in Genomic Research study is an effort to change that. And ensure that the Black community can benefit from scientific discoveries and drug development. The anonymized data from this study will help not just 23andMe researchers but also other academic researchers through the National Institutes of Health’s dbGaP.
<h2>Sharing Preliminary Study Findings</h2>
The webinar held earlier this Fall was an effort to share with those participating in the research some of what our scientists have learned so far and to answer their questions.
<div id="attachment_29289" style="width: 1034px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" aria-describedby="caption-attachment-29289" class="wp-image-29289 size-large" src="https://blog-api.23andme.com/wp-content/uploads/2021/10/BRGR-ASHG-Poster-Kipper-1024x576.jpg" alt="" width="1024" height="576" srcset="https://blogcms.23andme.com/wp-content/uploads/2021/10/BRGR-ASHG-Poster-Kipper-1024x576.jpg 1024w, https://blogcms.23andme.com/wp-content/uploads/2021/10/BRGR-ASHG-Poster-Kipper-300x169.jpg 300w, https://blogcms.23andme.com/wp-content/uploads/2021/10/BRGR-ASHG-Poster-Kipper-768x432.jpg 768w, https://blogcms.23andme.com/wp-content/uploads/2021/10/BRGR-ASHG-Poster-Kipper-880x495.jpg 880w, https://blogcms.23andme.com/wp-content/uploads/2021/10/BRGR-ASHG-Poster-Kipper-1180x664.jpg 1180w" sizes="auto, (max-width: 1024px) 100vw, 1024px" />Kipper&#8217;s poster presented during  <a href="https://www.ashg.org/meetings/2021meeting/">American Society of Human Genetics,</a> showing some of the preliminary data from the BRGR study.</div>
23andMe computational biologist Kipper Fletez-Brant, Ph.D., one of the 23andMe scientists working on the study, also spoke during the webinar.
23andMe now has one of the largest genetic research datasets for people of African ancestry in the world. While we still need to improve representation in our research data, that large dataset allows 23andMe to bring new insight into research specific to people of African ancestry.
The effort is important for a number of reasons, and Kipper gave the example of how different conditions — certain cancers, diabetes, and asthma, for example — impact people of African ancestry differently. Some of those differences are due to environmental and social differences but genetics may also play a role, Kipper said. In addition, certain medications may also be more or less effective in people of African ancestry because of those differences. He said that studies like the Black Representation in Genomic Research that look at functional data will help better understand those differences.
A description of the BRGR study will also be presented at the upcoming annual meeting of the <a href="https://www.ashg.org/meetings/2021meeting/">American Society of Human Genetics</a>.

23andMe Blog

23andMe Blog Team

Black Representation in Genomic Research Study

Dear 23andMe Community,
Today is an exciting day in the development of our mission to help people access, understand and benefit from the human genome. We are thrilled to announce that we are taking another step in making personalized healthcare a reality by agreeing to acquire <a href="https://www.lemonaidhealth.com/">Lemonaid Health</a>.
<img loading="lazy" decoding="async" src="https://blog-api.23andme.com/wp-content/uploads/2021/10/1200x628-LH-23-Banner-1-1024x536.png" alt="" class="aligncenter wp-image-29234 size-large" width="1024" height="536" srcset="https://blogcms.23andme.com/wp-content/uploads/2021/10/1200x628-LH-23-Banner-1-1024x536.png 1024w, https://blogcms.23andme.com/wp-content/uploads/2021/10/1200x628-LH-23-Banner-1-300x157.png 300w, https://blogcms.23andme.com/wp-content/uploads/2021/10/1200x628-LH-23-Banner-1-768x402.png 768w, https://blogcms.23andme.com/wp-content/uploads/2021/10/1200x628-LH-23-Banner-1-880x461.png 880w, https://blogcms.23andme.com/wp-content/uploads/2021/10/1200x628-LH-23-Banner-1-1180x618.png 1180w, https://blogcms.23andme.com/wp-content/uploads/2021/10/1200x628-LH-23-Banner-1.png 1200w" sizes="auto, (max-width: 1024px) 100vw, 1024px" />Over the years we have asked you, our customers, what more do you want from 23andMe. We heard from many of you that the genetic information you got from 23andMe can change your life — but when you take it to a physician you may meet skepticism or uncertainty about what to do with the information. We want to change that.   
We are acquiring Lemonaid Health so that we can bring true personalized healthcare to 23andMe customers. Personalized healthcare means healthcare that is based on the combination of your genes, your environment, and your lifestyle — with recommendations and plans that are specific to you.
Lemonaid Health is a pioneer in telemedicine and digital pharmacy. In Lemonaid Health we found a team of passionate, patient-obsessed people who want to bring better healthcare to everyone in an affordable, accessible way. Lemonaid Health’s focus on the patient and its philosophy of delivering individualized care fits perfectly with our mission of empowering people to take control of their health.
Twenty years ago Francis Collins, then the Director of National Institutes of Health, said, “Genome science will &#8230;revolutionize the diagnosis, prevention, and treatment of most, if not all, human diseases.” With healthcare still being one size fits all, we believe 23andMe will be the leader in using the incredible potential of genetics to enhance every individual’s primary care experience. We want to make that a reality for you — in an affordable, accessible, and meaningful way.
Here’s to being healthy at 100!
<img loading="lazy" decoding="async" src="https://blog-api.23andme.com/wp-content/uploads/2015/10/sig_small_transparent.jpg" alt="" class="aligncenter wp-image-23161 size-full" width="318" height="133" srcset="https://blogcms.23andme.com/wp-content/uploads/2015/10/sig_small_transparent.jpg 318w, https://blogcms.23andme.com/wp-content/uploads/2015/10/sig_small_transparent-300x125.jpg 300w" sizes="auto, (max-width: 318px) 100vw, 318px" />

