Most 23andMe customers are interested in knowing what their genetics says about potential health risks.
They’re interested in exploring their own genetic information because knowing gives them the power to take action.
<div id="attachment_19583" style="width: 550px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" aria-describedby="caption-attachment-19583" class="wp-image-19583 size-large" src="http://35.88.189.111/wp-content/uploads/2013/10/Fast-Company-Graphic-540x1024.jpg" alt="Here's a graphic from the Fast Company article showing a snapshot of some of our customer data." width="540" height="1024" srcset="https://blogcms.23andme.com/wp-content/uploads/2013/10/Fast-Company-Graphic-540x1024.jpg 540w, https://blogcms.23andme.com/wp-content/uploads/2013/10/Fast-Company-Graphic-158x300.jpg 158w, https://blogcms.23andme.com/wp-content/uploads/2013/10/Fast-Company-Graphic-768x1457.jpg 768w, https://blogcms.23andme.com/wp-content/uploads/2013/10/Fast-Company-Graphic-464x880.jpg 464w, https://blogcms.23andme.com/wp-content/uploads/2013/10/Fast-Company-Graphic-622x1180.jpg 622w, https://blogcms.23andme.com/wp-content/uploads/2013/10/Fast-Company-Graphic-scaled.jpg 1349w" sizes="auto, (max-width: 540px) 100vw, 540px" />Here&#8217;s a graphic from the Fast Company article showing a snapshot of some of our customer data.</div>
Knowing allows them to take preventative measures or prepare and mitigate for the things that can’t be changed. They also understand that an identified genetic risk for a condition isn’t the whole picture. Your genetics is important, but your health is influenced by many factors – your diet, whether you exercise, the amount of stress in your life along with what’s in your DNA. Knowing about a risk gives you the power to make changes to either prevent what you can or mitigate what you can’t.
But not everyone sees things in that way. Some people don’t want to know.
Among the many interesting angles in the recent<a href="https://www.fastcompany.com/3018598/for-99-this-ceo-can-tell-you-what-might-kill-you-inside-23andme-founder-anne-wojcickis-dna-r"> Fast Company article</a> about 23andMe and our CEO Anne Wojcicki, the story identified the challenge of marketing direct-to- consumer genetic testing to the<a href="https://www.fastcompany.com/3019942/the-marketing-challenge-of-99-dna-testing-company-23andme"> right audience</a>.
Ultimately we think that all individuals will find value in genetic testing, but for now many of our customers choose 23andMe because they want to know.
“Our marketing team’s job is to find people who aren’t afraid to manage their health, who aren’t afraid to know,” said Andy Page, 23andMe President.
It is interesting to look a little deeper at this notion of why some people want to know and some others don’t. If you talk to someone who has tested, they’re often baffled as to why someone wouldn’t want to know. Conversely, if you talk to someone who doesn’t want to get tested, he or she seem incredulous that anyone would want to find out they had a genetic risk for any disease. It’s actually a central paradox in the Fast Company article as the writer considers her next steps after learning that her young adopted daughter has a genetic risk for getting Alzheimer’s late in life.
What’s with the stark contrast between these two camps of people? A lot, apparently.
Recently,<a href="http://pss.sagepub.com/content/early/2013/07/10/0956797613478616.abstract"> a study</a> by researchers at the<a href="http://www.psych.ufl.edu/"> University of Florida</a> looked specifically at why some people avoided learning about their health risks, even when knowing those risks might help prevent them from ever developing the disease.
<iframe loading="lazy" src="https://www.youtube.com/embed/ZdDN8pm6gbY?rel=0" width="300" height="169" frameborder="0"></iframe>
The researchers learned that a person’s receptiveness to this kind of information has everything to do with how the information is presented and who is presenting it. In one group of individuals, the researchers found that people were more likely to opt-in to finding out about their risk for type 2 diabetes and cardiovascular disease if they were asked to talk about why they might not want to see the information. It also helped if they were given information about how they could reduce their risk, and whether or not 
the condition was treatable.
And although some individuals said they would avoid finding out about a risk because they might be distressed by it, <a href="https://blog.23andme.com/23andme-research/useful-genetics/">several studies</a> indicate that people don’t experience inordinate stress. Learning of these risks can also trigger positive actions, like talking to a doctor and preventative treatment.
23andMe gives people the choice to take this information and inform how they manage their own health. We&#8217;ve included a short video from a PBS station in San Francisco asking people whether they&#8217;d want to know. Check it out.
<div></div>
A couple of producers for &#8220;On The Media&#8221; a show that airs regularly on NPR stations discuss the reasons they&#8217;ve decided to do 23andMe and then spit together. Have <a href="http://www.wnyc.org/radio/#/ondemand/325920" target="_blank" rel="noopener noreferrer">a listen</a>.
<div></div>

