By L. Okey Onyejekwe Jr., MD, JD,  23andMe’s Vice President of Healthcare Operations and Medical Affairs
Why did we need a separate month for Black history? I’ve answered this question many times and heard it asked many times more. At its most innocuous, it’s a silly question. Yet it&#8217;s a dangerous one regardless of intent. For one, the health disparity data points that I’ll be reflecting on below—sobering by any account—won’t surprise you. You know them, at the very least by implication. Black people between 18 and 50 are two times more likely than whites to die from heart disease, and Black children are eight<a href="https://minorityhealth.hhs.gov/omh/browse.aspx?lvl=4&amp;lvlid=15"> times more likely</a> to die from asthma, etc.
I couldn’t shock you with the data even if I delivered it with lightning. Indeed, the implications of this question go far beyond “history.” So rather than trying to wow you with sobering statistics, or dignify the question with an answer, I thought I’d share why I’m unusually hopeful as we conclude this Black History Month.
<h2>A Reservoir of Hope</h2>
The perspectives I share here are those of a healthcare provider who happens also to be Black. Being Black in America requires drawing on an endless reservoir of hope of what could be, and not what is.
So hope is not new for me, even though the events of the past year tested that outlook. I saw a Black man murdered by police officers—his agonizing transition from a full life all the way to death captured on camera for eternity. I cried because he’s a son, and I have sons. I raged because it happened again, and I told you—we all have been telling you—that it would. But mostly I despaired at the fact that I know—we all know—that justice will not be served once again. That’s always the most painful part.
Then there was the Black man killed by white racist civilians for JWB (jogging while black). The killers got to go home and have dinner with family that evening, no questions asked, and for months afterward. And of course, there was the young woman, murdered by police in her own home. She’ll never get to write about her own experience as a Black healthcare professional. As always, no one will face justice for it. And there was so much more.
So how is it possible that I have any hope as a father of a boy who’s so full of life, another boy who loves running, and a daughter who too aspires to be a healthcare professional?

 <figure class="wp-block-image size-large is-style-default"><img loading="lazy" decoding="async" width="512" height="384" src="https://blogcms.23andme.com/wp-content/uploads/2021/02/Okey-and-kids-at-BLM-march.png" alt="" class="wp-image-28781" srcset="https://blogcms.23andme.com/wp-content/uploads/2021/02/Okey-and-kids-at-BLM-march.png 512w, https://blogcms.23andme.com/wp-content/uploads/2021/02/Okey-and-kids-at-BLM-march-300x225.png 300w" sizes="auto, (max-width: 512px) 100vw, 512px" /></figure>
 
<h2>An Inflection Point?</h2>
None of this was new to me, to us. The shock, if there was any, didn’t come from us. We’ve been crying out loud over this type of injustice for years. But in 2020, at least for a moment, it seemed like other people cared.
Will it last?  We did see that racism was <a href="https://www.ama-assn.org/delivering-care/health-equity/ama-racism-threat-public-health">finally recognized by the AMA</a> and other organizations as a public health threat for the first time ever.  The policy acknowledges that “the primary drivers of racial health inequity are systemic and structural racism” and that “racism and unconscious bias within medical research and health care delivery have caused and continue to cause harm to marginalized communities and society as a whole.” To one desperate to nail down a foundation on something hopeful, this was a hammer. A tool. Something I can actually build with.
Of course, there was another pandemic in 2020, also with disproportionate effects, killing Black people at <a href="https://covidtracking.com/race">1.6 times the rate of white people</a>. Research from 23andMe, the company where I work, found that Black customers who consented to participate in our research are <a href="https://blog.23andme.com/23andme-research/impact-disparities-of-covid-19/">80 percent more likely</a> than whites to be hospitalized from COVID-19. Beyond that, Black and other underrepresented communities are also much less likely to be included — or are much less willing to participate — in health research. That includes the <a href="https://www.nejm.org/doi/full/10.1056/NEJMp2021971">most recent clinical trials</a> for COVID-19 vaccines.
This kind of disparity is more than just the problem of Black people. It’s a recognized public health problem. In fact, it’s an unacceptable deviation from the standard of care.
<h2>Taking Action</h2>
The significance of this shift cannot be overstated. Even before the pandemic, there were concerted efforts to take action.
The National Institutes of Health&#8217;s <a href="http://allofus.nih.gov/">All of Us</a> Precision Medicine Initiative is recruiting a million Americans, particularly from underrepresented communities, for genetic health research. The Veteran&#8217;s Administration&#8217;s <a href="https://www.research.va.gov/mvp/">Million Veterans Program</a> is doing much the same.
23andMe has spent more than a decade focused on diversifying its research database to improve our study of diseases like Parkinson’s, within all populations. While we still have a long way to go, 23andMe now has one of the largest, if not the largest, groups of African Americans consented to participate in genetic research in the world. But these types of efforts can no longer be optional outliers. They must indeed become the norm if they are to be within the standard of care.
These efforts and others will lead to new insights into human biology, better and more equitable clinical care, and improved outcomes for everyone. But we still have so much more work to do. At 23andMe we pledged to <a href="https://www.23andme.com/black-lives-matter">hold ourselves accountable</a> to make improvements to ensure our people, products, and practices are more diverse, equitable, and inclusive.
It’s a pledge we could all make, especially right now. It amounts to doing more than just hoping for change. It means making a plan to change so that everyone benefits from the scientific insights we learn through research, and all of us have the chance for equitable healthcare.

