Know before you upload

For folks whose primary goal with DNA testing is to get some sort of handle on their overall health situation, Promethease has always been one of the available options and, right now, through the end of the year, it’s offering to provide its reports for free.

But before you jump in with both feet, remember always that when it comes to sharing your genetic information with others, and when it comes to medical data from DNA results, you need to stop, think and know before you upload.

PrometheaseFirst, what we’re talking about here. Promethease is “a computer program developed by the SNPedia team which allows users to compare personal genomics results against the SNPedia database, generating a report with information about a person’s attributes, such as propensity to diseases, based on the presence of specific single-nucleotide polymorphisms (SNPs) within their genome.”1

It “builds a personal DNA report based on the scientific literature cited in SNPedia and a file of genotype (DNA) data. Customers of DNA testing services (23andMe, FamilyTreeDNA, Ancestry.com, Complete Genomics, …) can use it to retrieve published data about their DNA completely independent of whichever company produced the data.”2

SNPedia, in turn, is a wiki devoted to the medical consequences of DNA variations, including software to analyze personal genomes. It describes itself this way:

SNPedia has been launched to help realize the potential of the Human Genome Project to connect to our daily lives and well-being.
Our genes are important, and the variations in them help define our uniqueness. Yet at the same time they help forge links between us, as many of us carrying certain variations find ourselves facing similar medical issues. SNPs are those variations. SNP stands for Single Nucleotide Polymorphism and means variation in the same place (polymorphism) within the DNA sequence.

 

SNPedia is based on a wiki model, in order to foster communication about genetic variation and to allow interested community members to help it evolve to become ever more relevant. We anticipate that as the cost of genotyping (and especially of fully determining your own genomic sequence) continues to drop, we’ll all want to know more – a lot more – about the meaning of these DNA variations. And SNPedia will be here to help.3

What Promethease does is compare your raw autosomal DNA test data — and you can use your raw data from any of the three major test companies (Family Tree DNA, 23andMe and AncestryDNA) — to information collected from peer-reviewed scientific journals at SNPedia to “create a personal report linking your DNA variations to the information published about them.”

Usually, it costs a whole whopping $5.00 to get a Promethease report. You upload your data, you get your report, and your data is then deleted from the system within 24 hours and the report itself within 45 days. But, right now, Promethease has a promotion going on. It’s now allowing free data uploads until December 31, as a holiday gift to users, and you can get updated reports free as well.

And, yes, there’s a catch. So know before you upload.

What Promethease wants you to do is not have your data deleted right away. It wants you to agree to have your data stored on its system so it can use your data, with identifying information removed, together with the data of other users. The stated purpose is “to better assess the accuracy of the raw data produced by different companies, platforms and technologies (and) to provide the best, independent assessment of true vs. false data in future Promethease reports and add new features.”4

This is a big change from the way Promethease has operated in the past. If you agree to this, you’re giving Promethease “a temporary, limited, revocable, royalty-free, world-wide license to process and use your genome for the purpose of providing you with the service. i.e., for generating and re-generating reports, and if you created an account and stored your genome, also to use it with new genetic features of the service we may develop in the future, at no additional cost to you.”5

Promethease says that “At no time is your DNA data shared – or sold – to any external party, period. We also do not sell any products like vitamins or supplements” and that “We do not claim any ownership rights in your genome and it belongs to you only.”6 But, as Promethease candidly admits, “We recognize and respect the need to take care when handling your personal information. However, especially in the world of “genetic privacy”, there are no guarantees.”7

Now you can still get Promethease reports without agreeing to the storage option. It’s a matter of choice. But you do have to think about it — know before you upload.

To get any reports, whether you agree to storage or not, you’re going to have to sign off on a set of disclaimers:

Before you may use Promethease to retrieve information about the human genome, you must read and agree to the following statements. Please read each statement and check the box next to each one and then click ‘I Agree’.
• I understand that the information provided in my Promethease report is based on SNPedia.com and that my report is for educational and research purposes only.
• I understand that my report is deleted after 45 days but that I can download it before it is deleted and that I can regenerate it, if I create an account.
• I realize that most published reports about DNA variations explain only a small part of the heritability of a trait, and they also don’t take into account how different variants might interact. In addition, published reports typically ignore environmental, dietary, microbial, medical history and lifestyle factors, any or all of which may well affect my true risk for any trait or disease.
• I am aware that I am strongly encouraged to discuss my Promethease report with a doctor, genetic counselor or other health-care provider prior to making any medical or reproductive decisions. I also acknowledge that I am advised to confirm any significant finding discovered in part through the use of Promethease by an independent, clinically validated test for use in connection with the medical trait in question.
• I have read and understand the Privacy Policy and the Legal Terms and Conditions of this website. I agree to these conditions.
• I accept the risk of learning that I may be at high risk for a debilitating disease.8

And there is one more thing to consider. On that “I am strongly encouraged to discuss my Promethease report with a doctor, genetic counselor or other health-care provider” part, here’s one more “know before you upload” consideration: the views of at least one genetic counselor who’s also a genetic genealogist on Promethease reports. Brianne Kirkpatrick of WatershedDNA is not a fan of these reports. So, before you upload, take a careful read of her comment here.

It’s your choice.

But know before you upload.


SOURCES

  1. ISOGG Wiki (http://www.isogg.org/wiki), “Promethease,” rev. 31 Oct 2017.
  2. Promethease,” SNPedia (http://www.snpedia.com/ : accessed 9 Dec 2017).
  3. SNPedia:About,” SNPedia (http://www.snpedia.com/ : accessed 9 Dec 2017).
  4. Email, “Get up-to-date Promethease reports for free,” Promethease to users, 7 Dec 2017.
  5. Privacy statement,” Promethease (https://www.promethease.com/ : accessed 9 Dec 2017) (emphasis added).
  6. Ibid.
  7. Terms of use,” Promethease (https://www.promethease.com/ : accessed 9 Dec 2017).
  8. Promethease.com (https://promethease.com/ : accessed 9 Dec 2017).
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