5 ms·
Show HN: Free genetic reports from your genome
- i_am_nomad 8y agoThis looks like it might need FDA approval.
- Beefin 8y agoHow is it any different than Promethease from an FDA perspective?
- byproxy 8y agoTangentially, 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.
- Beefin 8y agoYeah it would be redundant. the call to action once you generate a report is to send it to your provider.
- chris_mc 8y agoI 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?
- Beefin 8y agoMy 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?
- nickthegreek 8y agoI 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.
- Beefin 8y agoGreat 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.
- chris_mc 8y agoI'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.
- Beefin 8y agoThis is incredible advice I really appreciate it.
- ajiang 8y agoUh...I'm definitely not sharing my genome data with some guy named Ethan at unnamed company. https://meports.com/privacy https://meports.com/privacy
- hughes 8y agoWho's running this? What country are they based in? Why should I trust meports.com not to misuse my genome?
- Beefin 8y agoI'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?
- hughes 8y agoHi, 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.
- flipp3r 8y agoI 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?
- klmr 8y agoNot 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.
- ajiang 8y agoDefinitely 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.
- klmr 8y agoI 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.
- k__ 8y agoIs this safe?
- Beefin 8y agoDefine safe haha. The genome doesn't stay on our servers for more than 5 mins.
- cryoshon 8y agocan't get it to use any data sets that i have in the normal .vcf formats, etc
- Beefin 8y agoWhat testing providers share your raw genome in an .vcf format?
- searine 8y agoNobody shares your genome. Promethease though allows for gvcfs and other formats so that you can upload more comprehensive sequencing data with full coverage.
- Beefin 8y agoMaybe 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-Accessing-and-Downloading-Your-Raw-Data https://customercare.23andme.com/hc/en-us/articles/212196868...
- searine 8y ago23andme 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.
- nickthegreek 8y agohttps://gene.meports.com/report/2347380d-ac31-4f4a-b973-6e18ff4c05a3 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...
- Beefin 8y agoHahahaha, looks like the disambiguated Wiki page is more relevant: https://en.wikipedia.org/wiki/GBA_(disambiguation) https://en.wikipedia.org/wiki/GBA_(disambiguation) and the gene: https://en.wikipedia.org/wiki/Glucocerebrosidase https://en.wikipedia.org/wiki/Glucocerebrosidase
- karambahh 8y agoLooking 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.
- Thespian2 8y agoNo indication of how this site makes money, nor who they are. I would be very suspicious.
- Beefin 8y agoFair enough, the offices page (custom report generation for offices) is our revenue model: https://meports.com/office https://meports.com/office