A Letter from Anne: Making Personalized Healthcare a Reality

Most of us have felt the embarrassment of having an unsightly pimple at the worst possible time, but the impact can be more than just temporary mortification for those with severe acne and instead leave both literal and psychological scars.
About 85 percent of Americans have had acne, and it is estimated that less than 20 percent have experienced moderate to severe acne. While new treatments can help manage the condition and prevent scarring, there remains a lot of misinformation about the causes and best ways to deal with this common skin condition.
A new 23andMe+ Premium report Powered by 23andMe Research looks at a person&#8217;s likelihood of developing severe acne and provides information about some of the causes, and some of the ways to reduce the frequency and severity of breakouts. The new report uses machine learning techniques to estimate a person&#8217;s likelihood of having severe acne. To make that estimate, we use a statistical model that looks at more than 8,500 genetic variants as well as a person&#8217;s ethnicity and sex. 
Although it is most common during puberty, acne affects people of all ages. It occurs when hair follicles in the skin become clogged with oil, bacteria, and dead skin cells, which in turn can lead to many deep and painful types of pimples along with many whiteheads and blackheads. To help reduce the frequency and severity of breakouts, experts recommend using gentle skin cleansers, avoiding aggressive scrubbing, and avoiding touching and picking areas prone to acne. Severe acne can be persistent and lead to scarring, especially without proper treatment, which usually includes prescription medication.

 <figure class="wp-block-image size-large is-style-default"><img loading="lazy" decoding="async" width="808" height="318" src="https://blogcms.23andme.com/wp-content/uploads/2021/10/image-18.png" alt="" class="wp-image-29207" srcset="https://blogcms.23andme.com/wp-content/uploads/2021/10/image-18.png 808w, https://blogcms.23andme.com/wp-content/uploads/2021/10/image-18-300x118.png 300w, https://blogcms.23andme.com/wp-content/uploads/2021/10/image-18-768x302.png 768w" sizes="auto, (max-width: 808px) 100vw, 808px" /></figure>
 
<h6>Severe Acne</h6>
Severe acne often extends deeper into the skin than a mere breakout and can last a lot longer. In these cases, the acne may consist of cysts or nodules that are painful. In addition, after severe acne heals, scars can form. Enlarged and raised scars, called keloids, are more common in people with darker skin. In addition, severe acne may change the color of the skin.  It is often associated with changes in hormone levels caused by menstruation, or high levels of androgen hormones, for instance.
While genetics plays a role, other factors such as age and family history can increase the chances of developing acne. Some conditions that are also associated with changes in hormone levels, like polycystic ovary syndrome or congenital adrenal hyperplasia, can also increase the chances of developing severe acne. Certain medications also can play a role.

 <figure class="wp-block-image size-large is-style-default"><img loading="lazy" decoding="async" width="774" height="340" src="https://blogcms.23andme.com/wp-content/uploads/2021/10/image-17.png" alt="" class="wp-image-29206" srcset="https://blogcms.23andme.com/wp-content/uploads/2021/10/image-17.png 774w, https://blogcms.23andme.com/wp-content/uploads/2021/10/image-17-300x132.png 300w, https://blogcms.23andme.com/wp-content/uploads/2021/10/image-17-768x337.png 768w" sizes="auto, (max-width: 774px) 100vw, 774px" /></figure>
 
<h6>Taking Action</h6>
Understanding more about the genetic and non-genetic factors that may influence your likelihood of having severe acne can help in understanding how to help reduce the frequency and severity of breakouts. Remember to talk with your healthcare provider before making any significant lifestyle changes.
23andMe&#8217;s new Severe Acne report (Powered by 23andMe Research) is available to all 23andMe+ Premium members. To learn more about your report, go <a href="https://you.23andme.com/reports/prs.severe_acne/">here</a>.
Not yet a 23andMe+ Premium member? Find out more <a href="https://www.23andme.com/membership">here</a>.
<hr />
*The 23andMe Severe Acne report is based on 23andMe research and incorporates more than 8,500 genetic variants to provide information on the likelihood of having severe acne. The report does not account for lifestyle or family history and has not been reviewed by the US Food and Drug Administration.

New 23andMe+ Premium Report on Severe Acne

Editor&#8217;s note:  It&#8217;s National Liver Awareness Month we&#8217;re reposting this post with Wayne Eskridge to raise awareness about nonalcoholic fatty liver disease. 
Wayne Eskridge says he’s “just a typical American guy,” but that doesn’t begin to describe him really.
It’s true that, like a lot of Americans, Wayne loves red meat and potatoes. And like a lot of people, as he aged, he put on a pound or two each year until he was overweight. And like a lot of Americans, not just men, Wayne was told over and over during doctors’ visits that he should exercise more and watch what he ate. Over the years, he did diet and lose weight. But he gained it back. In that way, he was just like a “typical American guy.”
But something changed for him a few years ago that sets Wayne apart. 
“We’ve all heard these things endlessly, ‘lose weight and exercise’, and yet we don’t change our ways,” he said. “But if you can capture a person’s attention and emotional commitment to an idea at the right time, and with the right message, you can precipitate lasting change.”
&nbsp;

 <figure class="wp-block-image size-large is-style-default"><img loading="lazy" decoding="async" width="559" height="802" src="https://blogcms.23andme.com/wp-content/uploads/2021/09/NASH_portraits-3970-2.jpg" alt="" class="wp-image-29117" srcset="https://blogcms.23andme.com/wp-content/uploads/2021/09/NASH_portraits-3970-2.jpg 559w, https://blogcms.23andme.com/wp-content/uploads/2021/09/NASH_portraits-3970-2-209x300.jpg 209w" sizes="auto, (max-width: 559px) 100vw, 559px" /></figure>
 