23andMe Blog

23andMe Blog Team

To Know Or Not To Know

The<img loading="lazy" decoding="async" class="alignright size-medium wp-image-19548" src="https://blog-api.23andme.com/wp-content/uploads/2013/10/erase-fear-300x199.jpg" alt="erase fear" width="300" height="199" srcset="https://blogcms.23andme.com/wp-content/uploads/2013/10/erase-fear-300x199.jpg 300w, https://blogcms.23andme.com/wp-content/uploads/2013/10/erase-fear.jpg 425w" sizes="auto, (max-width: 300px) 100vw, 300px" />
In addition, the study,<a href="http://www.stsiweb.org/index.php/about/bio/bloss"> by Cinnamon Bloss, Ph.D.,</a> found that the test didn’t result in increased anxiety in participants.
Scripps has been studying consumer reactions to genetic testing for a couple of years now, and the results from this study follow up on more preliminary<a href="http://www.nejm.org/doi/full/10.1056/NEJMoa1011893"> studies</a> that showed similar results.
Last year, Bloss presented some of her data at the conference of the<a href="https://blog.23andme.com/23andme-research/data-on-personal-genetics-at-ashg/"> American Society of Human Genetics in San Francisco</a>.
Since direct-to-consumer genetic testing became available, there has been criticism that the tests would trigger undue anxiety among participants. Studies have not found this to be the case, however.
<a href="https://blog.23andme.com/23andme-research/few-worry-about-genetic-testing/">We&#8217;ve written</a> before about some of the work Bloss and her team have already done. These and other studies provide real data showing the value for consumers of this kind of information when applied to their own health. In fact, nearly all participants found the information to be useful. And those who learned they had an increased genetic risk for certain conditions often worked with their doctors to take preventative actions to mitigate those risks.

