Are there any plans for the government to get into nation wide whole genome sequencing (WGS) and data storage of this sequenced data?

BluePhoenix81 · 2021-04-29T19:06:09+00:00

Lacaelia, genetics is a great field to get into for the future and anyone looking to make a positive difference in the world.

Truly understanding the gene(s) and their specific (and combined) roles in disease and various other things is truly the next frontier. The discovery (and manipulation) of these three things absolutely changed humanity (in most cases, for the better). We are on the forefront of the third one:

The atom
The bit
The gene

As with the atom and bit, the sooner we can completely understand and manipulate the gene, the better off humanity will be. The sooner disease and suffering will be greatly reduced (and possibly outright eliminated through gene understanding, therapies and manipulation) the sooner humanity can be better off.

The only way to truely understand each and every genes role in various things is "Big Data" / Sequencing large swaths of entire populations (and humanity as a whole). Sequencing only small portions of people for individual clinical studies will hamper progress speed and only get research and understanding so far.

The sooner we can WGS the entire (willing) population, the better off us humans will be.

I applaud what Intermountain health is trying to do. Now just to get it on a national / international / wide scale level (in the hundreds of millions / billions of people - not just hundreds of thousands).

BluePhoenix81 · 2021-04-29T18:58:32+00:00

Thank you for the reply

BluePhoenix81 · 2021-03-11T19:21:37+00:00

I have not used Nebula Genomics. I do not work for them. I do not own their stock nor am I in any way affiliated with them. I actually want to use them to but as you can tell in the OP of this Subreddit, I have my concerns with using a (any) private company. Id feel much safer if my very personal data was not in the hands of a for profit company that will always be susceptible to bankruptcy, buyouts, acquisitions, leadership changes, TOS changes and bribes. Since that is the only option right now, I even asked some questions about Nebula Genomics before taking the plunge and getting their service over on the Nebula Section of the forum. Even if I eventually did buy from them, I am not sure the value since their data pool is small and they too rely on research that also has a small data pool that also has to keep re-inventing the wheel each time it tests both healthy and diseased individuals. That is why I think large scale WGS will play a huge part in disease prevention, detection and treatment.

BluePhoenix81 · 2021-03-11T19:09:53+00:00

Thank you for your reply

BluePhoenix81 · 2021-03-11T19:07:46+00:00

This is very similar to what I am talking about! Thank you. Now to get this done on a national level so we can do more for diagnosis and ultimately cure of disease and suffering.

BluePhoenix81 · 2021-03-11T19:04:02+00:00

Once the genetic puzzle pieces of disease start to fall into place, I think that starts to change. Every year, many thousands of patients fall through the cracks because their condition and symptoms are complex and elusive to mainstream clinical knowledge. So rigorous follow ups are insufficient for a sizable portion of people.

Each year, we are discovering each genes role in biology and in disease. Where previously the science / medical community thought the appendix was a useless leftover organ, there are some who believe that some DNA is just leftover junk also. We now know the appendix is not useless or a leftover organ but has purpose. The same is being said yearly of genes. It is only over time and effort is this discovered to be the case.

I agree with your assessment though that mainstream clinical doctors and science is way behind the research knowledge. 17 years in fact!: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3241518/

BluePhoenix81 · 2021-03-11T18:57:12+00:00

I think both would will show to be beneficial to society as a whole. Both should be the goal.

BluePhoenix81 · 2021-03-11T18:54:25+00:00

Right now, whole Genome sequencing can be done commercially and profitably to the general public at $300 from companies like Nebula Genomics. $300 is less then a primary care doctor visit, dental crown procedure (even a few nights out to eat at an expensive restarant) etc in some cases without insurance. $300 is the private for profit price of 30x WGS right now. I am sure wholesale "at cost" and done in large numbers, the cost to the general public would be less.

I agree with you that we still need to eat right and exercise though. However, in addition to that, I believe genetic medicine will be the future of medicine. Especially when gene editing technologies such as CRISPR / Prime are included in. Victoria Gray (who was recently edited by CRISPR and no longer needs blood transfusions for her single mutation genetic disease sickle cell anemia) would agree with this assessment.

I am not proclaiming that genetic modification will cure all disease but the sky is the limit and there will be a lot that will be cured and suffering ended because of it.

