<img loading="lazy" decoding="async" class="alignright size-full wp-image-16749" title="JoyceTung" src="https://blog-api.23andme.com/wp-content/uploads/2012/11/JoyceTung.jpg" alt="" width="130" height="170">
(Editor&#8217;s note: Here is a <a href="https://blog-api.23andme.com/wp-content/uploads/2012/11/ASHG2012poster-JYT-final.pdf" target="_blank" rel="noopener noreferrer">link</a> to Joyce&#8217;s poster presented at ASHG.)
Genetic research often requires people willing to share their time and answer questions for the sake of scientific inquiry. &nbsp;Any study involving research participants should ensure that such volunteers are treated fairly and ethically. As both a research company and an advocate for personal genomics, 23andMe believes people have a right to know their genetic data and what happens to data they’ve contributed to research.
Joyce Tung, Senior Scientist at 23andMe, will be presenting a poster on this topic at the annual meeting of the American Society of Human Genetics next week. The main focus is on “return of results.” &nbsp;For instance, if a research study is looking at a particular genetic variant associated with higher risk for a disease, some of the research participants may want to know whether they carry that particular variant.
 
Only recently have studies begun to consider sharing information with participants. Doing so in a cost-effective and responsible way can be complicated; such communication not only needs to be understandable to a general audience, but also done in a way that protects people’s privacy. There might also need to be a way to update participants over time if the findings or interpretations change. 23andMe is familiar with all of these challenges.
Joyce’s poster will show how 23andMe stacks up to published recommendations related to sharing individual research results in a responsible way. Doing research on how to do research &nbsp; â€• it may sound a bit metaphysical but the research is much needed.

23andMe Blog

23andMe Blog Team

Improving the Experience of Participating in Research

<img loading="lazy" decoding="async" class="aligncenter wp-image-16759 size-full" title="23andMe Portraits" src="http://35.88.189.111/wp-content/uploads/2012/11/23andMe-Groupbw-scaled.jpg" alt="" width="2560" height="1707" srcset="https://blogcms.23andme.com/wp-content/uploads/2012/11/23andMe-Groupbw-scaled.jpg 2560w, https://blogcms.23andme.com/wp-content/uploads/2012/11/23andMe-Groupbw-300x200.jpg 300w, https://blogcms.23andme.com/wp-content/uploads/2012/11/23andMe-Groupbw-768x512.jpg 768w, https://blogcms.23andme.com/wp-content/uploads/2012/11/23andMe-Groupbw-1024x683.jpg 1024w, https://blogcms.23andme.com/wp-content/uploads/2012/11/23andMe-Groupbw-880x587.jpg 880w, https://blogcms.23andme.com/wp-content/uploads/2012/11/23andMe-Groupbw-1180x787.jpg 1180w" sizes="auto, (max-width: 2560px) 100vw, 2560px" /> 
(Editor&#8217;s note: Here&#8217;s a <a href="https://blog.23andme.com/23andme-research/23andmes-presentations-at-ashg/" target="_blank" rel="noopener">link</a> to a post with the links to all the poster presentations given by 23andMe scientists at 23andMe.)
Here we come.
Starting today a contingent of 23andMe’s scientists and researchers will be at the American Society of Human Genetics Annual Meeting in San Francisco.
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BAR NIGHT AT THE B
On top of hosting a booth in the sea of booths at the ASHG conference, 23andMe will be hosting a bar night as well.
On Thursday evening come by for some food, drinks and talk at our <a href="https://www.23andme.com/ashg2012/">“Bar Night at the B.”</a>
Bartenders will begin pouring drinks at 7 and we’ll be winding things up by 10.
We’re also be offering up a unique chance to enter and win the opportunity for one lucky scientists to pose a research question of our database. US residents only. See Official Rules here.
Bar Night at the B 
7:00pm &#8211; 10:00pm 
Thursday, November 8th 
B Restaurant and Bar 
720 Howard St. | San Francisco 
(B is just above Moscone Center north)
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&#8220;The breadth and depth of research we are presenting at ASHG is a testament to the power of our web-based research model,” said 23andMe’s CEO Anne Wojcicki <a href="https://www.23andme.com/about/press/ashg_2012/">recently</a>.
The four-day event is expected to attract more than 6,000 people and it includes more than 400 presentations on the newest research in genetics.
Among those presentations include work from <a href="https://www.23andme.com/ashg2012/">23andMe</a>. The full schedule of the company&#8217;s presentations and posters is available online at <a href="https://www.23andme.com/ashg2012">www.23andMe.com/ashg2012</a>.
In addition our scientists will be participating on five panels and presentations speaking on a wide range of topics including direct-to-consumer genetic testing, the genetics behind sexual orientation, and the use of social media to research findings identifying more than 250 genetic associations with different morphological traits. Our scientists are also hosting 17 poster presentations.
We’re more proud of 23andMe’s Senior Medical Director Dr. Uta Francke, who’ll be receiving the William Allan Award on Friday. The award recognizes her for her far-reaching scientific contributions to human genetics.
Finally, 23andMe will also be raffling off a chance for academics to participate in our new Research Portal (see sidebar). This gives academic researchers from outside 23andMe to access de-identified, aggregated genotype and phenotype data from the 23andMe database. Institutions interested in participating can review criteria and apply at <a href="https://www.23andme.com/researchportal">www.23andMe.com/ResearchPortal</a>.