Useful Genetics

<img loading="lazy" decoding="async" class="alignright wp-image-18272 size-medium" title="DNA Poster" src="http://35.88.189.111/wp-content/uploads/2013/05/DNA-Poster-232x300.jpg" alt="" width="232" height="300" srcset="https://blogcms.23andme.com/wp-content/uploads/2013/05/DNA-Poster-232x300.jpg 232w, https://blogcms.23andme.com/wp-content/uploads/2013/05/DNA-Poster-768x994.jpg 768w, https://blogcms.23andme.com/wp-content/uploads/2013/05/DNA-Poster-791x1024.jpg 791w, https://blogcms.23andme.com/wp-content/uploads/2013/05/DNA-Poster-680x880.jpg 680w, https://blogcms.23andme.com/wp-content/uploads/2013/05/DNA-Poster-911x1180.jpg 911w, https://blogcms.23andme.com/wp-content/uploads/2013/05/DNA-Poster.jpg 1275w" sizes="auto, (max-width: 232px) 100vw, 232px" />With participation by 23andMe and the three other major companies involved in DNA testing for ancestry, as well as talks from some of the most respected names in the field, it’s no wonder organizers are predicting the June 6th “Family History and DNA” conference in Burbank will sell out.
The event, planned in conjunction with the annual Southern California Genealogy Jamboree, will feature Professor Henry Louis Gates Jr., Spencer Wells, and 23andMe’s own Joanna Mountain to name just a few.
Gates, the author of “Faces of America,” will give the luncheon address. The Alphonse Fletcher University Professor at Harvard University, Gates is also the director of the W. E. B. Du Bois Institute for African and African-American Research. He is known for both his literary and cultural criticism, but more recently has gained popular notice through his shows on PBS that focus on ancestry and genetics.
<a id="docs-internal-guid-6bc9beae-b41b-3dcd-f9c4-6e544487efad" href="http://www.scgsgenealogy.com/Jamboree/2013/Schedule.htm">The line-up</a> for the day will also have representatives from all four of the major consumer genetics companies involved in genetic genealogy –   <a href="https://www.23andme.com/ancestry/">23andMe</a>, Ancestry.com, FamilyTree DNA, and the<a href="https://genographic.nationalgeographic.com/"> Genographic Project</a>.
“This is the first genetic genealogy conference ever to bring together speakers from all of the major DNA testing companies that offer services to the genealogy community,” said<a href="http://www.yourgeneticgenealogist.com/"> CeCe Moore</a>, the conference coordinator and co-chair.
CeCe has close working relationships with all the four major testing companies including 23andMe. She is also the Southern California Regional Coordinator for the International Society for Genetic Genealogy (ISOGG). The ISOGG and the Southern California Genealogical Society teamed up to make this inaugural event a reality.
The conference is scheduled for the day before the three-day Genealogy Jamboree, which goes from Friday the 7th through Sunday the 9th.
The Family History and DNA conference is already 85 percent sold out, said CeCe. Beyond the great lineup of speakers, the conference comes just as the use of DNA to learn more about ancestry is becoming more and more a part of the zeitgeist, she said.
“My experience leads me to believe that we are on the brink of widespread interest in and acceptance of personal genomics,” said CeCe.
Some of that interest is because of the work of Prof. Gates and his popular television show<a href="https://www.pbs.org/wnet/finding-your-roots/"> Finding Your Roots</a>, Dr. Wells’ Genographic Project, and the many stories coming out of 23andMe about people <a href="https://www.23andme.com/stories/2/">who made surprising discoveries</a> about their family history using genetic testing.
All of that has helped open “the public&#8217;s eyes to what can be discovered from DNA testing,” CeCe said. “With the information age upon us, it is simply astounding what we can learn about ourselves and our family history.&#8221;
If you’re interested in going sign up now, tickets are going fast.

A Day For Family History And DNA

<img loading="lazy" decoding="async" class="aligncenter size-medium wp-image-17116" title="Virginia Hughes" alt="" src="https://blog-api.23andme.com/wp-content/uploads/2013/01/Virginia-Hughes-300x173.jpg" width="300" height="173" />
Thank you, Virginia.
In<a href="https://www.slate.com/articles/health_and_science/medical_examiner/2013/01/ethics_of_genetic_information_whole_genome_sequencing_is_here_and_we_need.single.html"> a recent article</a> in Slate, <a href="http://virginiahughes.com/" target="_blank" rel="noopener noreferrer">Virginia Hughes</a>, who also blogs for National Geographic, nails it, hammering home the point that people are much smarter and tougher than they’re depicted in many news articles about genetic testing.
We’ve written before about what feels like fear mongering in some stories about DNA testing. Hughes writes that a lot of the media coverage is stuck on the same refrain that people won’t be able to handle the information they get from genetic testing.
“&#8230;this is the wrong question, or at least one that’s becoming increasingly irrelevant,” Hughes writes. “The personal genomics horse has bolted, and yet many paternalistic members of the medical community are still trying to shut the barn door. In doing so, they’re fostering a culture of DNA fear when what we really need is a realistic and nuanced genetics education.”

That last point, the need for more genetic literacy is key. Instead of covering the gap in genetic knowledge, some writers play up this diffuse fear that a test is going to tell you your destiny or that the information is just too difficult to handle.
Hughes argues that the commonly-expressed opinion, “…that a nonexpert couldn’t possibly understand the concept of uncertain risk and would therefore be harmed by the knowledge” is “patronizing” and “probably false.”
She goes on to say that it’s better to deal with the reality that people want access to their genetic information, and that more and more people are getting tested every day. It’s time to bring a more nuanced approach to how we talk about it.
A Hughes writes, “There’s no way around the fact that genomes are complicated and, at least for now, difficult to interpret. And sometimes, yes, they will lead to unpleasant information. But [genetic information] isn’t going to suddenly fade away. More and more people are getting their DNA sequenced and eager to find out what secrets, if any, it holds. So let’s figure out how to tell them.”
&nbsp;

