DNA Sequencing for Health?

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This week we get to unlock the mysteries of our DNA as we talk to Dahlia Adyaking , who's the trailblazing CEO of a company called Panacea . She guides us through the labyrinth of all the different types of genetic testing .

She elucidates the stark contrast between sort of the snapshot analysis that consumer-grade genotyping allows and then the more in-depth exploration of clinical-grade gene sequencing , and we'll talk about what those differences are . With Dahlia's expertise . We navigate technological marvels behind next-generation sequencing .

We dissect the nuances of whole exome versus whole genome sequencing . This episode is a treasure trove for those seeking to understand how a deeper knowledge of our genetic makeup can lead to a better understanding of disease prevention and personalized health management strategies .

We dive into the profound implications of genetic testing on privacy and empowerment with a company that stands at the forefront of safeguarding your genetic secrets . Dahlia tells us how her company , panacea , champions consumer consent and leverages blockchain technology to protect and empower individuals with their genetic data .

This is so important and always look at this , whichever company you're going to be using , keep this in mind . Moreover , we tackle the often overlooked influence of lifestyle choices on genetic health risks and the power that comes from early detection and personalized intervention .

So genes are important , but , of course , our lifestyle is what turns on the genes and activates them , so they're all playing an important role . So , whether you're intrigued by the promise of clinical grade genetic insights or concerned about the sanctity of your DNA's privacy , hopefully this conversation is an enlightening journey into the frontier of genetic healthcare .

This episode is brought to you by El Nutra , maker of the Prolonged Fasting Mimicking Diet . If you'd like to try it , use the link in the show notes for 20% off . And now please enjoy this week's episode . Hey , dahlia , welcome to the episode .

Everyone's familiar with 23andMe and Ancestrycom sort of low-cost tests , and maybe you could distinguish those compared to other types of tests that are available .

The very common type of genetic test that we see through a lot of direct-to-consumer companies is not really clinical-grade testing , is not really clinical grade testing , and the reason it's not clinical grade testing is because it uses a technology called microarray that sort of looks at your genes in a very surface level manner , right ?

Microarray is essentially a search and find technology . It looks for a predetermined variation that could exist in your genetic makeup or in the particular gene of interest , and if the particular sequence or the particular arrangement of the gene is not there , then essentially a patient might test negative for that particular change .

The problem with microarray and with this type of surface level testing is that it's not really finding what it's not looking for , and it's usually looking for very limited things , and so when you get a test through one of the common direct-to-consumer companies , you're usually getting a limited kind of surface-level view of your genetics .

So it's not really clinical because it lacks that depth and breadth of information . The second league of testing is really clinical testing . It's testing that your doctor would do . It has to be ordered by doctor , essentially , and it has to be provided by a clinical laboratory .

This type of testing centers around a technology called next-gen sequencing , and next-gen sequencing is the literal reading of every letter of your genetic alphabet . It's very comparable to me saying , hey , doc , read me this paragraph , but don't read me every word in the paragraph .

Read me every letter of every word in the paragraph so you can see how thorough and deep it is , especially when you compare it to a search and find technology . That's literally looking for one word in a paragraph and if it's found , great , it's highlighted . If it's not found , then you have no idea what the paragraph's saying right .

And so , when it comes to understanding the differences between genetic testing , I think consumers really need to understand those two core differences the depth and breadth of information , excuse me , that's provided by the different technologies and that's kind of the high-level overview on the differences of genetic testing available today .

But what you're saying is , because of the way the technology is set up , unless you have a detector for a particular SNP , if you don't look for it , you won't find it . Essentially , Precisely . If you don't look for it , you won't find it .

Essentially Precisely Versus this new , more advanced testing where we're not using microarray but we're actually sequence , I think the consumer one's called genotyping in many ways right , and this is called gene sequencing , right .

The whole exome sequencing is quite similar , except it's more focused on just your genes .

Now people kind of look at me like I have four heads when I say this , because sometimes they don't realize that there's a lot more information held in your genome than just genes , right , there's genetic material that exists between the genes that in whole exome sequencing is not really looked at right .

We only look at the genes , the areas of your genome that code for proteins and essentially give your body instructions . The reason why that is so valuable is because the vast majority of genetic changes that are understood today that affect health and disease , occur because of variations or mutations in the gene areas in the exome , essentially right .