23andMe Presents Latest Research at ASHG

<img loading="lazy" decoding="async" class="alignright size-full wp-image-16736" title="CoryMclean" src="https://blog-api.23andme.com/wp-content/uploads/2012/11/CoryMclean.jpg" alt="" width="130" height="170">
(Editor&#8217;s note: Here is a <a href="https://blog-api.23andme.com/wp-content/uploads/2012/11/LRRK2_ASHG2012_cmclean_poster.pdf" target="_blank" rel="noopener noreferrer">link</a> to Cory&#8217;s poster presented at ASHG.)
Parkinson’s disease (PD) research has long been a priority at 23andMe. Our <a href="https://www.23andme.com/pd/" target="_blank" rel="noopener noreferrer">Parkinson’s research communit</a>y is one of the largest in the world with over 9,300 patients. &nbsp;Our <a href="https://www.23andme.com/about/press/pd_discoveries_plos_62311/" target="_blank" rel="noopener noreferrer">research</a> on the disease has been published in peer-reviewed journals. &nbsp;And our scientific contributions have received wide acclaim with generous help from the <a href="https://www.michaeljfox.org/" target="_blank" rel="noopener noreferrer">Michael J. Fox Foundation</a>, <a href="https://www.youtube.com/watch?feature=player_embedded&amp;v=9B9cgyEeULU" target="_blank" rel="noopener noreferrer">Muhammad Ali</a>, and many others. Given our dedication to and reputation for Parkinson’s research, it isn’t surprising that this disease is also the subject of our first whole-genome sequencing project.
Genotyping and whole-genome sequencing are two very different ways of approaching genetic data; one of the primary differences is that genotyping only looks at a subset of locations in your DNA whereas sequencing looks at every location. &nbsp;Sequencing, thus, generates a lot more data. &nbsp;23andMe’s Personal Genome Service ® is currently based only on genotyping but the company has been exploring sequencing as the costs of the technology have dropped.
23andMe’s first whole-genome sequencing project sequenced 50 customers who agreed to be a part of this research study. Each one of these customers has a mutation called G2019S in the LRRK2 gene that is associated with much higher risk for Parkinson’s disease. But not everyone with this mutation develops Parkinson’s.
Cory McLean, a computational biologist at 23andMe, is using sequence data from these 50 customers to try to discover why. 

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You, too, can contribute to research! How? One easy way is to answer the research <a href="https://www.23andme.com/you/23andwe/surveys/" target="_blank" rel="noopener noreferrer">surveys</a> at 23andMe.
Not yet a customer? <a href="https://www.23andme.com/store" target="_blank" rel="noopener noreferrer">Visit our store</a>!
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Of the 50 people with the G2019S mutation studied, 37 have Parkinson’s and 13 do not. Cory has compared the genetic sequence data of those affected and those unaffected in hopes of finding genetic differences between the two groups that help explain why some have developed Parkinson’s while others haven’t. The study also confirms that it is possible to generate accurate whole-genome sequencing data from saliva samples (rather than blood).
Cory will present some of his initial findings in a poster at the<a href="http://www.ashg.org/" target="_blank" rel="noopener noreferrer"> annual meeting of the American Society of Human Genetics</a> (ASHG) on November 7. The hope is that this genetic data will open up new avenues for Parkinson’s research.