We Can Handle the Truth About Genetics

<img loading="lazy" decoding="async" class="alignright wp-image-3440 size-medium" title="Abstract DNA" src="http://35.88.189.111/wp-content/uploads/2009/04/istock_000002166527xsmall-300x219.jpg" alt="" width="300" height="219" srcset="https://blogcms.23andme.com/wp-content/uploads/2009/04/istock_000002166527xsmall-300x219.jpg 300w, https://blogcms.23andme.com/wp-content/uploads/2009/04/istock_000002166527xsmall.jpg 406w" sizes="auto, (max-width: 300px) 100vw, 300px" />
Earlier this month Public Health Genomics published<a href="http://content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowAbstract&amp;ArtikelNr=343792&amp;Ausgabe=0&amp;ProduktNr=224224"> a paper by a team of Swiss researchers</a> that reinforces the growing body of work showing both a strong consumer interest in DNA testing, and positive experiences with personal genetic testing.
In this study, the participants were life science students at the University of Zurich who purchased the kits from 23andMe at an educational discount. While these participants had more genetic expertise than the average consumer, their responses were not very different from people in other recent studies. 
Many of the respondents described their experience as “fun” and said part of their motivation for getting genotyped was to advance genetic research.
“Their experiences provide valuable insights into the role of personal curiosity and altruism (fostering medical research) as motivations for testing and the utility attributed to both,” the study concludes.
<h6>DNA Testing Does Not Induce Anxiety</h6>
Ninety percent of them described their experience as positive, and a majority indicated the test would impact how they thought about their health.
the study also appears to add more evidence that direct to consumer testing doesn’t induce fear. Although a little more than half the respondents had some concerns about confidentiality and privacy, only one described those as  “serious concerns.”
We’ve written several times about other studies that show people don’t freak out about what they learn from their genetic information. People also say they find value in getting genotyped.
<h6>Motivations for DNA Testing</h6>
This study – the first to look at direct to consumer genetic testing in Europe – shows much the same as previous studies done in the United States. But unlike most of the other studies, it also delves into both why people get genotyped and how they look at that information.
<img loading="lazy" decoding="async" class="aligncenter wp-image-16940 size-medium" title="Motivations for DNA testing for consumers" src="https://blog-api.23andme.com/wp-content/uploads/2012/11/updated-swiss-study-graph-300x181.jpg" alt="" width="300" height="181" srcset="https://blogcms.23andme.com/wp-content/uploads/2012/11/updated-swiss-study-graph-300x181.jpg 300w, https://blogcms.23andme.com/wp-content/uploads/2012/11/updated-swiss-study-graph.jpg 362w" sizes="auto, (max-width: 300px) 100vw, 300px" />
In another recent study presented at the annual meeting of the American Society of Human Genetics in San Francisco, Sandra Lee, Ph.D., a Senior Research Scholar at the Stanford Center for Biomedical Ethics, presented findings from a study on 23andMe customers. Most of those in her study freely shared their genetic data with family and friends. Many of them also posted their results on Facebook. This was also the case in the Swiss study, in which about 64 percent of those asked said they’d share their results with family.
Another finding from the Swiss study was that consumers were motivated not just by curiosity but a desire to participate in research in some way.
“23andMe gave them an opportunity they otherwise would not have had to help advance research,” the paper said. “Individual contributions to research were discussed in terms of ‘investments’ in the future. (The) returns being the acceleration of medical discovery and better medicine.”