23andMe Blog

23andMe Blog Team

Hope, Healthcare, and Black Lives

People who know Maurice Hayes know he&#8217;s passionate about science, healthcare, and prevention. It&#8217;s personal for him.<img loading="lazy" decoding="async" class="alignright size-medium wp-image-32741" src="http://35.88.189.111/wp-content/uploads/2024/03/Maurice-Hayes-219x300.jpg" alt="" width="219" height="300" srcset="https://blogcms.23andme.com/wp-content/uploads/2024/03/Maurice-Hayes-219x300.jpg 219w, https://blogcms.23andme.com/wp-content/uploads/2024/03/Maurice-Hayes.jpg 373w" sizes="auto, (max-width: 219px) 100vw, 219px" />
For three decades, he&#8217;s worked as an MRI technician in Atlanta, and almost every day, he sees people from all walks of life, all ages, and all ethnicities, who are there for one reason. They&#8217;re sick. And being a compassionate person, he can&#8217;t help but wonder:
&#8220;Why can&#8217;t we do more to find out how this could have been prevented?&#8221; Maurice asked.
Of course, lifestyle also plays a role, he said.
&#8220;I&#8217;m a big proponent of preventative medicine,&#8221; he said. &#8220;Some things could be dealt with through diet and exercise.&#8221;
But that&#8217;s not the whole story.
Part of staying healthy involves also knowing what your risks are for disease. Knowing that early gives you time to figure out &#8220;the best way to anticipate what is coming and have a plan,&#8221; Maurice said.
And that&#8217;s where science and research come in, he said. He believes that genetic research offers hope for finding the causes and cures for disease. That&#8217;s what attracted him to 23andMe, learning more about his ancestral roots, particularly his genetic connections to Africa.
There&#8217;s a lot of genetic research out there to be excited about already. And Maurice, who follows some of those developments, can see the potential. But he also knows that those breakthroughs don&#8217;t benefit everyone, mainly if you are Black. This is partly because most <a href="https://www.23andme.com/research/">genetic health research</a> is done in people of European descent.
&#8220;So when the studies are going on, most of these studies don&#8217;t include Black people,&#8221; Maurice said. &#8220;That means the data is just not there.&#8221;
The irony is that it is often people within the Black community who are hit the hardest by certain conditions. Yet, they are usually not well represented in studies of those conditions. So, of course, it&#8217;s personal. Maurice has had family members who&#8217;ve dealt with heart disease, lung disease, and cancer. Most recently, he had two close relatives die from COVID-related illnesses.
That&#8217;s why he&#8217;s participating in research, not just through 23andMe and its <a href="https://blog.23andme.com/23andme-research/black-representation-in-research/">Black Representation in Genomic Research</a> study — which aims to understand the biology connecting genetic variants to diseases — but also in the <a href="https://allofus.nih.gov/" target="_blank" rel="noopener">National Institutes of Health&#8217;s All of Us</a> study.
&#8220;There are not a lot of 50-something-year-old Black men who want to sign up to have their DNA checked because they&#8217;re too afraid of how that could be used in a bad way,&#8221; he said.
And there&#8217;s a reason for that. There&#8217;s some history. Still fresh in some people&#8217;s minds is the notorious <a href="https://www.cdc.gov/tuskegee/timeline.htm">Tuskegee Syphilis Study</a>. In the 40-year-long study, African American men with syphilis were left untreated for their illness so that researchers could watch the disease&#8217;s progression.
&#8220;When you say &#8216;Research&#8217; and &#8216;African Americans,&#8217; everybody puts in the horror stories,&#8221; Maurice said. &#8220;(That) is one reason they&#8217;re not doing well with vaccinations. (It&#8217;s) because there is a lack of trust.&#8221;
Winning back trust will be difficult, but it&#8217;s essential for the Black community to benefit from research, which is why he&#8217;s participating in it.
&#8220;I want to ensure that the data was more inclusive,&#8221; Maurice said. &#8220;It&#8217;s also personal to me because of my family history and some of the diseases that we have, and I wish there was more research in that area.&#8221;
But it&#8217;s not just about him and his family. Seeing sick people day in and day out who might benefit from new genetic research motivates his interest in participating in research.
&#8220;I wanted to inspire other minorities to get to know themselves better. Let&#8217;s seek out those points of intersection. Together, we create a beautiful tapestry to be celebrated for all its diversity. Let&#8217;s begin anew.&#8221;

Inspiring Others to Participate in Research

As part of 23andMe’s ongoing effort to improve diversity in biomedical research, we recently began work on our Black Representation in Genetic Research study. This study aims to understand the biology connecting genetic variants to diseases.
To support the study, 23andMe recruited just under 1,000 customers with African ancestry who consented to participate in the study. The project, supported with funding from GlaxoSmithKline (GSK), involves the sequencing of RNA and DNA to study the genetics of gene expression. These data are crucial for understanding the role of genetic variants identified through genome-wide association studies (GWAS) and how they may influence disease through changes in gene expression.
This effort is one of several 23andMe has undertaken over the last decade to help remedy research inequities. Currently, the 23andMe database includes one of the largest groups of people with African ancestry who have consented to participate in genetic research. Yet, there is still much work to be done. While the number of people of African descent participating in our research is large, it still pales in comparison to the numbers of people of European ancestry.
With more people of African ancestry participating in research our scientists will have more opportunities to find genetic associations relevant to this group and to translate genetic associations into insights meaningful to support the development of new therapies. In this case, RNA sequencing data from under-represented populations could help us connect or “map” a genetic variant that is associated with a disease to how that variant may or may not be relevant for the expression of a particular gene.
<h6>Everyone Should Benefit from Genetic Research</h6>
Part of 23andMe’s mission is to ensure that everyone — no matter their ethnicity — benefits from the insights derived from the human genome. We’re committed to that goal.
But it’s a fact that the Black community is dramatically underrepresented in <a href="https://www.23andme.com/dna-health-ancestry">genetic health</a> research, meaning they don’t equally benefit from insights gleaned from that work. That’s not acceptable to us.
We hope that improving diversity in our research and clinical trials will help accelerate scientific discoveries and medical treatments that have been informed by a more thorough understanding of diseases experienced by the Black community.
The Black Representation in Genetic Research (BRGR) program is another step we’re taking to address this problem.
<h6>Sequencing</h6>
For this study, 23andMe is extracting RNA from whole blood and sequencing it. We will also sequence consented study participants’ whole genomes using the saliva samples they originally submitted to 23andMe.
We’ll use this data to better understand “gene expression” — how a gene turns on or off and guides the translation of RNA into proteins. This kind of “functional data” will help scientists understand the connection between a variant identified in a GWAS and one of its nearby genes. Making that kind of connection is called “variant-to-gene mapping.” 
<h6>More Diverse Representation</h6>
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, even for health conditions that disproportionally impact non-European populations. Sometimes the results from a genome-wide association study are relevant to all ethnicities, but not always. In those cases, researchers need to have more diverse data that are more broadly useful for people of all ethnicities.
That’s why over the last decade, 23andMe has taken steps to improve the diversity of our research. Whether it was through the<a href="https://www.23andme.com/roots/"> Roots into the Future Project</a>, or 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> <a href="https://www.23andme.com/global-genetics/">the Global Genetics Project</a>, as well as the <a href="https://research.23andme.com/populations-collaborations/">Populations Research Collaborations</a> program —  each project was meant to enhance the diversity in our research and our product.
<h6>Beyond 23andMe</h6>
This work has in turn helped not only to improve the diversity of our research but also the work of others.
The whole-genome sequence data from those who consented to participate in our African American Sequencing project — aggregated and de-identified — was made available for free to qualified researchers from academia or biotech labs through the Database of Genotype and Phenotypes (<a href="https://www.ncbi.nlm.nih.gov/gap/">dbGaP</a>). This is a repository sponsored by the <a href="https://www.nih.gov/">National Institutes of Health (NIH)</a>. The NIH’s dbGaP archives and distributes data from studies investigating the relationship of genotype and phenotype in humans.
In that same way, 23andMe will make available the RNA and whole-genome sequencing data from the Black Representation in Genetic Research — aggregated and de-identified — to qualified researchers, again using the NIH’s dbGaP.
By sharing the data with the broader biomedical community, 23andMe hopes to encourage others to work toward making significant discoveries that will benefit the Black community.
<h6>A Little History</h6>
We can’t talk about the lack of representation in genetic health research without talking about history, even when that history is unjust.
The effort to become more inclusive in genetic health research must overcome understandable distrust from communities that have in the past been abused in the name of science.
There are many examples but one of the most infamous and shameful was the<a href="https://www.cdc.gov/tuskegee/timeline.htm"> Tuskegee Syphilis Study</a>, which involved a 40-year study of African-American men with syphilis who were left untreated for their illness as a way to research the progression of the disease. Researchers never informed participants of what was happening, and never gave them an antibiotic that could have been used to treat them.
<h6>The Common Rule</h6>
Once the shocking mistreatment came to light federal regulators and ethicists came together to create what has become the foundation for ethics in research on humans. Known as “<a href="https://www.hhs.gov/ohrp/regulations-and-policy/regulations/common-rule/index.html">The Common Rule</a>,” the rules were codified for the protection of participants in biomedical research. Some of the core principles include voluntary informed consent, protection for potentially vulnerable populations, and protecting those research participants from harm.
That work also led to the creation of what are called Institutional Review Boards (IRBs), independent bodies that oversee research to ensure it adheres to ethical principles.
<h6>23andMe’s Ethical Approach to Research</h6>
Choice and transparency are fundamental to 23andMe’s research model, and our research program is overseen by an external IRB.
This represents a long-term commitment by 23andMe. Before we ever launched our participant-based research program, we worked early on with the Ethical, Legal, and Social Implications (ELSI) program of the <a href="https://www.genome.gov/">National Human Genome Research Institute </a>(NHGRI), which had been founded in 1990 as part of the Human Genome Project.
The ELSI program was created to identify and address issues that genomics research could trigger with regard to impacting people, families, and society. 23andMe scientists engaged with this community early on, which helped us understand the importance of building strong ethical guidelines and demonstrating our scientific rigor.
In 2009, to ensure we had third-party ethical oversight of our research, we approached an external ethics committee (also called an Institutional Review Board, or “IRB”) and worked together to create an entirely new model of research that both respects and protects our research participants as well as ensure that we have a clear and transparent informed consent for research participation. And we’ve now published over 170 peer-reviewed research papers that have been cited over 10,000 times. This ethics-driven approach has been behind our decision-making over the years.
As a part of our approach, we also work to share with those who participate in research any findings we make. In fact, we aim to make all of our publications accessible to anyone interested at no cost. For the BRGR study, we expect to be finished with the data analysis by this summer at which time we plan to share those findings with participants during a webinar.
The ultimate goal is to create a resource for scientists to better identify unique genetic determinants of disease and develop treatments to benefit the Black community.