Whole-Genome Sequencing of Parkinson’s Patients

<img loading="lazy" decoding="async" class="aligncenter wp-image-16708 size-full" title="Eoghan" src="http://35.88.189.111/wp-content/uploads/2012/10/Eoghan-scaled-e1674589605783.jpg" alt="" width="600" height="983">
(Editor&#8217;s note: Here is a <a href="https://blog-api.23andme.com/wp-content/uploads/2012/11/EH_ASHG2012poster_1.pdf" target="_blank" rel="noopener noreferrer">link</a> to Eoghan&#8217;s poster presented at ASHG.)
People often use the terms “genotyping” and “sequencing” interchangeably, but they are quite different ways of approaching genetic data.
One large difference is the amount of data generated. Genotyping, what 23andMe does, tells you your genotype at a small subset of locations in your DNA; full-genome sequencing tells you your genotype at every position. Moving from genotyping to sequencing is on par with replacing a picture of your DNA with one pixel-per-square-inch resolution with a picture with 3,000 pixels-per-square-inch resolution. In short, sequencing means a LOT more information.
As the price of sequencing continues to plummet, we foresee a time when sequencing will be affordable. &nbsp;23andMe has long lived in the world of genotyping, but anticipating this not-so-distant future, we are exploring how to move into this new world of sequencing. &nbsp;Making this move will require overcoming the many new challenges of dealing with such large amounts of data. Eoghan Harrington, a computational biologist at 23andMe, will be presenting a poster at the <a href="http://www.ashg.org/">American Society of Human Genetics</a> (ASHG) conference next month on how 23andMe has begun to be address some of these challenges in its first sequencing pilot project.
We must walk before we run. &nbsp;Rather than starting with full-genome sequencing, our pilot sequencing study was limited to just the exome portion of DNA, the part of the genome that is translated into proteins. &nbsp;The exome contains about 50 million base pairs, making it a good intermediate size between genotyping about 1 million base pairs and full-genome sequencing at about 3 billion base pairs.
Many of the challenges associated with full-genome sequencing still needed to addressed in this exome sequencing study: the storage and delivery of large (6GB!) files, making sure the data presented was accurate and trustworthy, and giving at least some context to the data returned.
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You, too, can contribute to research! How? One easy way is to answer the research <a href="https://www.23andme.com/you/23andwe/surveys/">surveys</a> at 23andMe.
Not yet a customer? <a href="https://www.23andme.com/store">Visit our store</a>!
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Eoghan and his coworkers were successful in overcoming these challenges. &nbsp;Because all the customers who participated in the sequencing pilot were already genotyped by 23andMe, we could check how often the two methods – genotyping and sequencing – reported the same genotype; the concordance between the two methods was 99.6-99.9%. &nbsp;Perhaps more importantly, the pilot project was successful in the eyes of the participants, many of whom have an extensive background in genetics and gave helpful and positive feedback. These successes will be highlighted in Eoghan’s poster next month at the <a href="http://www.ashg.org/">conference</a>.
23andMe has taken a look into the world of sequencing and has found it be an inviting place. We will take what we’ve learned from this exome experience to prepare for the day when full-genome sequencing will be an affordable possibility for everyone.