Consumer Interest in Genetic Testing

<img loading="lazy" decoding="async" class="aligncenter size-full wp-image-14718" title="ashglogo" src="https://blog-api.23andme.com/wp-content/uploads/2012/07/ashglogo.jpg" alt="" width="150" height="80" />
There are many pie charts, numerical tables, and graphs on display this week at the American Society of Human Genetics in San Francisco, but one caught our eye Wednesday morning.
It was a graph by Dr. Cinnamon Bloss of the<a href="http://www.stsiweb.org/index.php/translational_research/research_highlights/consumer_genomics/"> Scripps Translational Science Institute</a>. Scripps has been studying consumer reactions to genetic testing for several years.
The graph tracks the coverage of direct-to-consumer genetic testing in academic journals over the last ten years. What’s interesting is how widely divergent the lines are between the number of opinion pieces and actual studies. While the number of studies into direct-to-consumer genetic testing ticked up modestly, the number of opinion pieces increased exponentially.
Bloss and her team broke down the arguments made in those pieces – both pro and con – and concluded that these are all opinions they could study and gather evidence on. Do these tests induce anxiety, for instance? Or do people understand the information they get from these tests? Do they take action on what they learn or talk to their doctors?
<img loading="lazy" decoding="async" class="alignright wp-image-16786 size-medium" title="Scripps graph" src="http://35.88.189.111/wp-content/uploads/2012/11/Scripps-graph-300x221.jpg" alt="" width="300" height="221" srcset="https://blogcms.23andme.com/wp-content/uploads/2012/11/Scripps-graph-300x221.jpg 300w, https://blogcms.23andme.com/wp-content/uploads/2012/11/Scripps-graph-768x566.jpg 768w, https://blogcms.23andme.com/wp-content/uploads/2012/11/Scripps-graph-880x648.jpg 880w, https://blogcms.23andme.com/wp-content/uploads/2012/11/Scripps-graph.jpg 892w" sizes="auto, (max-width: 300px) 100vw, 300px" />Scripps Translational Science Institute Graph
<a href="https://blog.23andme.com/23andme-research/few-worry-about-genetic-testing/">We’ve written</a> a little about some of the work Bloss and her team have already done. She covered some of<a href="http://www.nejm.org/doi/full/10.1056/NEJMoa1011893"> that territory again</a>, showing that, for instance,<a href="https://www.nature.com/news/2011/110112/full/news.2011.12.html"> several studies</a> indicate that direct-to-consumer genetics testing does not induce high levels of anxiety among people who have these tests done.
What was nice about the graph – and the discussion during which it was presented – is that instead of batting about opinions, the speakers talked about what they’ve learned from some of the most recent studies into consumer genetics. (The panel included 23andMe’s Senior Director of Research Joanna Mountain.)   (Editor&#8217;s note: Ricki Lewis had an excellent post about this panel on the PLOS blog DNA Science.)
It was interesting to learn that people are not only not worried about exploring their genetics, but they genuinely desire access to that information. A study by Dr. David Kaufman of Johns Hopkins University, who was also on the panel, showed that people reacted to getting this information by talking to their doctors or simply seeking more information about conditions.
Dr. Sandra Soo-Jin Lee of Stanford presented data from her study on social networking and genetic testing. In it, she found that a high percentage of people openly share their genetic information not just with their doctors but also with family and friends.
23andMe has helped some of these researchers connect with our customers. Joanna explained 23andMe’s rationale for working with academics during the panel discussion. There are many reasons, but one of the main motivations is to learn more about what kinds of information customers respond to and what they find most useful. This helps us improve what we do.