23andMe’s Black Representation in Genetic Research Study

Meet Melinda King, 23andMe’s new Director of Diversity, Equity, and Inclusion (DEI) and People Business Partner.
Melinda previously served as an Assistant Vice President at the University of Alabama, her alma mater. Her responsibilities included leading the University&#8217;s career center and heading up Diversity, Equity, and Inclusion for the University&#8217;s Division of Student Life. She has more than two decades of human resources experience, working with companies in Texas, Pennsylvania, Minnesota, and Florida. <img loading="lazy" decoding="async" class="alignright wp-image-28768 size-medium" src="http://35.88.189.111/wp-content/uploads/2021/02/mel2-300x283.jpeg" alt="" width="300" height="283" srcset="https://blogcms.23andme.com/wp-content/uploads/2021/02/mel2-300x283.jpeg 300w, https://blogcms.23andme.com/wp-content/uploads/2021/02/mel2-1024x967.jpeg 1024w, https://blogcms.23andme.com/wp-content/uploads/2021/02/mel2-768x725.jpeg 768w, https://blogcms.23andme.com/wp-content/uploads/2021/02/mel2-880x831.jpeg 880w, https://blogcms.23andme.com/wp-content/uploads/2021/02/mel2-1180x1114.jpeg 1180w, https://blogcms.23andme.com/wp-content/uploads/2021/02/mel2.jpeg 1350w" sizes="auto, (max-width: 300px) 100vw, 300px" />
Melinda&#8217;s decision to come out west and work with 23andMe had a lot to do with last year&#8217;s events and <a href="https://www.23andme.com/black-lives-matter">a letter</a> written by our founder and CEO Anne Wojcicki. The letter came in the wake of the Black Lives Matter demonstrations sparked by the killing of George Floyd. In it, Anne acknowledged 23andMe&#8217;s own failings, and she pledged that 23andMe would make its hiring practices and its products more inclusive.&nbsp;
For Melinda, it was a refreshingly candid response, and she reached out to Anne directly on LinkedIn. In the months since then, 23andMe has started to make <a href="https://blog.23andme.com/articles/diversity-equity-inclusion/">progress</a>. (More on that to come next month.) Melinda is going to help us continue our DEI work. As she says, this kind of effort isn&#8217;t a one-off project that you do and then move on. It&#8217;s a long-term commitment to change company culture.&nbsp;
We sat down with Melinda to chat about her, her role at 23andMe, and what she hopes to achieve. As we look back at 2020, we can see some silver linings. The problematic year pushed important issues to the forefront that needed to be addressed, including improving diversity, equity, and inclusion in hiring, our employees’ experience, our product, our health research, and our community impact.
<h6>What drew you to 23andMe?&nbsp;</h6>
“The opportunity to combine my passion for DEI with the ability to work for an organization that is improving health care outcomes, especially for those in marginalized communities. Really excited to be a part of work that has a broader impact.”
<h6>Could you add more details about reading <a href="https://www.23andme.com/black-lives-matter">Anne’s letter regarding</a> the Black Lives Matter movement and how it affected your decision to come here?</h6>
“After the George Floyd murder, I decided I needed to be more solution-driven in the current movement regarding the impact of systemic racism and how it has manifested itself around police brutality for black and brown bodies. I&nbsp; had grown skeptical regarding the number of organizations that were making bold public statements around their commitment to Diversity. When I saw Anne’s willingness to call her own company out, I found it refreshing that she was willing to say her organization was part of the problem. I felt this is an organization that I want to connect with to see how I can assist them with their DEI journey.&nbsp;”
<h6>As the Director of DEI, what do you hope people outside the company take away from your hire? What about those inside the company?</h6>
“DEI work is not a one-person job, but it is important to have someone to ensure the work that is done is strategic and sustainable. My hope is individuals within and outside the company will view this role as a long-term commitment to having a diverse workforce, with equitable opportunities and an inclusive culture.”
<h6>Can you talk about 2020 and whether you think that it marked an inflection point for companies looking more seriously at DEI in the workplace?&nbsp;</h6>
“Absolutely, 2020 brought the issues of systemic racism into everyone’s living room. It was further complicated by COVID. You really could not escape what was happening around the country and the impact it was having on the workforce. Organizations that normally would stay away from conversations about social justice had no choice but to address it because people could not separate what was happening to others from their own lives. For a lot of leaders, it was the first time they really understood the impact inequalities have on people they work with and care about. They realized they could no longer stand on the sidelines.”
<h6>Do you see a nexus between DEI in the workplace and what 23andMe is trying to do to <a href="https://blog.23andme.com/articles/improving-research-diversity">improve diversity in its research</a>?</h6>
“I do. We all know there is a gap between the disparities in health care outcomes for minorities and other marginalized communities. Research is one of the vehicles to close that gap. It will be important for 23andMe to engage with those communities to better understand those medical conditions and to offer solutions for those most impacted.”
<h6>What are some things you can share about the coming year and what you hope to focus on?&nbsp;</h6>
“I really just want to continue the trend of turning words into action around this important work. To make certain we look at all of our major decisions through a DEI lens.”

