Privacy and Your Genes

privacy of your genetic data

I received an email from Promethease a few days ago that I wanted to share with all of you, along with my thoughts on keeping genetic data private.

Genetics and Privacy:

I’ve found in talking with people about genetics that there are often two responses:

  • One camp is all for genetic sequencing and shares their data all over the internet. They don’t think or care about what happens after they upload their raw data file.
  • Others will never get their genes sequenced for fear that the data will be used by the government or some nefarious organization. Usually, they make a comment about not wanting to be cloned…

Have you ever wondered what companies are doing with your genetic data? 23andMe, AncestryDNA, and MyHeritage all are there to enlighten us on our ancestral make-up and connecting us with forgotten relatives. Right?

If you pay for their health reports, 23andMe also gives you some insight into traits and health. A couple of years ago they also partnered with GlaxoKlineSmith, the giant pharmaceutical company, to use your data and survey responses for research purposes. Yes, you have to initiallyopt-in to the surveys. But I’ve found that a lot of people don’t understand that when they are answering a question such as “Are you allergic to pollen?” they are actually participating in a research study and allowing other researchers to use their genetic data.

Don’t get me wrong — there is absolutely nothing wrong with participating in genetic research studies if you want to. Researchers need genetic data. I just wish that everyone understood both where and how their genetic data was being used.

AncestryDNA has a beta test going where people can connect their health data to their family tree data. As a bonus, you can put in health conditions and diet/exercise information for relatives on your family tree. To me, the potential for revealing a close relative’s health problem – whether they want you to or not – is huge!

Back to the Promethease and SNPedia news… 

Promethease is a genetic report service that combines your genetic data with all of the entries into SNPedia.com and gives you a huge report.  It is one that I’ve recommended to people for quite a few years – mainly because they had a great privacy policy. The report is overwhelming and sometimes confusing, but it can pop up important things that you could otherwise have overlooked.

SNPedia is a wiki where lots of volunteer contributors have entered information and links to studies for tens of thousands of genetic SNPs. Kind of like a Wikipedia for genetic data.

Initially, Promethease was not storing user’s data, but they made the change a couple of years ago so that people could store their data with Promethease and run regular reports.  Handy, from a user’s point of view…

They sent an email recently saying that Promethease and SNPedia.com have been bought by MyHeritage. The press release from MyHeritage states that  “The acquisition of SNPedia and Promethease expands MyHeritage’s intellectual property in medical genetics. Going forward, SNPedia will empower us to broaden the scope of health reports provided by the MyHeritage DNA Health+Ancestry test and propel it to become a global market leader in consumer DNA testing.”

It goes on to explain that anyone with their genetic data on Promethease will have it transferred to MyHeritage: “Promethease currently contains hundreds of thousands of raw DNA files uploaded by customers who have tested with services such as Ancestry.com, 23andMe, and FamilyTreeDNA. The vast majority of Promethease customers are from the United States. As of November 1st, 2019, for existing non-European Promethease users only, the DNA data that is on Promethease will be copied to the MyHeritage website into new user accounts that will be created for them.”

If you have used Promethease in the past couple of years and do not wish to have your data moved to MyHeritage, you need to delete it before November 1st. 

Thinking that MyHeritage sounds familiar? Perhaps it is from the headline-making news from less than a year ago when they had a data breach and leaked the data for their 92 million users.

Your genetic data is worth something, and a large amount of genetic data is worth a lot of money. Combine that data with information on heath conditions, user data from various website tracking, demographics, and more…  it is a gold mine.

Most online companies where you can get a free or inexpensive ‘report’ on your data are gathering everyone’s genetic data for a financial reason. Today they may use your genetic data to market a personalized supplement to you. Tomorrow, they may be selling the company (including your genome file) to a pharmaceutical company.

 

You may now be wondering, and rightly so, what I do with the genetic data that I get from clients for making the top 5 consultation reports? I receive the data, save it to an offline storage drive, and then delete it after a month. Several have asked why I don’t have all of the reports online with a login and automatic updates…  the answer is mainly because I don’t want the liability for securing genetic data online longterm.  But there is also a part of me that realizes that if I had a treasure-trove of user’s genetic data, at some point I, also, would be tempted to sell.

Let me end this with encouraging you to read the fine print… Read the privacy policy and terms and conditions before you sign up for anything. And please, please take precautions with what you are doing with your children’s genetic data.

 

More to read:

How to delete your data from 23andMe

 

 

 



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