So you're really sequencing a more focused area of the genome that really has the most valuable information . It's a lot more cost effective to do that because of course you're not sequencing everything , you're sequencing all the areas of interest and it actually yields a lot less information . That is unuseful .

Right , because there's going to be so much information that's delivered through the whole genome . But the problem is a lot of it is just not useful . We don't understand it , we can't interpret it , we don't know what it does .

And so if we limit our focus just to the genes , the areas that code for information , for biological instruction , then we get a lot more useful data and a lot more cost-effective data .

But this whole exome sequencing is a clinically great way of looking specifically at the genetic material , and it's more cost effective than doing whole genome sequencing , where you include a lot of unnecessary material . So it's a more affordable way to get clinically actionable results .

clinically actionable results .

The difference when you're doing a next-gen sequencing , with either a very large panel of genes or all of the genes in the exome example and whole exome sequencing , you're really reviewing every single well understood gene when it comes to health and disease risk , essentially .

So the areas that we understand today in genetics are centered around oncology , so gene changes that could influence your risk for developing cancer . Cardiology is also a growing space in genetics Neurological issues and rare diseases . Those categories , those bulk categories , are really where genetics and genetic testing is useful today .

Categories are really where genetics and genetic testing is useful today and , as you might know , the areas of genetics that we are sort of beginning to understand more and more are the areas of single gene changes , right .

So we understand how a change in one gene or a few changes in one gene can affect our development for disease or our susceptibility to develop diseases the areas that genetics still hasn't really delved into , and likely will in the future , are the areas of changes in multiple genes . So a lot of diseases are likely caused by changes in multiple genes .

Diabetes , for example , is a complex disease that likely occurs because of changes in multiple genes . Autoimmune diseases are likely caused by changes in multiple genes . We haven't quite narrowed that area down yet . We're still kind of unraveling the complexities of all of that .

But today the areas where genetics and genetic testing is really helpful is in understanding and identifying those changes that occur in one single gene . And , like I said , oncology , cardiology , some neurological disorders and rare diseases all occur from those single gene changes .

Now , is it correct to say that whole exome sequencing because it sequences the entire exome will be in a better position to identify polygenetic influences than , let's say , a microarray system like genotyping with the consumer-grade ones , which only identifies certain SNPs . It might miss some of those relationships .

And so when you have a test like whole exome sequencing and you're essentially looking at the entire genetic library , you can certainly begin to pick up on trends and patterns that might exist among all of your genes .

And the really interesting thing is that whole exome sequencing is not just valuable to you today , it is essentially valuable to you for the rest of your life . And the reason for that is your exome doesn't change . Your exome is essentially the genetic combination that you inherited from mom and dad and that is never going to change .

You will have the same exact combination for the rest of your life . And so sequencing all of your genes in one shot , in one test , just once in your life , is really , really valuable for you today and for the rest of your life . You can continually make comparisons of new developments and new discoveries against your exome .

So you only need to get your exome sequenced once and you'll have that and you'll be able to reference it against any new developments , over and , over and over again for the rest of your life . That's why it's so valuable to sequence your exome , as opposed to just pieces of your genes , and really have that be useful to you forever and ever .

Yeah , so Prometheus is one of the databases that we often see and we do recommend , and we do recommend we have no affiliation with them , but they're certainly one of those databases that does accept raw data , especially whole exome or whole genome sequencing data , and that data can essentially be utilized to create reports for yourself , and that's a great way to

kind of stay up to date with all of those new discoveries that might be relevant to you .

The consumer-oriented genotyping ones we talked about I can just order on Amazon or something , but the clinical level ones , like whole exome sequencing that you provide , require a doctor's prescription .

What is it about the information that exome sequencing provides that I need a doctor to hold my hand , whereas if I get it from you know one of the consumer vendors , I don't , or what , what ? How does that ? What's the difference there ? You know one of the consumer vendors ?

The problem is that insurance companies are not very widely covering this type of test , unfortunately , and doctors are sometimes hesitant to order a test for their patients that they know insurance is not going to cover .

The other issue is ironically , not all physicians are very well versed and trained on how to utilize genetics in the care of their patients , and so sometimes they shy away from ordering this type of test . It can be complex , and interpreting what the results mean is also a complex thing .

