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I am a private individual and I want my exomes sequenced, I don't know of any place that will keep my data confidential as I read reports of companies sharing this data with insurance companies. I tried looking into a number of university research centers but none of them sequence DNA of private individuals. Does anybody know of any university that does WES of individuals or a place which can keep my information confidential? Many thanks in advance for your replies!

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    $\begingroup$ There are private companies that sequence DNA; you have to pay for it. They would have legal documents in place to maintain the confidentiality of the data. Or go to your nearest university/research institute and offer to provide samples in exchange for some information (that you'll not disclose until they allow you to). That said, your question is off-topic because it is not about a biological concept. $\endgroup$ – WYSIWYG Mar 27 '17 at 3:35
  • $\begingroup$ Most companies will genotype a number of SNPs but won't do full exome sequencing. Is there any reason you'd want your exome sequenced? With SNP association studies we have, one can already tell quite a bit about health related questions. [23andMe](23andme.com) for example does a good job on this matter. $\endgroup$ – Remi.b Mar 27 '17 at 4:16
  • $\begingroup$ May I ask why you want your exome sequenced? Depending on what information you'd like that may or may not be the best approach. $\endgroup$ – Artem Apr 2 '17 at 22:13
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I will be doing my own whole genome sequencing soon. The best reputable company I've found is Veritas. For 999 dollars and at a pretty decent depth (30+ reads). They will produce a canned report of diseases and traits similar to cheaper alternatives, but also for another $100 will provide you a complete Variant File.

My understanding is that they will only use your data after anonymization for scientific endeavors, but I still need to finish reading the fine print. See here under privacy. Good luck!

p.s. I also would skip exome and go with WGS since the price has come down. More and more diseases and traits are being linked to variation in intergenic regions of DNA.

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The two companies you are most likely looking for that perform DTC whole exome sequencing are Genos Research and Full Genomes Corporation. Both companies make a Promethease compatible file format and provide a BAM file.

Full Genomes Corporation provides full genome sequencing at various depths, exome sequencing, genome depth ancestry service, and BAM file interpretation. They don't have the most user friendly service, but I'm told they aren't too hard to work with either. I didn't see anything in their privacy policy to suggest they are sharing your data to research. https://www.fullgenomes.com/

Genos Research is a small company that sends out your sample to be sequenced. After 9 weeks they provide a variant report, BAM file, a VCF file, and a file formatted specifically for Promethease. They don't share your information. Instead they present to you a list of research projects they hope you will volunteer your data in exchange for money. https://genos.co/

Another option you have is the Personal Genome Project. Their goal is to establish a public database of genomes and medical records. This is one were if you don't mind the privacy risk they will sequence your genome as they have funding to do so. It might take them some time to get around to your samples. They also want your medical records and other information.

Personal Genome Project is deidentified. So a person can't just google to see if someone is a member of the PGP. But it is possible to take the genetics and demographics information and search for an owner name in public databases. It is not hard to prevent such searches by making small alterations to your date of birth, broaden your area of residence, and keep your data out of DNA ancestry databases. On the other hand some people are proud to release their identity and information to the public. http://personalgenomes.org/

Veritas Genetics. They only provide full genomes, and clinical products. My understanding is you will need your own doctor to approve the test, whereas Genos Research provides it on staff. For 999 dollars they will provide the same information that Full Genomes Corporation if you buy their full genome product. Their VCF file isn't fully compatible to Promethease, so it is of limited use on third party tools. You could hire Full Genomes Corporation to generate such a file if you wish. You have the option of volunteering your data for research. I guess they donate your information to the Personal Genome Project if you agree. They can also for an extra fee perform a clinical evaluation of specific genes. https://www.veritasgenetics.com/mygenome

These is also Gene By Gene. They do mostly clinical evaluation and research. But they are user friendly to the person that wants to spend, in my opinion, too much to get their exome or genome sequenced. They are the company behind FamilyTreeDNA. https://www.genebygene.com/pages/research

For those whom don't know, Promethease (https://www.promethease.com/) is a third party tool for generating a health report using a genetics test and the SNPedia wiki. It was meant to be free, but since it involves heavy amounts of server usage they charge a small fee to cover the cost of service.

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