The New Director of Diversity, Equity, and Inclusion at 23andMe

It started with bad sinus infections, then regular bouts of bronchitis, a seasonal cycle that gradually worsened over three decades.
About ten years ago, this cycle evolved into <a href="https://blog.23andme.com/articles/study-on-pneumonia">pneumonia</a>, putting Claudia, now a 67-year-old mother and grandmother in Seattle, in the ICU for a few days.
&#8220;I understand the signs now, but the first time it happened, I had this pain around the chest, a bad cough and cold,&#8221; she said. &#8220;I felt uncomfortable.&#8221;
<img loading="lazy" decoding="async" class="aligncenter size-full wp-image-29777" src="http://35.88.189.111/wp-content/uploads/2022/05/Claudia-and-Vern-Feature-Image.png" alt="" width="1853" height="1806" srcset="https://blogcms.23andme.com/wp-content/uploads/2022/05/Claudia-and-Vern-Feature-Image.png 1853w, https://blogcms.23andme.com/wp-content/uploads/2022/05/Claudia-and-Vern-Feature-Image-300x292.png 300w, https://blogcms.23andme.com/wp-content/uploads/2022/05/Claudia-and-Vern-Feature-Image-768x749.png 768w, https://blogcms.23andme.com/wp-content/uploads/2022/05/Claudia-and-Vern-Feature-Image-1024x998.png 1024w, https://blogcms.23andme.com/wp-content/uploads/2022/05/Claudia-and-Vern-Feature-Image-880x858.png 880w, https://blogcms.23andme.com/wp-content/uploads/2022/05/Claudia-and-Vern-Feature-Image-1180x1150.png 1180w" sizes="auto, (max-width: 1853px) 100vw, 1853px" />
<h2>A Medical Mystery</h2>
Doctors thought she might be having a heart attack, but X-rays of her lungs indicated pneumonia. That was about ten years ago, and now Claudia can discern the pattern as the illness comes on, which often starts with cold symptoms.
But even after that, she simply didn&#8217;t know why it was happening to her. Why was she so susceptible to sinus infections, bronchitis, and, worst of all, pneumonia? Why did she have trouble breathing sometimes? And neither did her doctors.
In her 30s, when she first started having difficulty catching her breath, she went to a pulmonary specialist who did a battery of tests. One of her doctors suggested that she had exercise-induced asthma. He gave her an inhaler. But the inhaler never seemed to help. Another doctor said that perhaps Claudia wasn&#8217;t doing enough exercise. She felt some of those treating her but thought it was all in her head. Although she has exercised regularly since her early 20s, she was told that perhaps she wasn’t exercising enough.
But not long ago, Claudia and her doctor solved the decades-long medical mystery with a bit of help from her 23andMe results.
&#8220;So, I&#8217;ve probably had this all along,&#8221; she said. &#8220;But if it hadn&#8217;t been for 23andMe, I would still be floundering.&#8221;
<h2>An Alpha</h2>
Claudia is an &#8220;Alpha,&#8221; as people with her condition sometimes call themselves. She has<a href="https://www.nhlbi.nih.gov/health-topics/alpha-1-antitrypsin-deficiency"> alpha-1 antitrypsin deficiency</a> (AATD), a genetic disease that affects an estimated<a href="https://www.alphanet.org/what-is-alpha-1/"> 120,000 Americans</a>, but only about six percent of those with AATD are correctly diagnosed. The condition decreases levels of the alpha-1 antitrypsin protein, leading to damage to the lungs and liver.
23andMe&#8217;s Alpha-1 Antitrypsin Deficiency Genetic Health Risk Report* looks at the two most common variants linked to this deficiency, the PI*Z and PI*S variants of the SERPINA1 gene. Claudia saw in her report that she had two copies of the PI*Z variant, which put her at an increased risk of developing the lung and liver disease associated with AATD.
But when she first saw this, it didn&#8217;t register. She&#8217;d never heard of the condition before, and even though she saw that it could impact a person&#8217;s lungs, she thought that if it were an issue, her doctor would have noted it.
Meanwhile, various doctors tried to figure out what was going on. She had taken the nurse&#8217;s advice during another pneumonia treatment. The nurse told her there was likely something causing this recurrent condition. She went through several tests and consulted with a pulmonologist, who couldn&#8217;t pinpoint what was wrong.
<h2>23andMe’s Report</h2>
During this period of frustration, she thought back on the 23andMe report. The report noted that one of her symptoms, shortness of breath, was included in the list of symptoms associated with AATD. She showed her doctor the report and asked if he could test her for the condition. The test results came back that she did indeed have AATD. After all those years of not knowing, now she understood.
&#8220;Although there is no cure, I now know why I get out of breath and bouts of pneumonia,&#8221; Claudia said.
<h2>Taking Action</h2>
Beyond the respiratory symptoms, AATD can also damage the liver. Claudia learned from her doctor that her liver levels were high. It surprised her, so now her liver function is regularly checked.
She&#8217;s under the care of a liver specialist and a pulmonologist at the University of Washington. They are monitoring her levels. Claudia takes vitamins to keep her immune system up. Doctors also prescribe medication to help prevent infections in her lungs and bronchial tubes. She takes care of herself.
Using resources from the Alpha-1 Foundation, she has identified two AATD specialists, one in Portland. She found another in Sacramento. Claudia is also trying to get her kids and grandkids tested. She wants to help potentially save them from the years of struggling she had to endure.
But for her 23andMe report, she said, &#8220;I would never have discovered this.&#8221;
<hr />
*The 23andMe PGS test uses qualitative genotyping to detect select clinically relevant variants in the genomic DNA of adults from saliva to report and interpret <a href="https://www.23andme.com/dna-health-ancestry">genetic health risks</a>. It is not intended to diagnose any disease. Your ethnicity may affect the relevance of each report and how your genetic health risk results are interpreted. Each genetic health risk report describes if a person has variants associated with a higher risk of developing a disease but does not describe a person’s overall risk of developing the disease. The test is not intended to tell you anything about your current state of health or to be used to make medical decisions, including whether or not you should take a medication, how much of a medication you should take, or determine any treatment. The Alpha-1 Antitrypsin (AAT) Deficiency genetic health risk report is indicated for reporting the PI*Z and PI*S variants in the SERPINA1 gene and describes if a person has variants associated with AAT deficiency and a higher risk for lung and liver disease. The variants included in this report are most common and best studied in people of European descent.

