Best Disclaimer on sharing personal genetic information thus far

My vote goes to https://opensnp.org/signup

This sentence sums it all There is zero privacy anyway, get over it 

copied from the above URL

By signing up for openSNP you declare that you have understood the possible risks and side-effects that can occur by making your genetical and medical information available on this platform. In short:

• Data uploaded to the internet can not be fully deleted, there may always be a backup somewhere
• By publishing data you expose information about you and your next of kin worldwide
• Genetic and medical information can be used by employers, insurance companies and the government to know more about you than you would like
• new findings about your genotypes can be negative

What has been seen can not be unseen

You agree that all data you upload to openSNP will be freely available online (well, except your mail-address and password) under a Creative Commons Zero license. The data can be viewed and downloaded through this webpage, RSS-feeds, in future maybe via an API and via FTP. Although you can delete your data from openSNP this does not guarantee that no one else did already create a backup of the data (who may re-publish the data somewhere else).

There is zero privacy anyway, get over it

Although you can upload your data using a pseudonym, there is no way to anonymously submit data. Statistically speaking it is really unlikely that your medical and genetic information matches that of someone else. By uploading you do not only disclose information about yourself, but also about your next kinship (parents and siblings), that shares half of a genome with you. Before uploading any genetical data you should make sure that those people approve of you doing so. This is especially important if you have monozygotic twin, who shares all of your genome!

Jobs, insurance, the government

Medical and genetic data can be used to discriminate people. Due to medical or genetic information an employer may not give you a job, an insurance company may request higher payments and who knows what any evil™ government will do with your data? Although some countries have laws against genetic discrimination, these laws certainly will not cover possible discrimination scenarios and could change in the future. Again: These are side effects and risks which also can apply to your kinship, if you chose to upload this information.

Knowledge about genes and SNPs is not static

Nearly every week there are new scientific publications that find new associations between certain traits (like diseases) with existing genetic information. Because of this you should not publish your data just because it currently looks harmless and unsuspicious. It may be true that your genotyping data is of no greater interest for your employer, your insurance company or the government right now, but this can easily change (Remember: One of the reasons to upload your data here in the first place is, to enable everyone to find such new associations).

Think of the hypothetical SNP rs666. One day after you upload your genotyping-data to this website, a new publication finds that your genotype at rs666 will give you, your siblings and your parents a fatal disease that will most certainly strike all of you. Due to this disease you (and you kin) may lose your jobs and your insurance. Chances for a association of this kind may be small, but by uploading the data you are nonetheless taking this risk!

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What is personal genomics?

Wikipedia calls it as

"Personal genomics is the branch of genomics concerned with the sequencing and analysis of the genome of an individual. The genotyping stage employs different techniques, including single-nucleotide polymorphism (SNP) analysis chips (typically 0.02% of the genome), or partial or full genome sequencing. Once the genotypes are known, the individual's genotype can be compared with the published literature to determine likelihood of trait expression and disease risk."

the irony of the matter is that no one man is an island. 

The allure of personal genomics is invariably the ability to use something like a tricorder or minION to collect data about your personal genome and suggest an action for you, specific to your genome, so that you may act on the full potential of your GATTACA. 

you might have been told how special you are. One in a billion. To make sense of what your genes are saying, you actually need to find rare individuals in sufficient quantities to make a statistical inference that the bunch of you who share this variant in your DNA that predisposes you to a XX% risk of being an XX person. 

the (100% - XX% ) chance of you being otherwise is often not explained well enough. Where would you find this missing variability? 

There's epigenetics which i would argue is more PERSONAL genomics than the PG offerings out there. These variations account for the environmental impact that is quantifiable by genetic testing. Most tests are research use only I presume. 
There's structural variations which potentially affects the genome more than SNPs, and trying to predict the phenotypic effects of SVs will probably plague the next generation of bioinformaticians and geneticists.
There's also the rare variants which may explain the missing heritability 
Then there's the very intimate microbiome which consists of microbes that may hold an entirely different genome from you but affects your health in such a strong way that I think personal genomics should include this category.

 So while cheaper sequencing technologies has enabled projects like The Personal Genome Project (PGP) or deCODEme.com there's still a lot more to YOU than what your genes say about you through SNPs. 

That said, I am happy to genotype my SNPs with 23andMe kits or a kit from Xcode Life Sciences  to make an informed decision on maximising my exercise potential (and minimising the harm), but I need to be mindful to not ignore there's stuff that I may not carry personally but can make me into a roadkill statistic (1 in the 6426 ) or suffer an heart attack as a result of a stupid co-worker ... 