Data on Personal Genetics at ASHG

A common refrain for critics of direct to consumer genetic testing is that the tests could cause unnecessary worry.
<a href="http://www.medpagetoday.com/Genetics/GeneticTesting/25280">Those critics believe</a> that for some tests the results shouldn’t go directly to a consumer and instead be delivered by a doctor or genetic counselor. We believe that a person shouldn’t have to go through someone else to access their own genetic information, if they want it.
At a conference earlier this month in Boston, social scientist Cinnamon Bloss, Ph.D. talked specifically about whether these tests induce fear.
Several studies <a href="https://www.nature.com/news/2011/110112/full/news.2011.12.html">indicate they don’t.</a>
“A major concern raised regarding these tests is the possibility they will lead to high levels of anxiety in consumers who receive estimates of high genetic risk,” said <a href="http://www.stsiweb.org/index.php/translational_research/research_faculty/bloss">Bloss</a>, last year after one of those <a href="http://www.stsiweb.org/index.php/translational_research/research_highlights/consumer_genomics/">studies was published</a>. “But our data suggest this is not the case.”
Bloss, from the<a href="http://www.stsiweb.org/index.php"> Scripps Translational Science Institute</a>, spoke at the Fourth Annual <a href="http://www.consumergeneticsconference.com/">Consumer Genetics Conference</a> about studies the institute did that showed that few consumers reported heightened anxiety from the tests. While not many people in the Scripps&#8217; study said the tests resulted in a change in their diet or exercise, about a third of those tested shared their information with a doctor within a year and a majority said they found the information useful.
<img loading="lazy" decoding="async" class="alignright wp-image-16320 size-medium" title="Personal utility" src="http://35.88.189.111/wp-content/uploads/2012/10/Personal-utility-300x219.jpg" alt="" width="300" height="219" srcset="https://blogcms.23andme.com/wp-content/uploads/2012/10/Personal-utility-300x219.jpg 300w, https://blogcms.23andme.com/wp-content/uploads/2012/10/Personal-utility-768x560.jpg 768w, https://blogcms.23andme.com/wp-content/uploads/2012/10/Personal-utility-1024x747.jpg 1024w, https://blogcms.23andme.com/wp-content/uploads/2012/10/Personal-utility-880x642.jpg 880w, https://blogcms.23andme.com/wp-content/uploads/2012/10/Personal-utility-1180x860.jpg 1180w, https://blogcms.23andme.com/wp-content/uploads/2012/10/Personal-utility.jpg 1465w" sizes="auto, (max-width: 300px) 100vw, 300px" />
Earlier this month we gave a much-warranted<a href="../news/fear-not-the-genome/"> nod to Holly Dunsworth</a>, who wrote about the tendency in some coverage of genetics to play on people’s fear instead of illuminate issues.
There have been several studies into this very issue, and, so far, all have agreed that people can handle the truth about their genetics. They also want to know. Fear, or more accurately the potential anxiety surrounding the results of a genetics test, is an issue that can actually be studied. The studies done so far agree that genetic testing doesn’t induce high levels of fear and anxiety in those who choose to get tested.

Few Worries About Genetic Testing

<img loading="lazy" decoding="async" class="alignright wp-image-6586 size-medium" title="23andMe_Logo_blog" src="http://35.88.189.111/wp-content/uploads/2010/05/23andMe_Logo_blog-300x300.jpg" alt="An image of 23andMe's logo" width="300" height="300" srcset="https://blogcms.23andme.com/wp-content/uploads/2010/05/23andMe_Logo_blog-300x300.jpg 300w, https://blogcms.23andme.com/wp-content/uploads/2010/05/23andMe_Logo_blog-150x150.jpg 150w, https://blogcms.23andme.com/wp-content/uploads/2010/05/23andMe_Logo_blog-271x271.jpg 271w, https://blogcms.23andme.com/wp-content/uploads/2010/05/23andMe_Logo_blog.jpg 350w" sizes="auto, (max-width: 300px) 100vw, 300px" />
We would like to give a little shout-out to Holly Dunsworth, an assistant professor of anthropology at the University of Rhode Island and a blogger, for her thoughtful post<a href="http://ecodevoevo.blogspot.com/2012/10/be-afraid-of-fear-not-personal-genomics.html"> “Be Afraid of Fear, Not Personal Genomics.”</a>
<h6>Fear</h6>
While there are legitimate topics for debate about genetic testing, some coverage veers far from those real issues, and seemingly serves only to scare people.
Dunsworth cites a few paragraphs from a recent<a href="http://m.npr.org/news/Health/160958948"> NPR piece</a> that includes a quote from Mark Rothstein, a bioethicist at the University of Louisville.
“We&#8217;re basically not ready for a society in which very exquisite, detailed genomic information about every individual, potentially, is out there,” Rothstein said.
Why that might be is not explained by Rothstein, and this is Dunsworth’s point. It just hangs out there playing on people’s fear.
<h6>Access</h6>
It’s a disservice to play up those fears. In this case, the statement by Rothstein supposes that because a person knows his or her own genomic information, somehow anyone else can learn about it. But that’s not true. There are strong privacy protections for that data. At the same time, if a person is comfortable sharing their information with others, they have the right to do that. This goes back to some of the bedrock  principles of ethics that include the autonomy and respect for individuals. Those  principles should make clear that a person both has a right to access to their own DNA data, and the right to use it as they see fit.