Help Solving A Personal Medical Mystery

February marks a time to remember and celebrate people of the African diaspora. To kick off a Black History Month of reflection, we’d like to highlight some of the projects 23andMe has been working on to specifically address disparities in biomedical and genetic research for people of African ancestry.
Research shows that <a href="https://www.nature.com/articles/s41586-019-1310-4">genetic studies that include diverse, multi-ethnic participants</a> have a higher chance of discovering important genetic variants associated with diseases. Those associations would have been missed in studies that focus only on one homogenous group.
<h6>We Need to Do Better</h6>
Despite this, as of 2019, <a href="https://www.cell.com/cell/fulltext/S0092-8674(19)30231-4">only two percent of participants in genome-wide association studies</a> around the world were people of African ancestry. Additionally, <a href="https://www.23andme.com/dna-health-ancestry">genetic risk prediction</a> scores, which will be instrumental in the future of personalized medicine, need to take ancestry into account. A risk score developed for one population may not be as accurate for another, exacerbating already existing health disparities for African Americans.
But it’s not enough for us to wait for others to fix the problem. As our <a href="https://www.23andme.com/black-lives-matter">CEO Anne Wojcicki stated last June</a>, “We absolutely have the potential to be better. Despite our efforts, I have to honestly say that we are also part of the problem.”
<h6>Some History</h6>
Over the years, we have made an effort to ensure our product and research are relevant to those of African ancestry. Here is a snapshot of our progress over the last decade:
2011: We launched our <a href="https://www.23andme.com/roots/">Roots into the Future</a> project to recruit 10,000 African Americans to participate in research.<img loading="lazy" decoding="async" class="alignright size-medium wp-image-9427" src="https://blog-api.23andme.com/wp-content/uploads/2011/07/RootsLogo-300x300.png" alt="" width="300" height="300" srcset="https://blogcms.23andme.com/wp-content/uploads/2011/07/RootsLogo-300x300.png 300w, https://blogcms.23andme.com/wp-content/uploads/2011/07/RootsLogo-150x150.png 150w, https://blogcms.23andme.com/wp-content/uploads/2011/07/RootsLogo-768x768.png 768w, https://blogcms.23andme.com/wp-content/uploads/2011/07/RootsLogo-1024x1024.png 1024w, https://blogcms.23andme.com/wp-content/uploads/2011/07/RootsLogo-880x880.png 880w, https://blogcms.23andme.com/wp-content/uploads/2011/07/RootsLogo-271x271.png 271w, https://blogcms.23andme.com/wp-content/uploads/2011/07/RootsLogo-372x372.png 372w, https://blogcms.23andme.com/wp-content/uploads/2011/07/RootsLogo-574x574.png 574w, https://blogcms.23andme.com/wp-content/uploads/2011/07/RootsLogo-980x980.png 980w, https://blogcms.23andme.com/wp-content/uploads/2011/07/RootsLogo.png 1050w" sizes="auto, (max-width: 300px) 100vw, 300px" />
2013: We launched our first African Ancestry Project, which recruited people with four grandparents from Sub-Saharan Africa.
2014: With this additional data from people of African ancestry, we published <a href="http://www.cell.com/ajhg/abstract/S0002-9297%2814%2900476-5">the first large-scale study of genetic ancestry in the United States</a> that reflects historical migrations.
2015: Using external research, we launched our Health service with a report for sickle cell anemia and a report for beta-thalassemia and related hemoglobinopathies, among others. Both of these conditions are highly relevant for people with African ancestry.
2016: We reached the milestone of 45,000 African Americans participating in 23andMe research.
2016: We <a href="https://blog.23andme.com/articles/23andme-scientists-improving-diversity-in-genetic-research/">received a National Institutes of Health (NIH) grant</a> to help us develop a new analysis pipeline that may alleviate disparities in research.
2016: We launched the <a href="https://www.23andme.com/africa-project/">African Genetics Project</a>, further recruiting individuals with ancestry from one of 16 African countries, expanding our recruitment outside of Sub-Saharan African ancestry.<img loading="lazy" decoding="async" class="alignright size-medium wp-image-25259" src="https://blog-api.23andme.com/wp-content/uploads/2017/01/05242016_ig_ad_3-300x300.jpg" alt="" width="300" height="300" srcset="https://blogcms.23andme.com/wp-content/uploads/2017/01/05242016_ig_ad_3-300x300.jpg 300w, https://blogcms.23andme.com/wp-content/uploads/2017/01/05242016_ig_ad_3-150x150.jpg 150w, https://blogcms.23andme.com/wp-content/uploads/2017/01/05242016_ig_ad_3-768x768.jpg 768w, https://blogcms.23andme.com/wp-content/uploads/2017/01/05242016_ig_ad_3-1024x1024.jpg 1024w, https://blogcms.23andme.com/wp-content/uploads/2017/01/05242016_ig_ad_3-880x880.jpg 880w, https://blogcms.23andme.com/wp-content/uploads/2017/01/05242016_ig_ad_3-271x271.jpg 271w, https://blogcms.23andme.com/wp-content/uploads/2017/01/05242016_ig_ad_3-372x372.jpg 372w, https://blogcms.23andme.com/wp-content/uploads/2017/01/05242016_ig_ad_3-574x574.jpg 574w, https://blogcms.23andme.com/wp-content/uploads/2017/01/05242016_ig_ad_3-980x980.jpg 980w, https://blogcms.23andme.com/wp-content/uploads/2017/01/05242016_ig_ad_3.jpg 1080w" sizes="auto, (max-width: 300px) 100vw, 300px" />
2016: We launched the <a href="https://blog.23andme.com/articles/african-american-sequencing-project/">African American Sequencing Project</a>, which also received funding from the NIH, to create a genomic reference panel that was shared with the broader scientific community for research.
2017: We launched the <a href="https://blog.23andme.com/articles/global-genetics-project/">Global Genetics Project</a>, further recruiting individuals underrepresented in genomics research, including 45 countries in Africa.
2018: We launched our <a href="https://blog.23andme.com/articles/23andmes-populations-collaborations/">Populations Collaborations Program</a>, which partners with academic researchers working across the globe to genotype people in communities who are underrepresented in genetics research, including Angola, Madagascar, and the Democratic Republic of the Congo.
2018: Thanks to contributions from our African Genetics Project and Populations Collaborations Program, we <a href="https://blog.23andme.com/articles/new-african-east-asian-details/">updated our Ancestry Composition report</a> to now reflect nine additional ancestry regions within Africa.
2018: Using external research, we developed a health report for G6PD deficiency, a blood disorder that can affect one in 10 African American men.
2019: We reached the milestone of 295,000 African Americans participating in 23andMe research, which is six times our cohort size just four years prior!
2019: The de-identified data from the African American Sequencing Project was made available to qualified researchers through the <a href="https://www.ncbi.nlm.nih.gov/">National Center for Biotechnology Information’s database of Genotypes and Phenotypes (dbGaP)</a>, allowing other qualified researchers to improve the accuracy of their genetic research on people of African descent.
2019: Using external research, we developed a report for TTR-related hereditary amyloidosis.  About one in 28 African Americans is estimated to have a gene variant that predisposes to this heart condition.
2020: We expanded our Global Genetics Project to specifically recruit from subregions within Nigeria.
<img loading="lazy" decoding="async" class="alignright size-medium wp-image-27481" src="https://blog-api.23andme.com/wp-content/uploads/2019/09/GGP-face-asset-1-300x300.png" alt="" width="300" height="300" srcset="https://blogcms.23andme.com/wp-content/uploads/2019/09/GGP-face-asset-1-300x300.png 300w, https://blogcms.23andme.com/wp-content/uploads/2019/09/GGP-face-asset-1-150x150.png 150w, https://blogcms.23andme.com/wp-content/uploads/2019/09/GGP-face-asset-1-768x768.png 768w, https://blogcms.23andme.com/wp-content/uploads/2019/09/GGP-face-asset-1-1024x1024.png 1024w, https://blogcms.23andme.com/wp-content/uploads/2019/09/GGP-face-asset-1-880x880.png 880w, https://blogcms.23andme.com/wp-content/uploads/2019/09/GGP-face-asset-1-271x271.png 271w, https://blogcms.23andme.com/wp-content/uploads/2019/09/GGP-face-asset-1-372x372.png 372w, https://blogcms.23andme.com/wp-content/uploads/2019/09/GGP-face-asset-1-574x574.png 574w, https://blogcms.23andme.com/wp-content/uploads/2019/09/GGP-face-asset-1-980x980.png 980w, https://blogcms.23andme.com/wp-content/uploads/2019/09/GGP-face-asset-1.png 1080w" sizes="auto, (max-width: 300px) 100vw, 300px" />2020: We launched our Black Representation in Genetic Research study, which will conduct RNA sequencing that will also be made publicly available to qualified researchers when complete.
2020: Our <a href="https://research.23andme.com/research-innovation-collaborations/">Research Innovations Collaborations program</a> made a specific call for proposals that are of high significance for underrepresented populations, including groups with African ancestry, in order to further address health disparities.
2020: Using external research, we developed a report for APOL1-related chronic kidney disease. Chronic kidney disease (CKD) is common and underdiagnosed, and the risk for severe disease is about three times higher in African Americans. About one in eight African Americans has a genetic predisposition for CKD due to variants in the APOL1 gene.
2021: 23andMe now has one of, if not the largest research cohort of genotyped and phenotyped people of African ancestry, with hundreds of thousands of individuals consenting to participate in research.
<h6>Studies Relevant to the Black Community</h6>
Because of these recruitment efforts, 23andMe has already been able to conduct health-related genome-wide association studies specific to people with African ancestry for example around <a href="https://link.springer.com/article/10.1007/s00439-017-1836-1">uterine fibroids</a> and <a href="https://www.nature.com/articles/s41588-018-0307-5">alcohol and tobacco use</a>. This research may also help us develop more health reports that are particularly important for this group. Foundational studies like these are key to reducing disparities in health care in the future.
Thanks to this research, we have also learned more about human history and migration, and can now match customers to over 150 subregions within Africa. We also r<a href="https://blog.23andme.com/articles/transatlantic-slave-trade-paper/">ecently published one of the most comprehensive investigations of the genomic consequences of the transatlantic slave trade</a> ever done in the American Journal of Human Genetics.
<img loading="lazy" decoding="async" class="aligncenter wp-image-30848 size-full" src="http://35.88.189.111/wp-content/uploads/2022/02/DEI-Blog-1024x536-1.png" alt="" width="1024" height="536" srcset="https://blogcms.23andme.com/wp-content/uploads/2022/02/DEI-Blog-1024x536-1.png 1024w, 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-1024x536-1-880x461.png 880w" sizes="auto, (max-width: 1024px) 100vw, 1024px" />And this is only the beginning. With all this new data, the next few years should see a slew of new studies of particular interest and relevance to those of African ancestry. In addition to improving the inclusivity of our research and product, we are also committed to Diversity Equity and Inclusion across the board. That includes our hiring practices and employee experience, as well as community impact. And as Anne said, we’re asking that our customers hold us accountable. So keep checking back to make sure we’re advancing genetic research for all people, regardless of their ancestry.
<hr />
*The 23andMe PGS test uses qualitative genotyping to detect select clinically relevant variants in the genomic DNA of adults from saliva for the purpose of reporting and interpreting genetic health risks and reporting carrier status. It is not intended to diagnose any disease. Your ethnicity may affect the relevance of each report and how your genetic health risk results are interpreted. Each genetic health risk report describes if a person has variants associated with a higher risk of developing a disease, but does not describe a person’s overall risk of developing the disease. The test is not intended to tell you anything about your current state of health, or to be used to make medical decisions, including whether or not you should take a medication, how much of a medication you should take, or determine any treatment. Our carrier status reports can be used to determine carrier status, but cannot determine if you have two copies of any genetic variant. These carrier reports are not intended to tell you anything about your risk for developing a disease in the future, the health of your fetus, or your newborn child&#8217;s risk of developing a particular disease later in life. For certain conditions, we provide a single report that includes information on both carrier status and genetic health risk. For important information and limitations regarding each genetic health risk report and carrier status report, visit  <a href="https://www.23andme.com/test-info/">https://www.23andme.com/test-info/</a>.