23andMe Moves into the World of Sequencing

<img loading="lazy" decoding="async" class="alignright wp-image-16700 size-medium" title="23andMe-Brian-049" src="http://35.88.189.111/wp-content/uploads/2012/10/23andMe-Brian-049-210x300.jpeg" alt="" width="210" height="300" srcset="https://blogcms.23andme.com/wp-content/uploads/2012/10/23andMe-Brian-049-210x300.jpeg 210w, https://blogcms.23andme.com/wp-content/uploads/2012/10/23andMe-Brian-049.jpeg 508w" sizes="auto, (max-width: 210px) 100vw, 210px" />
(Editor&#8217;s note: Here is a <a href="https://blog-api.23andme.com/wp-content/uploads/2012/11/Brian_Naughton_TruVar_ASHG2012poster.pptx-1.pdf" target="_blank" rel="noopener noreferrer">link</a> to Brian&#8217;s poster presented at ASHG.)
Rare events are hard to study, and this is especially true in genetics. Imagine you have a group of four people carrying a mutation and two of them are also afflicted with same medical condition.
<h6>Coincidence or correlation?</h6>
Well, this is a hard question to answer but it is exactly the sort of question that Brian Naughton, Founding Scientist at 23andMe, investigates with his current research.
Common genetic variants –  the sort of genetic variants reported in most of <a href="https://www.23andme.com/dna-health-ancestry" target="_blank" rel="noopener">23andMe disease risk reports</a> – only explain a small fraction of what scientists call disease <a href="https://blog.23andme.com/23andme-and-you/genetics-101/quiz-answers-heritability-demystified/" target="_blank" rel="noopener noreferrer">heritability</a>.  As genetic data becomes cheaper and more accessible, we are learning more about more rare mutations.  Researchers hope that these rare genetic factors will help explain the “missing heritability,” shedding light on why certain diseases run in families.
<h6>Meaning for Rare Variants</h6>
To assign meaning to these rare mutations, scientists have so far tried many approaches. One brute-force method is to scour the literature for any mention of a mutation and its biological implications.  This method, however, has its limitations.  Little to none may be recorded in the literature about extremely rare mutations. There are also reporting biases; for instance healthy individuals with rare mutations often don’t make it into the medical journals.  In addition, there are so many possible mutations that scouring the literature for each of them becomes intractable.
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<img loading="lazy" decoding="async" class="alignleft size-full wp-image-12163" title="small_23andMe_logo" src="https://blog-api.23andme.com/wp-content/uploads/2012/04/JRBgdIBXKIeVIdETJrxYIw_ttam_logo.jpg" alt="" width="24" height="40" />
You, too, can contribute to research! How? One easy way is to answer the research <a href="https://www.23andme.com/you/23andwe/surveys/">surveys</a> at 23andMe.
Not yet a customer? <a href="https://www.23andme.com/store">Visit our store</a>!
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Other scientists have turned to biochemistry to make predictions of a mutation’s impact.  Knowing how a specific genetic mutation – a DNA change – translates into changes in protein shape can go a long way towards predicting whether the changed protein will be functional or not.  However, prediction algorithms aren’t perfect and they are especially bad at predicting how relatively minor protein changes might have long term consequences.
<h6>A Different Approach</h6>
Rejecting these common approaches of addressing rare mutations, Brian has turned his attention to 23andMe’s large database, seizing on the power of large numbers.
With over 180,000 customers (many of whom have already filled out surveys about their medical history), 23andMe’s genetic database is the perfect playground for exploring the rare.  Brian can observe dozens of customers with very rare mutations that might not even occur once in a smaller database.
Brian has tested his new method on several mutations in the BRCA1 and BRCA2 genes.  Associations between breast cancer and certain mutations in these two genes have already been established (some of which are reported by 23andMe), and he aimed to replicate these associations using his new method in the 23andMe database. He will present his results for the first time to the scientific community next month at the <a href="http://www.ashg.org/" target="_blank" rel="noopener noreferrer">American Society of Human Genetics</a> (ASHG) conference in San Francisco, and he will not be alone.  Many other geneticists will also be addressing “missing heritability” and other genetic mysteries through the study of the rare and usual.  Understanding rare mutations is one of the next big frontiers of genetics, and 23andMe is proud to participate in the exploration of this new scientific territory.