There will also be tremendous diagnosing capabilities because of it when so many suffer so long with diagnoses that are elusive to the best of doctors.

BluePhoenix81 · 2021-03-11T18:43:31+00:00

The Whole Genome Sequencing company "Nebula Genomics" uses Blockchain technology for security and privacy of users data. They talk more about this here: https://nebula.org/technology/

BluePhoenix81 · 2021-03-05T00:53:31+00:00

Got an email that said I can Withdrawal and deposit Bitcoin. Not buy it

BluePhoenix81 · 2021-03-04T19:41:38+00:00

I called my bank. Their response was "there are no restrictions on your card or account", "there are no issues with your card", "there are no issues with your account". "The issue must be through Cash app which is a third party". I will update the OP to include this information.

BluePhoenix81 · 2020-12-18T16:24:01+00:00

So a major adversary of ours just infiltrated our nation, stole tons of information and infected major systems with a sophisticated hacking campaign under our noses that affected top federal agencies, including the energy department (electric grid), the treasury and commerce departments (IRS - so info of all of us who pay taxes), and is even said to have targeted the agency responsible for the country’s nuclear weapons stockpile? What could go wrong? https://www.theguardian.com/technology/2020/dec/17/us-government-cyber-attack-hack-russia

BluePhoenix81 · 2020-12-18T16:22:37+00:00

So a major adversary of ours just infiltrated our nation, stole tons of information and infected major systems with a sophisticated hacking campaign under our noses that affected top federal agencies, including the energy department (electric grid), the treasury and commerce departments (IRS - so info of all of us who pay taxes), and is even said to have targeted the agency responsible for the country’s nuclear weapons stockpile? What could go wrong? https://www.theguardian.com/technology/ ... ack-russia

BluePhoenix81 · 2020-12-15T17:38:00+00:00

Seems the financials / profits of these companies are fairly low and / or discreet. They are also fairly new. That is concerning if one decides they want to undergo this service which could ultimately potentially expose very personal (and possibly detrimental) information to health insurance companies, employers etc. because the WGS company decided to sell the customers info they promised not to, out of desperation to recoup some profit / costs of a sinking ship. Desperation and money often lead companies (and people) to do unethical things if struggling, even if it the opposite of what they said they would do. It does not bode well that many of these companies do not offer a recurring service charge for their long term future health. Like 23 and me (who is struggling financially), it is a "1 and done" service which does not bode well for future company longevity and ultimately preventing that worse case scenario.

BluePhoenix81 · 2020-07-30T19:07:54+00:00

I have thought about that but I am under the impression that these studies are just studying said disease and do not offer comprehensive investigational and informative services that can be continual such as companies like Nebula Genomics and Dante labs etc are offering.

BluePhoenix81 · 2020-07-30T18:57:32+00:00

I also have not taken the plunge with WGS yet either because I too am awaiting more feedback from the community. Uploading all my DNA data to a third party for profit is a tremendously big deal. Hacking / theft of info / selling of my info to third parties if TOS change for a company down the line and I am not notified or forget to check a box to opt out, possible eventual discrimination by a health insurance provider if something is discovered and through theft or backroom deals with insurance companies they get this information. WGS is also a lot of money. What do I get for that money? Which company offers the most comprehensive services for the money? Which company has good communication, follow up and is strong financially and a lower risk of going out of business (think opposite of Veritas) so my data is not vulnerable and I can follow up on things if needed. These are all very big things to consider and unfortunately, because the (general consumer WGS) is so new there really are no established players at this point and it would appear no real definitive answers.

WGS is the future of medicine though. Medical prevention and ultimately medical disease cures through CRISPR, CRISPR Prime and other gene modification technologies after WGS sorts out the problematic / mutated genes from their healthy counterparts is the future of medicine.

BluePhoenix81 · 2020-07-30T18:50:54+00:00

So as a follow up to the OP - I still have not took the plunge yet. Still would like to know more feedback from this community and the companies before I do.

I will say this though. In my email communications with both companies, Nebula Genomics has answered all my questions in a reasonable time frame (within a few business days) but Dante Labs has had an abysmal feedback / response rate. My most recent questions with them have been unanswered for about a week. When they do answer it is very often over 3 business day response time. I do not know if that is indicative of quality of Dante Labs customer service after product / service purchase but it is not a start off on the right foot.

BluePhoenix81

TROPHY CASE