In October 2018 Mayo Clinic has entered an app world with Mayo Clinic GeneGuide, which is a DNA testing and educational app and is available through the Helix platform. While paying for access to one’s results and their re-analysis seems a fair idea, the same cannot be said for the educational part of the app. Users and non-users of the tests should be able to access the information about genetic testing and what it all means without having to pay extra for it.
There are already some educational resources on the internet, although mostly aimed at medical professionals to improve their understanding of genetics and genomics. However, Genomics Education UK for example is a great resource for those who are not familiar with genetics or medicine. geneIQ was initially conceived as a portal which will be helping people to access genetic counselors and other interpretation services. However, it became clear that there is also a great need for basic education in genetics, for explanation of the new technologies and tests available to the public. This is the main direction it is heading right now.
Many companies are charging for the apps which should be free to those who use their services with providing paid options if users want to add extra analysis to what was already done with their data. We seem to be loosing the balance between costs to develop, profits and needs of the customers. For most part a great mobile site is as effective as some of the apps which are not much more than websites rolled into an app. Cost of a development of a true app with functionalities that would be desirable are higher than people may think, especially when data accessed is to remain secure. Differentiating this access from the educational tools is critical for better public understanding of what genetic testing is capable of delivering is important.
Currently available genetic tests which are part of direct-to-consumer (DTC) genetic testing are not always clearly described on the respective websites. Information is limited and people select them not because they make a conscious decision that this is the best test for them but because their friends done them, their family done them or because there is special pricing. The standard of testing itself is pretty high, the main issues are with analysis and this is the part that varies drastically between companies. It is not uncommon for people to complain that tests do not correlate with genealogical records or vary drastically if done through two different providers. This variability in the interpretation of the data is a big problem. While for ancestry applications it is not critical if estimations are not accurate, when it comes to testing for disease risk factors such differences are not acceptable.
Thus far most analysis was done by the companies doing the testing, however, this might be changing soon. We are seeing development of new companies eager to analyze your genetic data from tests done by others. I have not yet looked at them in details but this analysis will come. The issue at the moment is that DTC genetic testing companies do not always return your raw data and even then it can be incomplete making re-analysis by someone else difficult or impossible. I can see this being a case due to companies using proprietary technology or mix of variants in their tests. If the company you intending to use will not provide you with your raw data, shop around because many do give you access to that data. In fact, you can just get an app access to have it re-analyzed for some other traits.
Now we are coming back to the initial question, should the educational part of a genetic education app be free or is it OK for companies to charge as much as $200 per app. What extra information do those apps provide that is not included in analysis returned to you after testing? What information about genetics, genomics, genetic testing are most interesting for you? Feel free to leave a comment or use contact us form. I will be happy to take a direction from you as to the future topics.
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