Investigating the Rare

<img loading="lazy" decoding="async" class="aligncenter wp-image-16670 size-full" title="Mayim's connections" src="http://35.88.189.111/wp-content/uploads/2012/10/Mayims-connections-e1674589980933.jpg" alt="" width="450" height="435" srcset="https://blogcms.23andme.com/wp-content/uploads/2012/10/Mayims-connections-e1674589980933.jpg 450w, https://blogcms.23andme.com/wp-content/uploads/2012/10/Mayims-connections-e1674589980933-300x290.jpg 300w" sizes="auto, (max-width: 450px) 100vw, 450px" />
We plead guilty to occasionally geeking out on genetics, so it’s nice to see when someone else does it too.
In September, Moment Magazine got all nerdy and wrote about their<a href="http://www.momentmag.com/the-moment-magazine-great-dna-experiment/" target="_blank" rel="noopener noreferrer"> Great DNA Experiment</a>, in which they look at the 23andMe results of 15 notable Americans of Jewish ancestry and make some interesting genetic connections. It’s a good illustration of how our DNA can tell us about our interconnectedness.
The piece shows it’s not “six degrees” that separates these individuals from each other, but, in all but one case, no degrees of separation. This means that these individuals are all directly related to one another, albeit in most cases distantly. This was also news to the 15 participants.
All but one of the individuals has Ashkenazi Jewish ancestry. The one exception is Linda Chavez, the political commentator, who descended from Conversos, indivduals of Jewish and Muslim ancestry who converted to Catholicism during the Inquisition. Her ancestors eventually settled in New Mexico. But even in her case, although she isn’t directly related to any of the group, she is connected to each of the others individuals focused on in the piece by just one other individual in the 23andMe database.
The connections shown in the article are what prompted The New York Times columnist David Brooks and NPR “All Things Considered” host Robert Siegel to joke about learning they were distant cousins, sharing a common ancestor several generations back. Brooks kidded that he was “most surprised that our ancestors worked together on National Schetl Radio, on a program called ‘All Pogroms Considered.’” (Maybe the line needs a drum roll to work.)
The article shows the genetic connections between people like Mayim Bialik, the actress on the Big Bang Theory, and Stephen Dubner, co-author of Freakonomics. Or the connections between NPR’s Siegel, and Harvard Law professor, Alan Dershowitz, or his connections to 23andMe’s CEO’s mother Esther Wojcicki, a journalist and teacher. The magazine shows the connections and the amount of shared DNA, measured in centimorgans (cMs), to illustrate the “relatedness” of any two individuals. More closely related individuals share more DNA.
So why is all this interesting?
It is a very specific example of unexpected connectedness. We&#8217;ve written about this <a href="https://blog.23andme.com/news/make-that-three-degrees-of-separation/">interconnectedness before</a>. We’ve even seen unexpected connectedness <a href="https://blog.23andme.com/ancestry/23andmes-three-degrees-of-separation/">among 23andMe employees</a>. Even in cases with people who have vastly different backgrounds and experiences, one can use genetics to create a short chain of people to connect any two individuals to each other. A little geeky, yes, but pretty cool nonetheless.

Using 23andMe to Make Connections

<img loading="lazy" decoding="async" class="alignright size-medium wp-image-16580" title="23andMe-Arnab-035" alt="" src="https://blog-api.23andme.com/wp-content/uploads/2012/10/23andMe-Arnab-035-209x300.jpeg" width="209" height="300" />
What would you do if you found out that you had a rare and possibly life-threatening genetic mutation? You’d probably talk to relatives about your family medical history.  You’d likely visit your doctor and maybe a specialist.  You might even change your diet and exercise routines. Arnab Chowdry did all that and more. Arnab worked with other researchers to uncover the biological ramifications of the genetic mutation he carries and is presenting the findings at a national meeting of geneticists.
Arnab is a Senior Manager of Platform R&amp;D at 23andMe and recently discovered he carried a variant in the MYBPC3 gene that is associated with familial hypertrophic cardiomyopathy (HCM).  This was sobering news; HCM is most common cause of sudden cardiac death in young athletes by thickening the heart muscles and interfering with blood flow. As he has <a href="https://blog.23andme.com/23andme-customer-stories/my-heart-my-family-and-mybpc3/">blogged</a> about, his particular genetic mutation is considered a “variant of unknown significance.” That is just another way of saying the scientists don’t know very much about it. As a scientist himself, however, Arnab was in a position to change that.
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You, too, can contribute to research! How? One easy way is to answer the research <a href="https://www.23andme.com/you/23andwe/surveys/">surveys</a> at 23andMe.
Not yet a customer? <a href="https://www.23andme.com/store">Visit our store</a>!
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Over 160 other 23andMe customers also carry Arnab&#8217;s mutation.   Arnab, however, wasn&#8217;t able to verify the connection between HCM and the mutation in the 23andMe database because most people do not know their HCM status. Often a person doesn’t know they have the condition until it is too late, making association studies difficult.
Instead of studying the mutation in individuals, Arnab simplified the equation by considering the effect of the mutation in just isolated cells.  He teamed up with Mohammad Mandegar from the <a href="http://gladstoneinstitutes.org/">Gladstone Institute</a>, an independent research institute that focuses on biomedical research.  Mandegar and his team are creating cells that contain Chowdry’s mutation and hope to see how this mutation impacts cell function.
In keeping with 23andMe’s dedication to sharing its research discoveries with the broader scientific community, Chowdry will be presenting the initial findings from his and Mandegar innovative collaboration at the upcoming annual <a href="http://www.ashg.org/">American Society of Human Genetics</a> (ASHG) conference.  His poster illustrates how science can move forward when individuals own their genetic data.

