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Mailing Away Your DNA

12/14/2018

7 Comments

 
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by David Hagenbuch, founder of Mindful Marketing & author of Honorable Influence

Looking for a unique gift for a family member this holiday season?  Have you thought of surprising them with the ‘gift of ancestry’?  DNA testing has become increasingly easy, popular, and affordable, but do the benefits of sending one's saliva for genetic analysis outweigh the costs?
 
The market for genetic testing exploded in 2017, and it keeps growing.  Some predict sales of over $22 billion by 2024,  driven by top competitors like 23andMe, AncestryDNA, Family Tree DNA, MyHeritage DNA, and Living DNA.  Over 12 million people already have had their DNA tested.
 
What exactly does DNA testing do?  It depends on the test, of which there are three main types:
  • Autosomal:  Both men and women can take this test, which estimates an individual’s ethnicity and cousin matches on both maternal and fraternal sides over about 5 to 6 generations.
  • YDNA:  Only men can take this test, which tracks Y chromosomes passed from fathers to sons over many generations.
  • mtDNA:  Both genders can take this test, which examines genetic markers only along mothers’ material lines, and also provides the user’s haplogroup.
 
Autosomal tests appear to be the most popular of the three, as they’re the ones we most often see advertised, with consumer-friendly price points between $49 and $99.  These tests are good at helping users fill out their family trees.  AncestryDNA, for instance, claims it can search for relatives of the test taker among its 10 million-person database and promises to “confirm ethnicity percentages and close relationships with a high level of accuracy.”
 
AncestryDNA is also able to help users see migratory patterns through its Migrations tool.  This feature identifies a subject’s ancestors “associated with one of more than 300 genetically based communities in the years between 1750 and 1850” to determine migration paths in the U.S. and overseas.
 
Some autosomal tests have pushed the information envelope even further by providing health reports.  For example, 23andMe’s Health+Ancestry test informs users of whether they appear to be a carrier for more than 40 genetic conditions, it provides insights on genetic-related wellness indicators such as lactose intolerance, and it identifies genetic risks for things such as Parkinson’s, late-onset Alzheimer’s and Celiac disease. 
 
People who purchase DNA tests certainly receive unique information that’s at a minimum entertaining, if not educational and possibly helpful in addressing potential health problems.  Considering how much many consumers spend on a dinner out, a concert, or a ballgame, a genetic test seems like a pretty good deal.  However, there are potential costs for DNA testing beyond the initial cash outlay.
 
Perhaps the biggest nonfinancial cost is the risk of lost privacy.  Genetic testing companies seem to have safeguarded customer information so far—there’s yet to be a major data breach—but the potential risk from carelessness or maleficence is considerable according to New York Senator Chuck Schumer (D), who contends: “Now, this is sensitive information, and what those companies can do with all that data, our sensitive and deepest information, your genetics, is not clear and in some cases not fair and not right.”
 
The Federal Trade Commission (FTC) appears to share Schumer’s apprehension as evidenced by its investigation of the data policies of 23andMe and Ancestry and by the following statement: “A major concern for consumers should be who else could have access to information about your heritage and your health.”
 
What exactly are the risks of misappropriated DNA data?  One possibility is that some organizations may conduct controversial research such as looking for connections between race and intelligence.  Although such risks for entire people groups are probably few, there are many risks that could impact specific individuals.
 
This past spring, California detectives revealed that they tapped a public genealogy database to break the longstanding case of the Golden State Killer, identifying suspect Joseph James DeAngelo.  Although few may object to the use of public DNA data to catch a serial killer, the possibility of government accessing such information for other reasons gives many people pause.
 
For instance, what if police were to use genetic information to predict those likely to commit crime, along the lines of the 2002 sci-fi thriller Minority Report?  Such use is farfetched, but it’s not unreasonable to imagine public officials employing DNA data to identify government protestors or others who reject their policies.
 
Perhaps even more realistic is the possibility of businesses leveraging DNA data for profitability purposes.  Life insurance companies, for example, might analyze genetic information in order to determine if someone is a good policy risk.  Likewise, any company could take a similar tack in deciding whether to hire a prospective employee.
 
But, do these risks really exist if companies safeguard users’ data and only share it  in anonymous form?  First, an endless series of high-profile data breaches suggests that hackers are capable of penetrating the defenses of the largest and seemingly most secure organizations.  Second, when people submit genetic tests, they often provide information that allows for individual identification, e.g., age, gender, address.  Third, police and government might pressure companies to share their DNA data.
 
Why, then, do people continue in droves to mail their DNA to genetic testing companies and why do most of those users agree to share their DNA with the firms’ research partners.  Maybe consumers don’t have a good understanding of the risks.  More likely, they recognize that the potential risks are very remote, while the benefits they receive are very real and meaningful, for instance:
  • Knowing one’s family history:  It can be deeply satisfying to learn things about one’s ancestors and the places from which they came.  That kind of information often helps us better understand ourselves.
  • Realizing potential health risks:  Of course, it’s important not to obsess about such risks; however, such knowledge can be a very helpful lens through which to view our bodies and perhaps take preventative steps 
  • Reuniting with lost family members:  This benefit doesn't apply to most genetic test takers, but some have discovered lost siblings and other relatives through the process.  
 