<h6></h6>
<h6>An Unknown Risk</h6>
That’s what happened for Wayne, and he’s spent the last several years trying to help others to do the same.
He recently sat down with us at 23andMe to talk about his journey from an average American guy to a man who started a foundation to save others like him and help them on a path to better health.
The CEO and founder of the <a href="https://www.fattyliverfoundation.org/">Fatty Liver Foundation</a>, Wayne wants to raise awareness about a life-threatening condition that few people know anything about: nonalcoholic fatty liver disease. But he also wants to help people more broadly make health changes, and he’s willing to use his own story to help.
Tens of millions of people are walking around with fatty liver disease and don’t even know it. It’s one of the many potential consequences of being overweight. According to the <a href="https://www.niddk.nih.gov/health-information/liver-disease/nafld-nash/definition-facts">NIH&#8217;s National Institute of Diabetes and Digestive and Kidney Diseases</a>, it’s estimated that about 24 percent of American adults have the condition. Wayne was once like millions of others, walking around with a condition he didn’t know anything about. He wants to change that by raising awareness not only about fatty liver disease but also about the benefits of adopting healthy habits.
<h6>Healthy Changes</h6>
Lifestyle really is key. While genetics do play a role in the likelihood of developing fatty liver disease, lifestyle is very important. As part of our 23andMe+ membership, we have a report powered by our own research on nonalcoholic fatty liver disease. It looks at more than 1,400 genetic variants to estimate a person’s likelihood of developing the condition. But beyond genetics, lifestyle and diet play a big role in one’s likelihood in developing the disease. Wayne wants to raise awareness about all the factors that could lead to risks for the condition and push for more research.
Similar to other chronic conditions like type 2 diabetes, high blood pressure, and other various cardiovascular diseases, the number of people with nonalcoholic fatty liver disease has grown as the rates of obesity have risen. So many people are overweight that it’s been normalized, Wayne said.
“It’s as if it’s a non-event and there’s been this generational drift to accept less wellness,” he said.
In his own experience, he thinks back to long before his diagnosis, when his blood pressure was creeping up and his weight edged up, and he asked his doctor about it.
“And he said, ‘all my patients are dealing with this. It’s just how we are,’” Wayne recalls.
<h6>Taking Charge</h6>
For Wayne, it was a missed opportunity for the doctor to impress on him the importance of taking charge of his health.
“I may not have listened but he let that opportunity slide,” Wayne said.
Here are some sobering statistics. In the last two decades, the percentage of the American population who are obese went from about <a href="https://www.cdc.gov/obesity/data/adult.html">30 percent to more than 40 percent</a>, according to the Centers for Disease Control (CDC) and Prevention. Even among children, there’s been an uptick in obesity. In 1980 only about five percent of kids were considered obese, but by 2018 <a href="https://www.cdc.gov/nchs/fastats/obesity-overweight.htm">more than 19 percent were</a>, according to the CDC. And there is a cascade of chronic health issues that stem directly from that increase in obesity. Wayne’s focus has been on one of those conditions. And he started the <a href="https://www.fattyliverfoundation.org/">Fatty Liver Foundation</a> to raise awareness about this condition that affects so many people but remains largely unknown.
“If you have two friends, one of you likely has fatty liver disease, and don’t even know it,” said Wayne. “It’s that bad, there’s this whole suite of metabolic diseases — heart disease, diabetes, high blood pressure — that are all related to what’s happening in our society with the obesity epidemic.”
<h6>An Ah-Ha Moment</h6>
Wayne’s knowledge about fatty liver disease and other chronic metabolic conditions comes from the experience of years of trying to figure out what was going on with his own health. Ten years ago, Wayne didn’t know anything about fatty liver disease.
“I’d had my gallbladder removed and, after the procedure, the doctors showed me a photo of my liver,” he said.
The surgeon told him it appeared that he had stage four liver cirrhosis. If true that would be a bleak diagnosis with little that can be done. It turned out that Wayne didn’t have liver cirrhosis, but that encounter began a difficult five-year-long medical journey before being diagnosed with fatty liver disease, or more accurately cirrhotic nonalcoholic steatohepatitis (NASH) due to the build-up of fat in his liver, causing inflammation and liver damage.
That was Wayne’s ah-ha moment. That’s when he changed.
In going through all the challenges leading up to his diagnosis, Wayne and his wife had become much more aware of the true impact of diet and lifestyle on health. It’s as if it took that long, arduous journey for them to be receptive to the message he got when he was diagnosed. There really was no other way.
“I was determined to do everything I could to defeat the liver beast,” Wayne said. 
<h6>Helping Others</h6>
He and his wife went home and cleared out the pantry. They looked at the changes not as a diet but as a whole shift in how they lived, creating a healthy food strategy, passing on sugary desserts, processed foods, and juicy steaks. The shift paid off and he lost 45 pounds. He said the biggest accomplishment was going in for a liver biopsy and learning that his condition wasn’t progressing.
“My wife and I celebrated by eating a salad,” he said. 
Since then, Wayne has worked very hard to help others either dealing with a later-stage liver disease diagnosis, but also trying to prevent others from getting to a point of no return. The mission of the foundation is pretty stark. 
“We want to help you avoid this kind of death by helping you understand how you may be killing yourself slowly &#8212; and, what you can do about it. If you are already ill, we will do our best to help you with that process.”
According to the Fatty Liver Foundation:
<ul>
<li> 100 million Americans have a fatty liver, and the vast majority of them have no idea.</li>
<li> 20 million of them will develop nonalcoholic fatty liver disease.</li>
<li> 5 million will develop liver cirrhosis or NASH, which can end in liver failure. </li>
</ul>
<h6>Teachable Moments</h6>
In his work trying to make a dent in those stats, Wayne has used his own experience of seeing an image of his swollen liver. That’s what helped him internalize the message about how important his day-to-day lifestyle and diet had been to his health. The vision of his ailing liver was that of a “deadly beast” that was trying to kill him. Seeing it made him determined to do what he could to stop that from happening. 
He used that experience to inspire a recent study done by the foundation in Houston. There they did liver scans of patients, and showed them the condition of their own liver, and found that it did indeed register with patients who began making healthy changes to their diet.
That’s a message that goes beyond people at risk for fatty liver disease, and Wayne knows it. Fatty liver disease and being overweight can raise the risk of developing type 2 diabetes and heart disease. It can also progress to even more severe conditions. He wants to help people prevent that.
“It really comes down to how to motivate people to make a change,” Wayne said. “We’re looking for those teachable moments because we’ve all heard these messages endlessly about diet and exercise.”
<h6>Lasting Change</h6>
Food is about more than just nutrition and sustenance for so many of us. There are emotional and psychological components to what we eat and when we eat it. In a book about his own struggles to lose weight, the writer Tommy Tomlinson said that telling someone who is overweight to “eat less and exercise is like telling a boxer don’t get hit. You act as if there’s not an opponent.”
Food carries with it memories, for some, it becomes a reward or a reminder. Wayne knows that from personal experience. It’s why he and his wife had a tradition of celebrating big occasions with a chocolate volcano cake. They don’t do that anymore.
“It is so hard to change, but if you can capture a person’s attention and emotional commitment to an idea you can help them with lasting change,” he said.
For more information about the Fatty Liver Foundation visit their website <a href="https://www.fattyliverfoundation.org/">here</a>. You can find your 23andMe+ Nonalcoholic Liver Disease report (Powered by 23andMe Research) <a href="https://you.23andme.com/reports/prs.nafld/">here</a>.* Not yet at 23andMe+ member? Find out more <a href="https://www.23andme.com/membership">here</a>.