Researcher Investigates His Own Genetic Mutation

<img loading="lazy" decoding="async" class="alignright wp-image-6586 size-full" title="23andMe_Logo_blog" src="http://35.88.189.111/wp-content/uploads/2010/05/23andMe_Logo_blog.jpg" alt="" width="350" height="349" srcset="https://blogcms.23andme.com/wp-content/uploads/2010/05/23andMe_Logo_blog.jpg 350w, 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-300x300.jpg 300w, https://blogcms.23andme.com/wp-content/uploads/2010/05/23andMe_Logo_blog-271x271.jpg 271w" sizes="auto, (max-width: 350px) 100vw, 350px" />
The<a href="http://geneticalliance.org/"> Genetic Alliance</a>, a nonprofit health advocacy organization, is asking for support to expand people’s right to their own health information by giving them direct access to their clinical laboratory test results.
23andMe supports this position and several of our employees are signing-on to <a href="https://blog-api.23andme.com/wp-content/uploads/2012/10/CLIA-Consensus-Letter-10-12-2012-1.pdf">a letter </a>the organization has put together advocating the rule change. If you agree, we’d like to encourage you to sign as well.
Here’s a few reasons why:
We believe people need quick and convenient access to test results so they can better manage their own health. We believe people should have the same right to access  their lab results as they do to their other medical records. And we believe that by giving people a simple way to access these records, it will improve the level of care and produce better health outcomes.
This proposed change is a long time coming. About a year ago, 23andMe submitted comments along with more than<a href="http://www.regulations.gov/#%21docketBrowser;dct=PS;rpp=50;po=50;D=CMS-2011-0145"> 150 others</a> to the Department of Health and Human Services about a proposed federal rule change (<a href="http://www.gpo.gov/fdsys/pkg/FR-2011-09-14/html/2011-23525.htm">CMS-2319-P</a>) that amends the current quality standards that are part of the <a href="https://www.fda.gov/MedicalDevices/DeviceRegulationandGuidance/IVDRegulatoryAssistance/ucm124105.htm">Clinical Laboratory Improvement Amendments of 1988</a> – known as CLIA. The change specifies that, upon a patient’s request, the laboratory must provide access to completed test reports.
These <a href="http://www.reginfo.gov/public/do/eAgendaViewRule?pubId=201104&amp;RIN=0938-AQ38">changes</a> are part of a series of reforms governing access and privacy around health records. About a dozen years ago, changes were first made that gave people access to their health information. Another change made a few years later gave people the right to obtain those records electronically, but because of a fluke in overlapping regulation, the rules didn’t apply to laboratory test results.
In addition to that rule, another related to Medicare and Medicaid only permitted the release of lab results to “authorized persons,” a term that doesn’t include patients themselves. The proposed change will correct these quirks in the law and give people the access to all their health records.
Beyond the fact that a person should have the right to their own health information, there are a lot of other very good reasons for access. We’ve mentioned a few already, but the Genetic Alliance’s <a href="https://blog-api.23andme.com/wp-content/uploads/2012/10/CLIA-Consensus-Letter-10-12-2012-1.pdf">detailed letter</a> gives plenty more including: saving money by avoiding redundant testing; giving patients the ability to quickly access this information in an emergency; and preventing harm by informing people of issues they might not have learned without access to their test results.
We invite anyone else who supports this guarantee for access to their clinical laboratory test results to sign on. If you or your organization wish to sign onto the letter below, send your name, credentials if applicable, title and organization to:<a href="about:blank"> Barbara Wilkinson &lt;bwilkinson@geneticalliance.org</a>
Thank you.

23andMe Supports Better Access to Health Records

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.

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