<img loading="lazy" decoding="async" class="alignright wp-image-16032 size-medium" title="mermaid's tale blog" src="http://35.88.189.111/wp-content/uploads/2012/10/mermaids-tale-blog-300x45.jpg" alt="An image of the Mermaid's Tale website logo" width="300" height="45" srcset="https://blogcms.23andme.com/wp-content/uploads/2012/10/mermaids-tale-blog-300x45.jpg 300w, https://blogcms.23andme.com/wp-content/uploads/2012/10/mermaids-tale-blog.jpg 654w" sizes="auto, (max-width: 300px) 100vw, 300px" />
<h6>Understanding</h6>
In a comment to her own post, Dunsworth points out that in the NPR piece in early September there is more space dedicated to the 1997 fictional dystopian movie Gattaca than to real topics for discussion. For Dunsworth, this feeds into people’s own fears and ignorance about the science rather than informing them.
“Even if you don&#8217;t get an ounce of joy from the experience, when you&#8217;re informed you don&#8217;t fall uncritically for claims that (genetic testing is) … dangerous or venomous,” she writes.
One of the missions of 23andMe is to <a href="https://www.23andme.com/gen101/genes/" target="_blank" rel="noopener noreferrer">introduce people to their DNA</a> and help them navigate what all the As, Gs, Ts and Cs mean. Our hope is that the more you know about yourself the more you will take charge of your own health. It is also fascinating and fun to explore your genetics and learn about how it may impact your health, or how it makes you unique, or what it says about your ancestry. In the process, we learn that science is dynamic and our knowledge constantly evolving as we find out more about ourselves and what our DNA means.
The journey you take can be both awe-inspiring and fascinating. And as Dunsworth says:
“There&#8217;s not a whole lot on the planet that&#8217;s cooler than that.”