Raising Awareness About Fatty Liver Disease

This month,<a href="https://www.comparably.com/news"> Comparably</a> included 23andMe on its list of businesses with the <a href="https://www.businessinsider.com/large-companies-best-work-life-balance-comparably-ranking-2021-10">Best Company Work-Life Balance in 2021</a>.&nbsp;



<figure class="wp-block-image alignright"><img loading="lazy" decoding="async" width="300" height="250" src="https://blog-api.23andme.com/wp-content/uploads/2021/10/work-life-balance-2021-large-300x250.png" alt="" class="wp-image-29179" srcset="https://blogcms.23andme.com/wp-content/uploads/2021/10/work-life-balance-2021-large-300x250.png 300w, https://blogcms.23andme.com/wp-content/uploads/2021/10/work-life-balance-2021-large-768x639.png 768w, https://blogcms.23andme.com/wp-content/uploads/2021/10/work-life-balance-2021-large-1024x852.png 1024w, https://blogcms.23andme.com/wp-content/uploads/2021/10/work-life-balance-2021-large-880x732.png 880w, https://blogcms.23andme.com/wp-content/uploads/2021/10/work-life-balance-2021-large-1180x982.png 1180w, https://blogcms.23andme.com/wp-content/uploads/2021/10/work-life-balance-2021-large.png 1238w" sizes="auto, (max-width: 300px) 100vw, 300px" /></figure>



The list was compiled by Comparably using anonymous ratings from 23andMe employees over the last year. The pandemic has heightened many people’s focus on the difficulty of balancing their work obligations with their home responsibilities. Finding that balance was difficult even before the pandemic.



<h2 class="wp-block-heading" id="h-happy-at-work">Happy at Work</h2>



The award highlights companies where employees answered that they were satisfied with their work-life balance. 23andMe was listed as one of the Top 10 companies with the best work-life balance among large-sized companies, with more than 87 percent of employees saying they were <a href="https://blog.23andme.com/articles/happy-together-at-23andme">happy with the work-life balance at 23andMe</a>.



One employee singled out how <a href="https://blog.23andme.com/articles/23andmes-anne-wojcicki-among-the-best-ceos-for-women">23andMe’s CEO and Co-Founder Anne Wojcicki</a> has made this a top priority.



&#8220;I love that she values work-life balance and treats us as human beings rather than cogs in a machine. I also love her readiness to innovate&#8211;even in things like rethinking the workplace of the future.&#8221;



<h2 class="wp-block-heading" id="h-work-life-balance">Work-Life Balance</h2>



Long before COVID-19, 23andMe created a culture that valued getting your work done and having a healthy, vibrant life outside the office.&nbsp;



Family leave, flexible work schedules, and a robust benefits package played a role. And over the last year and a half, since the pandemic has forced most of the 23andMe employees to work from home, the company has added new and creative ways to address this new reality, from virtual movie showings to half days on Fridays to new wellness benefits. Earlier this year, 23andMe made Comparably’s list of the <a href="https://blog.23andme.com/news/23andmes-anne-wojcicki-among-the-best-ceos-for-women/">Best CEOs for Women</a>.