Live long and prosper , don't sweat the small stuff. (unless they are rare and have a combinatorial effect greater than its sum)

What 5G mobile networks portends for the future of personal genomics

ok I saw this a while back (a month ago, yes I have been busy) http://www.engadget.com/2014/10/14/samsung-5g-network-tests-oh-god-the-speed/

I am already very impressed with 4G (LTE) speeds but with 5G you can possibly achieve 150 mb/s to 940 mb/s which is mind blowing ...

Considering that you could then possibly upload via your mobile devices, your own 100 Gb bam file in about 10 seconds (sorry I wasn't thinking how much faster a youtube video would stream). Now Google is saying that they can store your genome (actually they meant your 30x WGS bam file) for $25 a year. But with 5G speeds, why would I even bother with that?

Heck, maybe in the future with an USB OTG cable connected to Oxford Nanopore's MinION your android phone will be able to sequence and upload in realtime your DNA obtained from a buccal swab. The cloud will have the fastq reads aligned and call variants instantaneously and download the 100 Gb bam to your microsd card.

Possible applications:

1. Maybe in the future other than asking if you have a drug allergy, pharmacists will request to 'scan' your DNA for the most efficient drug. 
2. another possible application might be having your DNA be your own personal identity card, 
3. more routine sequencing of the human microbiome to monitor your health in relation to the gut microflora or other sites.

I am keen to find out what you think you can do if you could carry your whole genome sequencing with you and upload via mobile networks. Drop in your comments please!

I can imagine personal genomes being shipped in these : SanDisk(R) Memory Vault

Chanced upon this SSD with an interesting feature that states that it can support data retention up to 100 years. Perhaps in the future, we might get our genome sequences saved in one of this.(two just for redundancy). You might be sequenced at birth and this info is used for all your medical consultations to receive personalized medicine / consultation throughout your lifetime ...


http://www.sandisk.com/products/memory-vault/sandisk-memory-vault


Introducing the SanDisk Memory Vault, the first product from SanDisk engineered to preserve your most important photos, videos, documents, and scanned files for generations to come.
SanDisk Memory Vault features Chronolock™ technology:

• Engineered to preserve the quality of photos and videos long term
• Tested to support data retention for up to 100 years*
• Physically designed for long-term reliability and durability

Preserve your life's most cherished moments with the SanDisk Memory Vault.


For the details on the testing methods ...
http://www.sandisk.com/misc/preserve

Data Retention Test Methodology

In order substantiate show how SanDisk Memory Vault technology can support 100 year data retention, accelerated temperature cycling and the Arrhenius acceleration factor was used to simulate the effects to data retention over long durations of memory usage.
The Arrhenius equation expresses the relationship between the rate constant (or acceleration factor) and the activation energy and temperature of a reaction.

Figure 1. Arrhenius Equation

EXAMPLE: The following example is for illustrative purposes only. Actual figures used to validate data retention properties meet and or exceed standard product usage parameters. In this example, the test calculation the following temperatures and activation energies were used:

1. Ea = Activation Energy = 1.0 ev
2. Boltzmann Constant = 8.62*10^-5
3. Product application temperature used for this test (Ta) = 35ºC
4. Product test temperature used for this test (Tt) = 125ºC
5. Product's time-to-failure is exponential

kevin:Not affliated with them but won't mind a tester unit from them!

Ion torrent and DNAstar partnership

Ion Torrent to Provide Assembly and Analysis Solutions from DNAStar http://www.genengnews.com/gen-news-highlights/ion-torrent-to-provide-assembly-and-analysis-solutions-from-dnastar/81244638/


Working with commercial software providers appear to be Life Tech's direction. Earlier they announced a partnership with Partek. I think it is a good move since coming up with an inhouse software that works is not enough. There has to be more reasons for using one over another. Unless Life Tech is moving into providing it's own software solutions commercially, it is not cost effective to have a software development team working on solutions. ( unless of course if u r trying to use free software to close the gap between competitors. ) NGS has spawned a demand for bioinfo jobs and software to tackle the deluge of data. With new sequencers and new file formats I think the scene will be still have more vibrant yet confusing times to come.