Reflecting on Improving Diversity in 23andMe Research for Black History Month

Healthcare providers are used to the unexpected from patients showing up in the clinic: A scan ordered for liver symptoms might reveal a spot in the lungs. Irregular findings on a blood test during an annual physical exam might lead to follow-up tests for leukemia.&nbsp;



But what happens when a DNA test gives your patient a surprising result about family relationships? 



More surprises are being revealed with more people engaging in direct-to-consumer tests like 23andMe that share information about genetic relationships between customers. 



If you work with a patient who comes into the clinic with a surprise DNA family discovery, below are a few questions you should ask yourself to help your patient navigate this unexpected discovery. <code></code>



<h2 class="wp-block-heading" id="h-how-is-this-affecting-my-patient">How is this affecting my patient?</h2>



<figure class="wp-block-image alignright"><img loading="lazy" decoding="async" width="300" height="300" src="http://35.88.189.111/wp-content/uploads/2017/03/dna-300x300.png" alt="An illustration showing a double helix strand of DNA" class="wp-image-25152" srcset="https://blogcms.23andme.com/wp-content/uploads/2017/03/dna-300x300.png 300w, https://blogcms.23andme.com/wp-content/uploads/2017/03/dna-150x150.png 150w, https://blogcms.23andme.com/wp-content/uploads/2017/03/dna-271x271.png 271w, https://blogcms.23andme.com/wp-content/uploads/2017/03/dna-372x372.png 372w, https://blogcms.23andme.com/wp-content/uploads/2017/03/dna-574x574.png 574w, https://blogcms.23andme.com/wp-content/uploads/2017/03/dna.png 600w" sizes="auto, (max-width: 300px) 100vw, 300px" /></figure>



Surprise findings of family relationships uncovered by a <a href="https://www.23andme.com/">DNA test</a> can have an emotional impact, and the discovery could impact your patient’s health. 



Probably the most dramatic impact would be if a patient discovered through DNA testing that their parents are not their biological parents. To handle such a discovery, a healthcare provider can offer understanding and grief support. 



Beyond that potentially traumatic experience are other surprises that could impact a person’s sense of identity. For instance, a patient could learn that the ethnicity they have always identified with is different. Not everyone is quick to adjust to unexpected changes in the way they <a href="https://slate.com/technology/2020/07/dna-test-ancestry-results-identity.html">self-identify in the world</a>. 



However, perhaps most relevant for a healthcare provider is that discovering new genetic connections would change a patient’s reported family health history, a cornerstone for many medical records. A patient may be forced to disregard their family medical history and be unable to replace it immediately with an accurate report. For some people, it is a long road to identify a newfound biological parent, make contact with them, request family medical information, and receive answers. For some, that information might never come. 



A healthcare provider should consider the different aspects and impacts of a family discovery, let your patient know they are not alone in their experience, and begin looking into the options. Referring them to the <a href="https://you.23andme.com/public/unexpected-relationships">Navigating Unexpected Relationships</a> page on the 23andMe customer website, if they have not already found their way to it, can be a great start.



<figure class="wp-block-image aligncenter"><img loading="lazy" decoding="async" width="512" height="289" src="http://35.88.189.111/wp-content/uploads/2021/01/DNAR.png" alt="An example of how to opt into DNA Relatives that includes a warning." class="wp-image-28736" srcset="https://blogcms.23andme.com/wp-content/uploads/2021/01/DNAR.png 512w, https://blogcms.23andme.com/wp-content/uploads/2021/01/DNAR-300x169.png 300w" sizes="auto, (max-width: 512px) 100vw, 512px" /><figcaption class="wp-element-caption">23andMe asks customers whether they wish to connect to DNA relatives and reminds them that they may find unexpected results.</figcaption></figure>



<h6 class="wp-block-heading" id="h-diana-s-story-a-case-study-of-an-unexpected-dna-discovery">Diana’s story, a case study of an unexpected DNA Discovery:</h6>



As a proactive person about her health, Diana spoke with her physician about direct-to-consumer DNA testing. He said using 23andMe was a nice way for her to explore genetics.  Both were shocked when a match in her DNA Relatives results listed matches that revealed she had a different biological father. 



This discovery is known as an NPE (a “not parent expected” discovery) in genealogy. While this kind of thing is well known enough to warrant an acronym, neither Diana nor her doctor were sure what to do once the discovery was made. 



<h2 class="wp-block-heading" id="h-into-whose-domain-does-this-concern-fall">Into whose domain does this concern fall?</h2>



This discovery had a huge impact on Diana. She described how it changed not just her sense of identity but also certain relationships in her life. But are those impacts relevant to her doctor? 



The short answer is yes. The medical field has branched into specialties to address the specific needs of patients, whether their issues involve the workings of the heart or of the mind. If a patient is distressed by a family discovery, they may need support from someone in the mental health space.