Making Comparably’s list of Best Company Work-Life Balance is validation that 23andMe&#8217;s work is helping our employees navigate the new realities of the workplace.&nbsp;

Work-Life Balance at 23andMe

With the world still feeling the effects of the pandemic, the <a href="https://www.ashg.org/meetings/2021meeting/">annual meeting of the American Society of Human Genetics</a> will yet again be virtual this year.
Last year’s conference showed that yes, it was possible to bring together thousands of scientists through their computer screens alone. From October 18th to October 22nd, scientists will virtually gather again for a week of presentations on the latest breakthroughs in genetics.<img loading="lazy" decoding="async" src="https://blog-api.23andme.com/wp-content/uploads/2020/04/cropped-23ANDME-LOGO.jpg" alt="" class="alignright wp-image-28236 size-medium" width="300" height="300" srcset="https://blogcms.23andme.com/wp-content/uploads/2020/04/cropped-23ANDME-LOGO.jpg 300w, https://blogcms.23andme.com/wp-content/uploads/2020/04/cropped-23ANDME-LOGO.jpg 150w, https://blogcms.23andme.com/wp-content/uploads/2020/04/cropped-23ANDME-LOGO.jpg 270w, https://blogcms.23andme.com/wp-content/uploads/2020/04/cropped-23ANDME-LOGO.jpg 192w, https://blogcms.23andme.com/wp-content/uploads/2020/04/cropped-23ANDME-LOGO.jpg 180w, https://blogcms.23andme.com/wp-content/uploads/2020/04/cropped-23ANDME-LOGO.jpg 32w, https://blogcms.23andme.com/wp-content/uploads/2020/04/cropped-23ANDME-LOGO.jpg 512w" sizes="auto, (max-width: 300px) 100vw, 300px" />
<h6>Diversity in Genetics Research</h6>
This year’s <a href="https://www.ashg.org/publications-news/newsletter/20210922-president/">Presidential Symposium</a> will feature a series of talks on diversity, race, inclusion and equity. We’ve previously highlighted 23andMe’s efforts to make our research and product more equitable, and we look forward to learning from others in the field about how we might further improve along with the rest of the broader genomics community.
<h6>23andMe Research Presentations</h6>
The conference will include a broad range of research across the field of genomics. Several scientists from 23andMe will also be presenting some of our related research. This includes our latest research on rare diseases, a recent study of gene expression in blood of individuals of African ancestry, and improved methods for polygenic risk scores.
Here is a list of 23andMe’s presentations and posters:
<ul>
<li aria-level="1"><a href="https://blog.23andme.com/23andme-research/rare-disease-research/">Suyash Shringarpure</a>, PhD, Sr. Scientist I, Statistical Genetics</li>
<ul>
<li aria-level="2">Talk: “<a href="https://eventpilotadmin.com/web/page.php?page=Session&#038;project=ASHG21&#038;id=P1310">Novel genetic associations for rare diseases with GWAS and trans-ethnic analysis of self-reported medical data</a>”</li>
<li aria-level="2">Tue, Oct 19; 4:00pm &#8211; 4:15pm ET</li>
</ul>
<li aria-level="1"><a href="https://blog.23andme.com/therapeutics/kipper-fletez-brant/">Kipper Fletez-Brant</a>, PhD, Scientist II, Computational Biology</li>
<ul>
<li aria-level="2">Poster: <a href="https://eventpilotadmin.com/web/page.php?page=Session&#038;project=ASHG21&#038;id=odP3106&#038;title=Related%20Sessions">“Black Representation in Genomics Research (BRGR) Study of eQTLs in venous blood of 23andMe research participants with African ancestry”</a></li>
<li aria-level="2">Mon, Oct 18; 5:30-6:30pm ET</li>
<li aria-level="2">PrgmNr 3700<div id="attachment_29289" style="width: 1034px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" aria-describedby="caption-attachment-29289" src="https://blog-api.23andme.com/wp-content/uploads/2021/10/BRGR-ASHG-Poster-Kipper-1024x576.jpg" alt="" class="wp-image-29289 size-large" width="1024" height="576" srcset="https://blogcms.23andme.com/wp-content/uploads/2021/10/BRGR-ASHG-Poster-Kipper-1024x576.jpg 1024w, https://blogcms.23andme.com/wp-content/uploads/2021/10/BRGR-ASHG-Poster-Kipper-300x169.jpg 300w, https://blogcms.23andme.com/wp-content/uploads/2021/10/BRGR-ASHG-Poster-Kipper-768x432.jpg 768w, https://blogcms.23andme.com/wp-content/uploads/2021/10/BRGR-ASHG-Poster-Kipper-880x495.jpg 880w, https://blogcms.23andme.com/wp-content/uploads/2021/10/BRGR-ASHG-Poster-Kipper-1180x664.jpg 1180w" sizes="auto, (max-width: 1024px) 100vw, 1024px" />Kipper&#8217;s ASHG poster detailing preliminary data from the BRGR study.</div></li>
</ul>
<li aria-level="1">Jingchunzi Shi, PhD, Scientist II, Statistical Genetics</li>
<ul>
<li aria-level="2">Poster: “<a href="https://eventpilotadmin.com/web/page.php?page=Session&#038;project=ASHG21&#038;id=P3291">Improving Polygenic Risk Score Transferability by Leveraging GWAS Signals from Diverse Populations</a>”</li>
<li aria-level="2">Mon, Oct 18; 5:30-6:30pm ET</li>
<li aria-level="2">PrgmNr 3885<div id="attachment_29293" style="width: 970px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" aria-describedby="caption-attachment-29293" src="https://blog-api.23andme.com/wp-content/uploads/2021/10/ASHG2021_Multi_Population_PRS-.jpg" alt="" class="wp-image-29293 size-full" width="960" height="540" srcset="https://blogcms.23andme.com/wp-content/uploads/2021/10/ASHG2021_Multi_Population_PRS-.jpg 960w, https://blogcms.23andme.com/wp-content/uploads/2021/10/ASHG2021_Multi_Population_PRS--300x169.jpg 300w, https://blogcms.23andme.com/wp-content/uploads/2021/10/ASHG2021_Multi_Population_PRS--768x432.jpg 768w, https://blogcms.23andme.com/wp-content/uploads/2021/10/ASHG2021_Multi_Population_PRS--880x495.jpg 880w" sizes="auto, (max-width: 960px) 100vw, 960px" />Jingchunzi&#8217;s ASHG poster on improving polygenic risk scores for diverse populations.</div></li>
</ul>
</ul>
You can find out more about this years ASHG meeting <a href="https://www.ashg.org/meetings/2021meeting/">here</a>.