Life is full of risks—much of what we do to survive and thrive involves deciding which risks are worth taking.  Perhaps the risks of DNA testing will increase over the coming years.  Right now, though, the risks seem remote while the benefits are real, which makes it easy to understand why so many people take genetic tests.  It also makes it reasonable to suggest that the firms offering the tests are responsible for “Mindful Marketing.”


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7 Comments
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12/22/2018 08:28:28 am

Your ideas are beyond imaginable. Personally, I didn't think that it was the best gift we could ever give, and I am happy to see that this is a booming trance nowadays. DNA testing is commonly heard on television; for most of the drama series I have watched have that element. But now that you gave me a new concept about this one, I realized that it was possible! Thank you for giving me an idea, and I coudn't be more thankful about that!

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Makayla Miller
1/13/2019 12:53:39 pm

My family bought my dad an AncestryDNA kit for Christmas because he loved using the Ancestry.com site to track the documents of his ancestors. The costs mentioned in this article were honestly never any that I considered could be real risks, so it was interesting to contemplate whether they were great enough to not take part in using a product like this. Personally, I don’t think these costs outweigh the benefits for the same reasons mentioned in the post, they seem to be realistic but unlikely. I also think that marketers for these products must understand that there is a heightened concern for privacy and safety given the recent social and cultural environment, but they also understand that many people don’t allow unlikely risks to rule their decision-making process because doing so would be a greater cost than the actual risks pose. It’s like people deciding to never go to the movies, or the mall, or New York City for fear of shootings or terrorist attacks. I think today people see allowing unlikely risks to rule their lives as a greater cost than the risks would be, which is why there is a demand for these genetic testing kits. The enjoyment and fulfillment, or benefits, my dad receives from tracing his ancestry would definitely outweigh the risks, or costs, of his DNA being hacked into and misused.

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Ian Tan
1/13/2019 09:26:50 pm

It's insightful to think of the long term costs and risks of mailing away one's personal information (i.e address, email, DNA samples) to get more personal information - your ancestral history. It seems that if information this sensitive is leaked, or if the samples could be accessed by an outsider group somehow, it could be misused somehow, especially with the increasing sophistication of genetics technology. The command of governmental forces over companies like AncestralDNA is also a disturbing prospect. Still, there is so much distance between that future possibility and now. It would also be in the public benefit to sign a contract with AncestralDNA, under the agreement that the firm will protect their personal information against other entities or risk being sued. One would think that this is already part of the understanding between company and client, anyway. It isn't good marketing to withhold client confidentiality.

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Zhongyi Cai
1/14/2019 02:53:26 am

The benefit of DNA test is clear, no one can argue with that. However, cause it's still a grey area in terms of ethnicity, even though DNA anticipation and manipulation technology seems to be quite developed, most Technic were band or can only apply to animals that's used for test. One problem some news that's being popular last year, is that one scientist manipulates people's DNA, and he actually give breed for babies that got their DNA manipulated so they wont get HIV. Eventually this is causing great ethical discussion in China, some people think it's reasonable to do so while others think it's not.
Another problem is about privacy. A similar example that I can give is like big data that's popular right now. Data were collected in all kinds of ways and now majority of people don't have that much of privacy. Eventually a famous example is Walmart sent baby supplies to a girl that's under 18 because her purchase pattern follows along with their big data sample. Although that girl is pregnant, we do have to think about our privacy and how these company are going to use our personal data.

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Chad Williams
3/16/2019 08:08:36 pm

I think you make a good case for the mindfulness of DNA testing from the perspective of the testing company. A lot of the risks you pointed out are much on the contention of the actions of external parties (hackers, government, etc). It must be the imperative of these testing companies to ensure that their data is protected, while the public should take steps to oversee these companies to make sure that data is not being sold.

I also think that this industry speaks to one of those difficult situations where a revolutionary product can have negative societal consequences that are not considered by the general public due to the attractiveness of that product. Consider smartphones; products which have been mass-adopted, yet have caused issues of de-socialization and over-stimulation.I suppose the best steps to take is to be vigilant, and look to the mindfulness of the overall company and its marketing plans.

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Tyrell Thompson
3/19/2019 01:07:38 am

I appreciate your case to be mindful about these kind of testings. I see the validity in the idea that's it's so interesting, and frankly, quite fun, to send your DNA away and wait for the surprise of seeing where you come from. There is something so freeing in knowing your identity, especially if you don't really know where you are from. We are such a melting pot now that who knows what you have in you! It's fascinating. From what you have written, I think the benefits do outweigh the disadvantages. It's something that really doesn't harm you, and who knows, you could even meet up with a lost loved one eventually.

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Jazmin
3/19/2019 01:32:58 am

Once again, thank you so much for providing this information to the public. Very thoughtful and provocative content!!! I think this is such a relevant topic because I know a handful of people who really want to pursue such research and who already have submitted their saliva research purposes. I think this blog really shows how much information you are thus for agreeing to release. If anyone is willing to consent for such release that is great, but I do not think that many people are currently aware.

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