The $1,000 Genome Debate is 'Already ... Irrelevant'

excerpted from GenomeWeb
Matthew Herper and Daniel MacArthur are at odds over the $1,000 genome. Forbes' Herper argues that even though sequencing is becoming cheaper, analyzing a genome still costs much more than $1,000. Over at Genetic Future, MacArthur responds that as sequencing costs continue to fall, "a substantial niche will develop for innovators providing affordable, intuitive, accurate interpretation tools." 

My thoughts on this later.. 

12 Geneticists unzip their genomes in full public view

A GROUP of 12 genetics experts will expose their DNA to public view today to challenge the common view that such information is so private and sensitive that it should not be widely shared. 

The "DNA dozen" will publish full results of their own genetic tests, including implications for their health, in a controversial initiative to explain the significance of the human genome for medicine and society.
The Genomes Unzipped project aims to demystify the genetic code, showing what it can and cannot reveal about individuals' health and allaying fears about discrimination and privacy.
The participants - 11 British-based scientists and an American genetics lawyer - hope to encourage many more people to share details of their genomes with researchers. This would allow the creation of open-access DNA databases that any scientist could use, enabling a "wisdom of crowds" approach to research that will accelerate discoveries about genetics and health.

What's your BRCA status? Personal Genomics testing.

Do-it-yourself genetic testing
   How to test your BRCA status and why we need to prepare for the personal genomics age.
Genome Biology 2010, 11:404

Interesting read covering issues on personal genomics. Did you know that “the BRCA gene patents, which are held by Myriad Genetics, cover all known cancer-causing mutations in addition to those that might be discovered in the future.” How did that one slip through the patent office?? Not that it really matters “Currently Myriad charges more than $3000 for its tests on the BRCA genes, while sequencing one's entire genome now costs less than $20,000. Furthermore, once an individual's genome has been sequenced, it becomes a resource that can be re-tested as new disease-causing mutations are discovered. “


“Regardless of how easy it might be to test for mutations, the restrictive nature of the BRCA gene patents means that anyone wishing to examine any mutation in BRCA1 or BRCA2 will have to obtain permission from the patent holder Myriad Genetics. This restriction applies even if testing your own genome. If you wanted to look at other genes, you would have to pay license fees for any of them that were protected by patents. In practice, although it may seem absurd, this means that before scanning your own genome sequence, you might be required by law to pay thousands of license fees to multiple patent holders. “


This is complete hogwash! ( the concept that I have to pay genome-squatters (see cybersquatters) in the human genome, I would much rather pay for real estate on the moon! )



related posts
US clinics quietly embrace whole-genome sequencing @ Nature News
Commentary on Personal Genomics testing

Commentary on Personal Genomics testing

I was reading the usual "say no to personal genetics tests" blog post

 The Empty (and Misleading) Promises of Do-It-Yourself Genetic Tests

I shall go out on a limb here and declare up front, I am ambivalent about personal genetic tests. In addition, I am wholly against unscrupulous consumerism that overpromises (which might be genetic tests for factors that can't possibly be done now with our current scientific knowledge e.g. intelligence testing, for a list of good examples you may refer to "Some of the 40 behavioral genes that are tested  here." There are a few of the behavioural genes which I believe are bona fide but 'self detoxification' has to be a joke, I hope)

That being said, I would like to offer the flipside of the story. 

The term 'increased risk' is contentious. If you recall the "Toyota Recall" fiasco, did you manage to get any numbers on the increased risk of driving one of the affected cars? The difference is 0.00028 percent according to this page. 

Would that stop you from not sending your car in?

Of course not, and I am not urging you to stop as well. 

But the point is not wholly about the increased risk, but rather your right to know the risks that you are taking. Knowledge is a double edged sword, I recall a friend being tormented by her positive results for early Down's Syndrome screening for her unborn child. Only the negative results from her amniotic fluid test set her mind at rest. Yet I believe no one would ask that the results of the first test be kept private from a patient to prevent undue worry. And I am sure the doctor explained the test fully. But it is only natural for my friend to be worried. 

I do agree with Taralyn, without a healthcare professional explaining the results of the test, the potential for abuse and fear mongering is there. However, she should expect the average consumer who chooses a genetic test, is not an average consumer. He or she is likely an educated consumer, who has an idea of what the test portends or has a known family history of cancer / genetic disease and wishes to have the knowledge to better manage his/her lifestyle.

And to Taralyn, I would like to answer with a "YES" to your question of "Will I ever be able to air-mail a swab of my saliva for my genetic read-out?" Not because you should but you can if you so choose to. This is because the technology is here.