23andMe at ASHG 2021

Kipper Fletez-Brant, a computational biologist with our Therapeutics division, thought he’d be a physicist one day.
<img loading="lazy" decoding="async" src="https://blog-api.23andme.com/wp-content/uploads/2021/09/kipper_pic_2-196x300.jpg" alt="" class="alignright wp-image-29155 size-medium" width="196" height="300" srcset="https://blogcms.23andme.com/wp-content/uploads/2021/09/kipper_pic_2-196x300.jpg 196w, https://blogcms.23andme.com/wp-content/uploads/2021/09/kipper_pic_2-768x1176.jpg 768w, https://blogcms.23andme.com/wp-content/uploads/2021/09/kipper_pic_2-669x1024.jpg 669w, https://blogcms.23andme.com/wp-content/uploads/2021/09/kipper_pic_2-575x880.jpg 575w, https://blogcms.23andme.com/wp-content/uploads/2021/09/kipper_pic_2-771x1180.jpg 771w, https://blogcms.23andme.com/wp-content/uploads/2021/09/kipper_pic_2.jpg 1288w" sizes="auto, (max-width: 196px) 100vw, 196px" />Growing up in Phoenix, Arizona, Kipper escaped the heat reading “hard-sci-fi novels” with mind-bending plots woven with currently understood science about things like dark matter, wormholes, and the bending of the space-time continuum.
“But I realized at some point I liked living things and physics wasn&#8217;t the best fit,” he said.
Physics is sometimes referred to as the philosopher’s science. So perhaps it was appropriate that instead of a hard science, Kipper tackled other kinds of hard questions and studied philosophy as an undergraduate at St. John’s College.
After four years of wrestling with the eternal questions of life, he wanted something different.
“I wasn&#8217;t keen on the fact that there aren&#8217;t answers in philosophy,” Kipper said.
And that in turn motivated him to “think about science again.”
After graduation, while doing clerical work for an ophthalmologist, a doctor who noticed his aptitude and interest suggested he consider bioinformatics.
“I learned that was a way to put math and biology together,” Kipper said. “There was just one catch. I hadn’t studied either.”
It’s what motivated him to go back to school and break into the field. What followed was a Masters in Biotechnology giving him crash courses in computer science and molecular biology. He went on to work in a genetics lab and then spent time at the <a href="https://www.niaid.nih.gov/about/vrc">National Institutes of Health’s Vaccine Research Center</a>, working on data related to vaccine trials. Work that he’s been thinking about on a daily basis since the pandemic.
“Our mission was to understand, on a molecular level, what changes vaccines caused, so that we could make better, more effective vaccines,” Kipper said. 
The mission was important but Kipper wanted to lead research himself, and so he returned to school, but this time for a Ph.D. in Human Genetics from the <a href="https://www.hopkinsmedicine.org/institute-genetic-medicine/">McKusick-Nathans Institute of Genetic Medicine</a> at Johns Hopkins University’s School of Medicine and a Masters in Statistics from the School of Public Health.
Now three years into his work at 23andMe, Kipper is a critical part of the team of scientists and computational biologists looking for potential drug targets. One of the projects that Kipper is working on is a research effort called the<a href="https://blog.23andme.com/23andme-research/black-representation-in-research/"> Black Representation in Genomic Research Study</a> (BRGR) in which scientists are studying the genetics of gene expression with the aim of improving diversity in biomedical research. Ultimately, the aggregated and de-identified RNA and whole-genome sequencing data from the project will be made available to qualified researchers through the NIH’s dbGap. The hope is that this will assist those developing more effective drugs that can treat conditions and diseases affecting members of the Black community who have been underrepresented in traditional research.
It’s just one of many examples of what excites Kipper about working at 23andMe. For a scientist still fascinated by the potential of genetics to lead to novel therapies, he said being part of <a href="https://therapeutics.23andme.com/">23andMe’s Therapeutics </a>division offers rare opportunities.
“The genetic and phenotypic data at 23andMe is unparalleled,” Kipper said. “There is simply no other resource that compares to the 23andMe database in terms of the scale of phenotypes surveyed or size of the cohort.”
As part of an occasional series about scientists working at 23andMe, we sat down with Kipper to talk more about computational biology, 23andMe, and what it’s like being a scientist in 23andMe’s Therapeutics division.
<h6>Where did you grow up?</h6>
I grew up in Phoenix, AZ. I remember when it hit 122F in the early 90s. It grounded airplanes, many people had heatstroke. We didn&#8217;t have AC at the time, so my mom sprayed us with the hose (this motivated my parents to get AC)
<h6>What did you study as an undergrad?</h6>
I studied philosophy at St. John&#8217;s College, a small liberal arts college in Annapolis, Maryland. (It is directly across the street from the United States Naval Academy).
<h6>Did you always want to be a scientist?</h6>
Intermittently. As a child, I thought I might want to do physics because I read a lot of &#8220;hard&#8221; sci-fi where they talked about the physics of things like space travel. But I realized at some point I liked living things and physics wasn&#8217;t the best fit. I did philosophy because at least I thought about difficult things a lot, but I wasn&#8217;t keen on the fact that there aren&#8217;t answers in philosophy, which motivated me to think about science again.