If a patient comes to them after making a significant discovery from one of these tests, a doctor may have to be able to answer questions about the accuracy or meaning of a test finding.  A healthcare professional may need to refer their patient to someone in genetics and family relationships for follow-up testing. 



<h2 class="wp-block-heading" id="h-medical-questions">Medical Questions</h2>



If the questions raised by the test are medical in nature, think of three professionals: medical geneticists, genetic nurses, and certified genetic counselors. These specialists work in many different areas—cancer, prenatal and preconception, neurology, metabolism—and are your partners in helping patients navigate the unexpected findings from DNA tests.&nbsp;



For Diana, her surprising discovery even led her to change plans. She had to visit the place she had believed to be her ancestral homeland. She discovered online resources like the Watershed DNA online forum where members discuss online and over weekly video calls the aspects of surprise DNA discoveries that impact them. Here’s what Diana had to say about what she wishes her doctor had done during the testing process:



&#8220;I wish my doctor had executed the same proactive approach to my NPE discovery and mental health as he did for my physical health. It isn&#8217;t enough to warn your patient that they might discover some unsettling news but to be prepared on how to lead your patient if that trauma occurs. A simple handout with a list of resources would have been enough to get me started. Not only would it have pointed me in the direction of healing, but it would also have been tangible evidence that I wasn&#8217;t alone in this experience.&#8221;



<h2 class="wp-block-heading" id="h-preparation-for-the-unexpected-is-key">Preparation for the Unexpected is Key</h2>



Most people who undergo DNA testing and opt-in to view DNA relatives do not receive a surprise like Diana’s. Most customers <a href="https://www.23andme.com/stories/">learn more</a> about health information, make expected connections to family, or confirm what they know about their genetic ancestors. 



Most healthcare providers will find a different set of questions a patient hopes to answer when talking with them about their 23andMe results. Being prepared for any situation that arises from a DNA test is key to being ready when a patient reaches out to discuss 23andMe.



<figure class="wp-block-image alignright"><img loading="lazy" decoding="async" width="300" height="267" src="http://35.88.189.111/wp-content/uploads/2020/11/image001-300x267.jpg" alt="Brianne Kirkpatrick" class="wp-image-28650" srcset="https://blogcms.23andme.com/wp-content/uploads/2020/11/image001-300x267.jpg 300w, https://blogcms.23andme.com/wp-content/uploads/2020/11/image001-1024x911.jpg 1024w, https://blogcms.23andme.com/wp-content/uploads/2020/11/image001-768x683.jpg 768w, https://blogcms.23andme.com/wp-content/uploads/2020/11/image001-880x783.jpg 880w, https://blogcms.23andme.com/wp-content/uploads/2020/11/image001-1180x1050.jpg 1180w, https://blogcms.23andme.com/wp-content/uploads/2020/11/image001.jpg 1596w" sizes="auto, (max-width: 300px) 100vw, 300px" /><figcaption class="wp-element-caption">Brianne Kirkpatrick, MS, LCGC</figcaption></figure>



Brianne Kirkpatrick is a genetic counselor and DNA consultant. She previously wrote about <a href="https://blog.23andme.com/ancestry-reports/dna-testing-for-adoptees/">DNA testing and adult adoptees for the blog.</a> She founded Watershed DNA and the author of the book DNA Guide for Adoptees. An alumnus of Indiana University and Northwestern University, Brianne is a member of the National Society of Genetic Counselors, American Board of Genetic Counseling, American Counseling Association, and International Society of Genetic Genealogy. She lives in Crozet, Virginia, with her husband and their three children.



<hr class="wp-block-separator has-alpha-channel-opacity" />

A photo of a doctor showing a patient information on a digital tablet.

Brianne Kirkpatrick

Navigating Family DNA Surprises, A Guide for Healthcare Providers

23andMe Researchers analyzed weight measurements from 23andMe research participants in the weeks before, during, and after the Christmas holiday 2020. 
For many of us, holiday weight gain is just another end of year tradition. 
But this year&#8217;s seasonal celebrations, like many things in 2020, were different. 
23andMe scientists wanted to know whether the annual tradition of gaining a few pounds over the holiday was any different this year. 
To do this our scientists analyzed daily weight measurements from about 1,000 23andMe customers who consented to participate in research and connected their mobile health data (Apple® Health, Google FitTM) to the 23andMe mobile app. 
This is what we learned about weight trends between Dec 14 to Jan 3. 
&nbsp;

 <figure class="wp-block-image size-large is-style-default"><img loading="lazy" decoding="async" width="1024" height="449" src="https://blogcms.23andme.com/wp-content/uploads/2019/09/Diet-Exercise-istock-1024x449.jpg" alt="" class="wp-image-27549" srcset="https://blogcms.23andme.com/wp-content/uploads/2019/09/Diet-Exercise-istock-1024x449.jpg 1024w, https://blogcms.23andme.com/wp-content/uploads/2019/09/Diet-Exercise-istock-300x132.jpg 300w, https://blogcms.23andme.com/wp-content/uploads/2019/09/Diet-Exercise-istock-768x337.jpg 768w, https://blogcms.23andme.com/wp-content/uploads/2019/09/Diet-Exercise-istock-880x386.jpg 880w, https://blogcms.23andme.com/wp-content/uploads/2019/09/Diet-Exercise-istock-1180x518.jpg 1180w, https://blogcms.23andme.com/wp-content/uploads/2019/09/Diet-Exercise-istock.jpg 1545w" sizes="auto, (max-width: 1024px) 100vw, 1024px" /></figure>
 
<h6>We avoid the scale on Christmas</h6>
Weigh-ins on Christmas day are lower compared to other days of the year, by about 15 percent.
It is easy to imagine why we might not step on the scale on Christmas: maybe we&#8217;re away from the scale and out of our normal routines, or we might just be trying to avoid receiving negative information. There’s a name for that, a behavioral phenomenon known as the <a href="https://effectiviology.com/ostrich-effect/">Ostrich effect</a>.  
<h6>On average people gain weight, but it&#8217;s not very much</h6>
In the days leading up to Christmas, weight measurements indicated that participants&#8217; weight was relatively stable during that time. But on the days following Christmas, the data indicate that participants put on weight, about half a pound on average. That means that overall among the research participants in the study, there was more weight gained than lost in the few days after Christmas. 
<h6>The holiday aftermath </h6>
It may be no surprise that we tend to gain weight over the holidays, but according to the data, it doesn&#8217;t stop at Christmas. 
Approximately half of the participants in the study (51 percent) showed an increase in weight during the week following Christmas, which includes New Year&#8217;s Day. Fifty-eight percent of males and 43 percent of females in the study logged weight increases during this week compared to their pre-Christmas weight. 
Weight increases seen after Christmas were moderate, around one or two pounds. Only a fraction of participants (about 18 percent) logged weight increases of two pounds or more. 
<h6>Closing the book on 2020 </h6>
All in all, the results of our analysis suggest that despite the chaos of 2020, the consequences of seasonal holiday indulgences seemed to continue as expected, although we may have tried to avoid them by not stepping on the scale. 
<h6>Getting ready for 2021</h6>
The new year is still young and it likely has a few more curveballs in store for us. But in terms of your health, 23andMe customers can start tracking data like steps, exercise, heart rate, and calories using the Lifestyle Dashboard in the 23andMe Apple and Android apps. To visit, look for the ‘Lifestyle Dashboard’ link on your app home tab, or under the health section. (Not yet a customer? Find out more <a href="https://www.23andme.com/compare-dna-tests/?sub=fyf">here</a>,) 
Because even if we can&#8217;t predict what 2021 will bring for us, at least we can track it. 
<hr />
Apple®, iPhone®, Apple Watch® are registered trademarks of Apple, Inc.
©2020 Google LLC All rights reserved. Google FitTM is a trademark of Google LLC.

