Show HN: Free genetic reports from your genome | Hacker News Reader

Show HN: Free genetic reports from your genome

meports.com

16 pointsBeefin40 comments

Uh...I'm definitely not sharing my genome data with some guy named Ethan at unnamed company.

Valuable comment. How would we convince you that the genome file is not stored beyond the report generation process?

Honestly, short of me building and running the code on my personal machine, I don't think there's any way I'd trust you on your word.

I don't understand why you have your privacy policy as it is right now, at all.

Privacy is important to us. We want to do it right. (...) At no time is your DNA data shared - or sold - to any external party, period. (...) If a genome is uploaded, but the user does not continue and generate a report, the uploaded genome is automatically deleted immediately. As soon as a report has been generated (no more than 10 minutes) the uploaded genome is deleted.

Wow! A company that isn't out to steal your data! Great!

When using Meports you are uploading your genome to our central website for analysis. (...) By uploading your genome you grant us a temporary, limited, revocable, royalty-free, world-wide license to process and use your genome for the purpose of providing you with the service.

"Vision: We believe in using data and software in order to maximize everybody's quality of life. "

(Actually - you even have a different company "vision" on gene.meports.com. Which one is it?)

So what does this mean then? Are you using the word "analysis" to trick people into thinking you don't store data derived from the genome on your servers, but you're not storing the literal file someone is uploading? While, at the same time, reassuring clients you'll never store or sell their data?

Not sure I understand your concern: It’s standard boilerplate for the case where private data is required to run an analysis, but is not otherwise used.

Not saying that it should necessarily be trusted but the wording isn’t problematic. What is problematic is the complete lack of legal security.

Definitely not boilerplate. The privacy policy is quite light, doesn't define terms like "external parties", doesn't even have the company's name or origin.

I was talking specifically in the context of OP’s comment. I otherwise agree with you. But the wording that OP seems to complain about simply means that, in order to perform the requested analysis, the company needs to temporarily store your data.

I don't see any other way to do it haha

Yeah I mean Im a one man shop, have no lawyer. The privacy policy is this: we don't store your genome or any identifying information beyond the report which is automatically deleted (or deleted at your request) within 48 hours.

Is there anything else you want to know?

https://gene.meports.com/report/2347380d-ac31-4f4a-b973-6e18...

sample report lists GBA under Gene column. I click link, get sent to wikipedia entry for Game Boy Advanced...

Hahahaha, looks like the disambiguated Wiki page is more relevant:

https://en.wikipedia.org/wiki/GBA_(disambiguation)

and the gene:

https://en.wikipedia.org/wiki/Glucocerebrosidase

I don't even see a name of the creator on this site. Personally, I won't ever submit personal genome data to an anonymous site like this, and no one else should either. Aren't there also legal implications to hosting personal health data online like this? I understand they claim to delete the data after the processing, but can we really trust an opaque process like this?

My name's Ethan, you can email me at ethan@meports.com and my personal website is ethansteininger.com. All open !

What aspects of transparency would you be looking to learn more about in order to grant more trust?

I think the biggest concern that people might see is how are you making money. With promethease, we give them a small amount of money. People are going to assume that the only way to generate income on this project is the selling of user data or keeping it to build a database to use for analysis and then selling that data.

This site could use a bit more information about how the analysis is being done and what benefits it offers over similar sites.

Great feedback, I appreciate it. Our office's page is how we make money. Offices embed the button on their webpage and receive your report upon which they're able to prescribe certain preventative plans.

I'd like to see a technology explanation (in gory detail, and open sourced would be better) for how you keep the genome data ephemeral and secure and how you comply with HIPAA laws as well as the FDA. This software has features for which you very likely need to submit a 510k and associated regulatory paperwork, especially if you provide the data to a doctor to use to prescribe any sort of medical care.

This is incredible advice I really appreciate it.

Looking at the OP history, they only ever posted content related to meports.com.

Judging by the titles of the submissions and on content archived by the wayback machine, meports was originally intended to be a "life dashboard" (mood, workouts, etc..) and pivoted approximately a year ago towards its current form, a meta analysis of genome.

Yep, it was a pivot. Is there something wrong with that?

No judging here. I'm curious why you pivoted away from health tracking?

I wanted to do something that had larger humanity potential. IMO human genetics is a top 3.

No indication of how this site makes money, nor who they are. I would be very suspicious.

Fair enough, the offices page (custom report generation for offices) is our revenue model: https://meports.com/office

Does this mean, you don't store or distribute my DNA, but the risks you calculated from it?

The risks are stored, but deleted after 48 hours.

Who's running this? What country are they based in? Why should I trust meports.com not to misuse my genome?

I'm running this - based in US. That's a great question and I'm open to ideas. How can I prove that the genome file isn't stored beyond report generation?

Hi, thanks for replying! I think the only way would be to make this a client-side application somehow. This is extremely sensitive data, so the only way I can trust that you'll never misuse it is if I never give it to you in the first place.

This looks like it might need FDA approval.

How is it any different than Promethease from an FDA perspective?

Tangentially, what does this offer that Promethease doesn't? I ask because I've run genomic data through Promethease and I'm wondering if running through your service would be redundant.

Yeah it would be redundant. the call to action once you generate a report is to send it to your provider.

Is this safe?

Define safe haha. The genome doesn't stay on our servers for more than 5 mins.

can't get it to use any data sets that i have in the normal .vcf formats, etc

What testing providers share your raw genome in an .vcf format?

Nobody shares your genome.

Promethease though allows for gvcfs and other formats so that you can upload more comprehensive sequencing data with full coverage.

Maybe I should've rephrased... my question is which genetic testing providers give you a raw genome file in .vcf format? If none then I think we're talking about two different things.

https://customercare.23andme.com/hc/en-us/articles/212196868...

23andme is casual genetics, and misses a lot of the variants that are important clinically. These ancestry sites are the entry point, but not the definitive answer.

SNP chips are on the way out and whole genome/whole exome are becoming much cheaper. For many people (myself included) who are trying to diagnose a disease or understand our personal genetics at a base-pair resolution then VCF is the standard format.

Ancestry and 23andme use proprietary formats but all independent labs/clinics/commercial operations use VCF and it is the format that patients will have. If a patient is dropping a grand or three to get their personal genome, they are going to be receiving the raw data in VCF or BAM.

As a side note, your site asks if people "had their genome sequenced" but 23andMe results aren't a genome. It is a peek at a fraction of the genome. Your site doesn't accept whole genome data.

Also, if by "offices" you mean doctors offices or any kind of medical professional, then you are putting them at risk. Variant calls delivered to patients from a medical professional need oversight. Calls need to be made in a CLIA laboratory and pass through a genetic counselor. It is fine to skirt regulations if an individual is analyzing their own genome, but once you insert a third party, then you are bring in legal issues, reporting issues, and HIPAA issues.

Your comment was very insightful. I've considered 23andme and similar services before, and it is helpful to understand that a fractional amount of one's genome is all that is provided/analyzed. I'm excited to see that whole sequencing has broken the $1000 barrier some time ago, and was available recently for $200 as a promotion! (https://www.wired.com/story/whole-genome-sequencing-cost-200...)

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