<h6>Was your interest inspired by a person or a book or an experience?</h6>
After undergrad, I was working as an administrative assistant in a North Baltimore suburb for an ophthalmology office, and one of the doctors told me I should look at bioinformatics. I learned that was a way to put math and biology together. The catch was I hadn’t studied either. But that motivated me to look around for ways to break into the field.
<h6>Why did you get two master’s degrees (in Statistics and Biotechnology) and was there something that changed to prompt you to get your Ph.D. in human genetics?</h6>
I somehow talked my way into my first masters, in Biotechnology at Johns Hopkins, despite having a degree in philosophy and no scientific training. I was essentially making up for lost time. I studied computer science and molecular biology during this degree, while also interning as a laboratory technician in a molecular genetics lab. It really set me up for success, and after graduating I took a job as a data analyst at the National Institutes of Health’s (NIH) Vaccine Research Center, mainly working on datasets that came from participants in vaccine trials. Our mission was to understand, on a molecular level, what changes vaccines caused so that we could make better, more effective vaccines.
<h6>Why did you leave the NIH?</h6>
While the NIH was a great job with really smart people, I knew I wanted to lead research projects, and I did not have the training for that. I also missed working in genetics and genomics, and so I enrolled in the Human Genetics program at the McKusick-Nathans Institute of Genetic Medicine at the Johns Hopkins University School of Medicine. While there, I knew I needed serious training in statistics to match the biological training from my Ph.D. program, so I did my Ph.D. work with Kasper Hansen, a professor in the Department of Biostatistics in the School of Public Health, and also did a master&#8217;s degree in biostatistics. In addition, I was a fellow of the Maryland Genetics, Epidemiology and Medicine (MD-GEM) training program, where I also trained in genetic epidemiology. 
<h6>What are the kinds of questions or problems you like to study?</h6>
I really like difficult problems that don’t have clear answers and make you think in several disciplines at once. At the NIH, I developed a tool for doing quality control of vaccine data that uses statistical concepts typically used in geology. While a Ph.D. student, I worked on statistical methods to find genetic variants that impact what 3D structure DNA actually takes when it is in a cell.
<h6>What attracted you to working for 23andMe’s Therapeutics team?</h6>
At the NIH I was working very closely with clinical research, and I knew that after my Ph.D. I wanted to return to more translational work. 23andMe, where everything is based on genetics, was a natural choice for me. And to date, I have used every part of my training, from molecular genetics to epidemiology to statistics, to answer questions about how to take our genetic findings and identify drug targets using them. 
<h6>Could you explain a little bit about your job analyzing functional genomics data and how it plays a role in characterizing potential drug targets?</h6>
At 23andMe, everything we do starts with genetics.  We know which genetic variants are associated with which diseases. The problem is that knowing that some genetic variant is associated with a disease often tells you nothing about how the variant causes disease, nor what you might do about it. The Computational Biology group helps generate ideas about how diseases are caused by genetic variation, and which genes might be good drug targets, by using our genetic data in conjunction with other biological data, such as the gene expression profiling we did in the BRGR study. Specifically, we often ask questions about whether particular variants affect the expression or function of possible target genes — maybe a particular gene is over-expressed in some diseases with an unmet medical need, for example.
<h6>What is unique about working at 23andMe either in terms of the kind of data you’re working with or the culture?</h6>
The genetic and phenotypic data at 23andMe is unparalleled. There is simply no other resource that compares to the 23andMe database in terms of the scale of phenotypes surveyed or the size of the cohort. Many GWAS that we run yield signals seen in no other cohort. In this context, drug development is very exciting, in that how to use genetic information to hone in on a drug target is a topic of active research in the community. 23andMe Therapeutics is breaking ground on hard questions and is one of the leaders in this space.
<h6>How is what you’re doing now different from what you were doing at St. Johns, or different from other jobs you’ve had?</h6>
My role at 23andMe is closer to the drug/therapeutic development process than any other job I’ve had, which was a huge draw for me, to be honest. At Johns Hopkins, I worked on questions that were focused on understanding basic biology, and at the NIH I was downstream of the development process. Here I am actively helping the Therapeutics team find new targets.
<h6>What are your hopes for the work you are doing?</h6>
I am optimistic that we will find “the best” way to use genetics to inform drug discovery. Our comprehensive dataset allows us to target a wide variety of diseases, and I am hopeful we can make an impact on many of them and the lives of people living with those diseases.