Holiday Season Weight Trends 2020

Editor&#8217;s note: Today is &#8220;Data Privacy Day&#8221; so we thought it was a good time for a chat with Jacquie Haggarty, who among other roles, is 23andMe&#8217;s Privacy Officer.
 Jacquie joined 23andMe in 2015 and serves as the company’s Vice President, Deputy General Counsel, and Privacy Officer.&nbsp;
Prior to her work at 23andMe, Jacquie served as Senior Commercial Counsel at Genomic Health, where she focused on global legal and health care compliance. She spent the first six years of her legal career at Latham &amp; Watkins LLP, working directly with a diverse portfolio of public and private companies on securities, employment, and general commercial litigation.&nbsp;
Jacquie earned her J.D. from Georgetown University Law Center, her Masters in Public Policy from Harvard Kennedy School, and her B.A. from U.C. Berkeley.
We sat down with Jacquie to hear her perspective on privacy and data protection within the consumer genetics industry.
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<h6>Q: How do you see your role as the Privacy Officer for 23andMe?&nbsp;</h6>
Privacy is complex in practice, but my focus is simple — to ensure the privacy of our customers’ data and support customers’ choice and access throughout their experience as they explore their DNA. That involves working across the company to educate on our privacy commitments to our customers, to support the design and build of systems, policies, and processes that maintain and strengthen data protection, and to foster the development of content that provides transparency. As Privacy Officer, it’s important to me that we are being clear with our customers about our data practices and then doing what we say.&nbsp;
So on top of making sure that we adhere to our own strict privacy policies, my job is also to ensure 23andMe adheres to what is an extremely complex set — and growing set — of local, federal, and international privacy laws, such as the European Union General Data Protection Regulation (GDPR), and the California Consumer Privacy Act of 2018 or “CCPA” which was recently amended and expanded by the California Privacy Rights Act of 2020 (CPRA) ).&nbsp;
Beyond that, as 23andMe’s Privacy Officer, my job is to educate and inform people about what we do to protect customers’ data. I remind people that customer choice and consent is core to our service and the customer experience — what you learn from your DNA with 23andMe and with whom it may be shared is up to you. And I let people know that 23andMe does not share our customer data with public databases. We don’t share it with employers, or insurance companies, and we have never provided customer information to law enforcement.&nbsp;
I also am continuing our work with the <a href="https://fpf.org/about/">Future of Privacy Forum</a> through which we collaborated with other genetic testing companies to develop the consumer genetic testing <a href="https://fpf.org/2018/07/31/privacy-best-practices-for-consumer-genetic-testing-services/">industry privacy best practices</a>. 23andMe is also a member of the <a href="https://geneticdataprotection.com/">Coalition for Genetic Data Protection</a> (CGDP) where we work to advance legislation and policies that support the privacy and security of individual genetic data so that all genetic testing companies will be held to the same high standards for protecting customers’ data.&nbsp;
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<h6>Q: What should customers know about how 23andMe approaches the privacy of customer data?</h6>
Customers should know that choice and transparency are the two cornerstones of our privacy approach to what we do.&nbsp;
Our customers have control — they are in the driver’s seat when it comes to their data. 23andMe is a mission-driven company founded to empower people by giving them access to their genetic information. Part of empowering our customers is giving them a choice, such as the choice about whether they want to view certain sensitive health reports and the choice about whether they want to share any of their information. We do not make assumptions about the way our customers want to share their information when we build features; customers choose with whom they share their information and whether they want to participate in various features, such as DNA Relatives which allows customers who opt-in to participate to find genetic relatives in our database who have also opted into <a href="https://www.23andme.com/dna-ancestry">DNA Relatives</a>.&nbsp;
Giving customers choice also means allowing them to change their minds. At 23andMe, customers can simply revoke their consent to participate in research or opt-out of participation in any feature at any time.
We listen to customers and work closely with our Customer Care team to make sure we address privacy topics and concerns most important to them. Meaningful choice requires transparency and we work hard to make information accessible, including presenting information in ways that are easy to understand.&nbsp;&nbsp;
We give our customers the choice to participate in our research, and we communicate with our customers about the published studies where their data was used, if they chose to participate. We want our research participants to know how they are helping fuel scientific discoveries in this new genomic age. I know as a customer myself who is participating in research, being able to see that I have contributed to published discoveries on topics as varied as knee pain, depression, and Parkinson’s disease is immensely gratifying.
<h6>Q: What are some of the most common misconceptions about 23andMe’s approach to privacy?</h6>
The three biggest misconceptions are around law enforcement, selling data, and how our research works.&nbsp;
First, 23andMe does not allow law enforcement to access its database, nor does it voluntarily cooperate with any law enforcement investigation. We require all law enforcement inquiries to follow a valid legal process, such as a court order or search warrant and are prepared to exhaust available legal remedies to protect customer privacy.&nbsp;
We are committed to transparency in our interaction with law enforcement, which led us in 2015 to be the first direct-to-consumer genetic testing company to publish a <a href="https://www.23andme.com/transparency-report/">Transparency Report</a>. This report details the number of requests we receive from law enforcement, and the number of times we have produced customer information to law enforcement without the customer’s prior, explicit consent &#8211; to date, we have never provided customer information to law enforcement.&nbsp;
Second, 23andMe does not sell customer’s personal information. We do not share customer data with any third party without the customer’s consent. And, we do not share customer information with insurance companies or employers.
Finally, our Research program is no exception — customers have to separately opt-in to participate in Research. Research is at the core of our mission as a company and it has been from the start. 23andMe’s pioneering research model engages people and invites them to participate online, from anywhere. Traditional research was often limited to physical, onsite recruitment with limited numbers of participants. About 80 percent of our customers choose to participate in our Research program, many tell us they want to accelerate new insights into disease.&nbsp;
Our Research program is overseen by an independent institutional review board or “IRB” — this is an ethics review board that ensures 23andMe is meeting ethical and legal obligations for research and consent. We are also transparent about our research collaborations, sharing our projects and their findings via email, blog posts, and press releases when published.&nbsp;
23andMe does sometimes collaborate on research with third parties. In doing so, we only analyze data from customers who have consented to participate in Research. The data we analyze is de-identified — that is, it does not include personally identifiable information such as name or email — and results that are shared are aggregated datasets so that individuals cannot reasonably be re-identified. Customers can also separately choose to participate in Research with individual-level data sharing. And of course, customers can decide to opt-out at any time from any research.&nbsp;
<h6>Q: Why do you like working at 23andMe?&nbsp;</h6>
I’m disruptive — I love challenging the status quo — and I love working for a company that is focused on disrupting healthcare by empowering customers with their own data. For over five years, I’ve been inspired by our customers’ life-changing stories, inspired by our research efforts based on a pioneering, crowdsourced model. I’m hopeful that our efforts will lead to novel therapeutics that address unmet medical needs. It’s incredibly meaningful to be able to work in an ecosystem built on empowering today’s customers, today’s research participants &#8211; each as individuals &#8211; to be able to be a part of a collective that can turn healthcare on its head and accelerate drug discovery to help tomorrow’s patients. It’s an opportunity that is as unique as your DNA.
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