Fear Not The Genome

<img loading="lazy" decoding="async" class="aligncenter size-full wp-image-14771" title="300x250_invite3" src="https://blog-api.23andme.com/wp-content/uploads/2012/08/300x250_invite3.png" alt="" width="300" height="250">
Many expensive clinical trials fail because the therapy causes harmful side effects in some or all participants or the drug isn’t effective across the board. Genetics may explain differences in response, but as of today DNA testing isn’t a standard part of clinical trials.
Integrating genetic testing into clinical trials should make it easier to determine why certain people benefit from a drug while others don’t. As the price of genetic testing drops, adding a simple test into an otherwise expensive and long process may also make the trial more efficient. Throw the Internet and other new technologies into the mix and speed and efficiency is further maximized.
The scenario goes something like this. A potential participant finds out about a trial through his or her doctor or online – anyone interested could receive alerts when a suitable trial opens. It’s been said that the <a href="https://en.wikipedia.org/wiki/Clinical_trial#Length">biggest barrier</a> to study completion is the shortage of people who take part and technology should be able to change this. Eligibility is confirmed by going to the trial website and answering a few simple questions.
<div style="float: right; text-align: justified; width: 200px; padding: 15px; border: 1px solid #ccc; margin-left: 10px;">
About Clinical Trials
The goal of a clinical trial is to determine if a drug or other health intervention is efficacious and/or causes harmful side effects. Trials help ensure that only safe therapeutics are brought to market. Unfortunately this doesn’t always turn out to be the case since a number of drugs still end up being taken off the market after gaining FDA approval. For pharmaceutical companies, clinical trials are both expensive and time consuming. They cost anywhere between <a href="http://www.dddmag.com/articles/2007/09/cost-clinical-trials">100 </a><a href="http://www.dddmag.com/articles/2007/09/cost-clinical-trials">and</a><a href="http://www.dddmag.com/articles/2007/09/cost-clinical-trials"> 800 </a><a href="http://www.dddmag.com/articles/2007/09/cost-clinical-trials">million</a> and take roughly <a href="http://www.thebody.com/content/art398.html">five </a><a href="http://www.thebody.com/content/art398.html">to</a><a href="http://www.thebody.com/content/art398.html"> nine</a><a href="http://www.thebody.com/content/art398.html"> years</a> to complete once a drug enters Phase I testing in human subjects. The big kicker is that only <a href="http://www.thebody.com/content/art398.html">one </a><a href="http://www.thebody.com/content/art398.html">in </a><a href="http://www.thebody.com/content/art398.html">five </a><a href="http://www.thebody.com/content/art398.html">drugs</a> end up with the stamp of approval – the rest fail at a high price tag.
</div>
The drug is administered to the patient through a physician, but instead of it being up to the physician to ensure compliance and gather outcomes, technology follows up. Participants receive text messages or email reminders to take the medication and are also asked how they’re feeling to see if the drug is affecting their quality of life. In addition to gathering data about survival, anti-cancer response and adverse events, it’s becoming increasingly important to find out if a therapy impacts quality of life.
Genetic data is collected easily with a saliva-based test – it’s mailed directly to the participant’s home, he or she spits, and then the test is popped back in the mail. When it comes time to analyze the results of the trial, the genetic information is layered upon other data points that are already routinely collected such as age, other diseases the person has, and life expectancy. Scientists look for possible associations between side effects and genetic factors while controlling for a myriad of other factors.
23andMe is already incorporating these ideas – utilizing technology and carrying out DNA testing – into drug studies. Our <a href="https://www.23andme.com/invite-study/">InVite study </a>with <a href="http://www.gene.com/gene/index.jsp">Genentech</a> is aimed at understanding how genes influence response to treatment for metastatic breast cancer. Participants find out about InVite through advocacy groups, social media sites, or their physician and <a href="https://www.23andme.com/invite-study/">enroll in the study online</a>. They receive a saliva-based test in the mail and fill out online surveys about their experience taking bevacizumab, also known as <a href="http://www.gene.com/gene/products/information/oncology/avastin/">Avastin ®</a>. This drug is currently not approved by the FDA for treatment of metastatic breast cancer. 23andMe is actively recruiting participants and hopes to determine if a person’s genes could play a role in response to bevacizumab. Participants are not expected to directly benefit from this study.
(Women who began taking bevacizumab on or before December 31, 2011 are eligible for this study – see below for details.)
The example in this post represents a glimpse into the future of clinical trials, but also highlights the challenges ahead – therapies need to be targeted to the right people, technologies need to be tailored for data collection and genetic testing needs to be incorporated up front. With these changes trials should yield faster answers and won’t require as many participants. But the final goal is to arrive in a world of <a href="http://connection.asco.org/Commentary/Article/id/3130/Personalized-Oncology-Care-The-Patient-as-well-as-the-Tumor.aspx">tailored therapy</a> – where therapies are targeted based on the characteristics of both the disease and the individual patient to maximize the chances for success.
<div style="background-color: #f2f2f2; padding: 10px; margin-top: 5px; margin-bottom: 15px; border: 1px solid #ccc;">
Research on the Genetics of Response to Treatment for Breast Cancer 
23andMe and <a href="http://www.gene.com/gene/index.jsp">Genentech</a> launched the InVite Study to understand how genes influence response to treatment for metastatic breast cancer. Visit<a href="https://www.23andme.com/invite-study/"> https://www.23andme.com/invite-study/</a> or email invite-study@23andme.com for more information.
<img loading="lazy" decoding="async" class="aligncenter wp-image-12590" title="InVite Logo" src="https://blog-api.23andme.com/wp-content/uploads/2012/03/InVite-Logo.png" alt="" width="610" height="221" srcset="https://blogcms.23andme.com/wp-content/uploads/2012/03/InVite-Logo.png 826w, https://blogcms.23andme.com/wp-content/uploads/2012/03/InVite-Logo-300x108.png 300w, https://blogcms.23andme.com/wp-content/uploads/2012/03/InVite-Logo-768x277.png 768w" sizes="auto, (max-width: 610px) 100vw, 610px" />
Potential findings of this study may help to determine if a person’s genes could play a role in how they respond to Avastin .
</div>

DTC Genetic Testing — Page 2