Tackling Tough Problems with the 23andMe Therapeutics Team

We know you care about privacy, and we’ve been working hard to deliver on our promises of transparency and choice, even beyond your experience at 23andMe. 
This is why we’re excited to share that California recently enacted a new law to protect consumers’ genetic data privacy. We have worked hard with the <a href="https://geneticdataprotection.com/">Coalition for Genetic Data Protection</a> to make this happen in California, as well as <a href="https://le.utah.gov/xcode/Title13/Chapter60/13-60.html?v=C13-60_2021050520210505">Utah</a> and <a href="https://www.azleg.gov/viewdocument/?docName=https://www.azleg.gov/ars/44/08001.htm">Arizona</a> earlier this year, and we hope to see this legislation become a model for genetic privacy legislation nationally.<img loading="lazy" decoding="async" src="https://blog-api.23andme.com/wp-content/uploads/2020/04/cropped-23ANDME-LOGO.jpg" alt="" class="alignright wp-image-28236 size-medium" width="300" height="300" srcset="https://blogcms.23andme.com/wp-content/uploads/2020/04/cropped-23ANDME-LOGO.jpg 300w, https://blogcms.23andme.com/wp-content/uploads/2020/04/cropped-23ANDME-LOGO.jpg 150w, https://blogcms.23andme.com/wp-content/uploads/2020/04/cropped-23ANDME-LOGO.jpg 270w, https://blogcms.23andme.com/wp-content/uploads/2020/04/cropped-23ANDME-LOGO.jpg 192w, https://blogcms.23andme.com/wp-content/uploads/2020/04/cropped-23ANDME-LOGO.jpg 180w, https://blogcms.23andme.com/wp-content/uploads/2020/04/cropped-23ANDME-LOGO.jpg 32w, https://blogcms.23andme.com/wp-content/uploads/2020/04/cropped-23ANDME-LOGO.jpg 512w" sizes="auto, (max-width: 300px) 100vw, 300px" />
“We fundamentally believe that it&#8217;s our responsibility to protect our customers&#8217; data and ensure their privacy,” said Jacquie Cooke Haggarty, deputy general counsel, and privacy officer at 23andMe.  
We believe every consumer deserves the same level of genetic data privacy, and California’s new<a href="https://leginfo.legislature.ca.gov/faces/billTextClient.xhtml?bill_id=202120220SB41#:~:text=SB%2041%2C%20Umberg.,Privacy%3A%20genetic%20testing%20companies.&#038;text=This%20bill%20would%20require%20a,days%20of%20revocation%20of%20consent."> Genetic Information Privacy Act</a> (“GIPA”), signed by Governor Newsom on October 6, 2021, builds on industry best practices and existing consumer privacy protections adopted by the state two years ago under the California Consumer Privacy Act (“CCPA”). GIPA requires genetic testing services to provide consumers with transparency and choice, which are 23andMe’s core privacy principles that have guided our privacy program from the beginning. 
“That trust is built on a foundation of transparency and choice — our customers know that they are always in control of their data,” Jacquie said.
In 2018, 23andMe joined forces with the non-profit <a href="https://fpf.org/about/">Future of Privacy Forum</a> and worked alongside other personal genetic testing companies, including Ancestry.com and Helix, to develop the <a href="https://fpf.org/blog/privacy-best-practices-for-consumer-genetic-testing-services/">Privacy Best Practices for Consumer Genetic Testing Services</a>. The best practices offer a framework for protecting consumer genetic data, as well as guidelines for the collection, protection, sharing, and use of genetic data generated from consumer genetic testing. 
Now all consumers in California, Utah, and Arizona will be afforded the same level of privacy protection regardless of whether the genetic testing company with which they tested adheres to the best practices or not. Importantly, genetic testing companies include those that provide genetic interpretation services, too.   
The California, Utah, and Arizona laws include many of the same protections that 23andMe has long offered its customers, including:
<ul>
<li aria-level="1">Requiring separate express consent for genetic data to be: </li>
<ul>
<li aria-level="2">used for scientific research purposes</li>
<li aria-level="2">shared with a third party</li>
<li aria-level="2">used for marketing purposes</li>
</ul>
<li aria-level="1">If a customer opts in to research, offering a simple way to opt-out of research at any time</li>
<li aria-level="1">Giving customers a clear and easy way to close their accounts and delete their data, if they choose</li>
<li aria-level="1">Requiring destruction of a customer’s biological sample within 30 days of the customer’s request </li>
<li aria-level="1">Prohibiting genetic testing companies from sharing genetic data with employers or providers of insurance for any reason</li>
<li aria-level="1">Requiring genetic testing companies to provide clear and complete information about their privacy practices and protocols</li>
</ul>
You can learn more about 23andMe’s privacy policies<a href="https://www.23andme.com/privacy/"> here</a>.

California Expands Consumer Protections for Genetic Testing

This week, Anne Wojcicki, 23andMe’s CEO, and Co-Founder signed a letter, along with dozens of CEOs, making a commitment toward advancing equity and inclusion for employees and customers with disabilities. <img loading="lazy" decoding="async" class="alignright wp-image-30848 size-larger" src="http://35.88.189.111/wp-content/uploads/2022/02/DEI-Blog-1024x536-1-880x461.png" alt="" width="880" height="461" srcset="https://blogcms.23andme.com/wp-content/uploads/2022/02/DEI-Blog-1024x536-1-880x461.png 880w, https://blogcms.23andme.com/wp-content/uploads/2022/02/DEI-Blog-1024x536-1-300x157.png 300w, https://blogcms.23andme.com/wp-content/uploads/2022/02/DEI-Blog-1024x536-1-768x402.png 768w, https://blogcms.23andme.com/wp-content/uploads/2022/02/DEI-Blog-1024x536-1.png 1024w" sizes="auto, (max-width: 880px) 100vw, 880px" />
The move deepened the company’s ongoing commitment to diversity, equity, and inclusion through participating in the Disability Equality Index. The index offers a way to gauge the company’s policies and practices for employees and customers with disabilities in the coming years.
Administered by the non-profit group, <a href="https://www.aapd.com/about/">American Association of People with Disabilities</a> and <a href="https://disabilityin.org/who-we-are/about/">Disability:IN</a>, the index will offer the company — and those outside the company — a benchmark assessment for measures of inclusivity for those with disabilities. It will allow 23andMe to better see how inclusive our products and working environment are for people with disabilities. The benchmarking will begin next year.
As a company that prides itself in celebrating the shared humanity of all people, diversity, equity and inclusion are at 23andMe’s core. People who feel empowered to be their authentic selves make better employees and bring broader perspectives to the work they do. That, in turn, helps the kinds of products we make and ensures that what we do serves all our customers, no matter their ability.
“The world really can change. But the world changes because there are individuals who drive forward that change,” Anne Wojcicki said in <a href="https://www.youtube.com/watch?v=ctMLKTXqsmM&amp;t=194s">a discussion recently</a> about why making and following through with commitments toward diversity, equity, and inclusion are so important for the company.
“And so that’s the responsibility of 23andMe as an activist brand,” she said. “We have an opportunity, and frankly a responsibility, to lead. And there is absolutely this opportunity to drive forward a different, better, and more inclusive world &#8230;we’re going to try and lead by example.”
While 23andMe has made diversity, inclusion, and equity a priority, using the index in the coming years will allow 23andMe to deepen that commitment and it will offer ways of measuring our success and identifying areas for improvement.
For more information about the Disability Equity Index go <a href="https://disabilityin.org/what-we-do/disability-equality-index/">here</a>.

Latest Posts — Page 44