This is exactly why Panacea provides a free session with a clinical genetic counselor , so that this information can be deciphered and next steps can be identified , so you can kind of use this information to make healthcare decisions for yourself with your doctors .

Moving forward , I think , to answer your question , one of the reasons why this test needs to be ordered by a physician is because it can actually guide medical decisions .

If you are an individual that has an increased risk for breast cancer , for example , or ovarian cancer or colon cancer , there are specific actions that can be taken to minimize and , in some cases , completely eliminate your risk , and those decisions really need to be guided by a medical expert , which is why these tests are clinical and they do require the order of

physicians . And , of course , at Panacea we handle all of that for you . We have physicians that we partner and collaborate with that will order these tests for you .

We have genetic counselors , as I already explained , that will interpret these results so that you can understand what to do with them , and then you can take all of this information to your physician and sort of create a very specific healthcare plan so that you and your physicians can really be in control of your health and get ahead of the risks that are carried

in your genes . Does that answer your question ?

Now , talking about data privacy , like I get all this information , that's me my whole life . It's not going to change my whole life . Maybe I don't want to share it with my physician and maybe I don't want to share it with my insurance company . I remember back when Chino Typing the consumer ones came out a friend of mine , you know .

I was discussing this with a friend and he said well , if you send in your information for your consumer grade genotyping , be sure and use a fake name , you know , because you don't want it tied to your real name . And somebody pointed out that it's sort of like sending in your photograph with a fake name . The photograph is identifiable .

The gene , the genetic material , is more identifiable than your name . They'll be able to track your ancestors and you know , and all your relatives and everything as well . What do you think about data privacy and what's going on here ? What do we need to do ?

There's a couple things that I think should really be highlighted when it comes to data privacy genetic data privacy . Number one there is a law called GINA , and GINA is the Genetic Information Non-Discrimination Act .

Gina is a federal law that protects individuals from being discriminated against because of their particular genetic makeup , and what that means is an insurer cannot hike up their rates or discriminate against you for any reason that pertains to your genetic makeup , so you are protected in that regard . Okay , gina does not apply to life insurance in every state .

There are some states that do apply GINA to life insurance and some states that don't , so it's important to know what state , if your state in particular , uses GINA for life insurance . But those are regulations that are here to protect you .

Now , beyond GINA and beyond HIPAA , of course , and beyond just the standard healthcare privacy laws , when it comes to genetic information , there really aren't a tremendous amount of regulations that protect you , and the courts in the United States essentially have deemed genetic information that leaves your body in the form of tissue as not yours anymore , and so the

companies in this country , as long as they abide by HIPAA and they abide by GINA and they abide by the laws that are here right , they can kind of do whatever they want with your genetic information .

Now , the important thing to do as the consumer is to know the corporate policy of the company you're working with , for example , panacea . Myself and my founding team believe that your genetic information is not our genetic information , it is your genetic information , which is why we do not do anything with your genetic information that you do not allow us to do .

That includes sharing it , it includes monetizing it , it includes donating it to research or sharing it with researchers or pharma . We do not fiddle with your genetic information unless you want us to , and that is our corporate policy .

That is not the corporate policy of almost every other genetic company , because genetic data can be very lucrative , it can be very easily monetizable , and so we believe that the right thing to do is to get the permission and the agreement of the person who owns that data , which is you .

That's how I would hope my genetic data is dealt with and that's why we have that stance as a corporation . We do not do what all the other companies like to do with genetic information . It's just not part of our philosophy .

I won't mention their name 23andMe but they had a policy that you know the data will never be resold , never be available . But now the company is being resold and whoever buys the company doesn't have to abide by the previous corporate rules and they will buy that data .

So I mean , it's just , you know , it's a cautionary tale that even and I applaud , I applaud your company for taking that position and taking a stand , but you know , quite honestly , it's only a boardroom vote away from changing the policy . You know how it is .

But I do encourage you to sort of explore the companies that sort of are willing to take a stance against this unfair and unjust sharing and monetization of data , against the user's will .

There's a lot of companies that are actually using blockchain technology to give the user complete control over their data , so they can actually remove their data from the databases of a lot of these companies themselves , and so the autonomy and the control and transparency is certainly growing , especially with companies that sort of believe that this information does not

belong to the company , it belongs to the user .

Because , I mean , famously , there's an actor who on a longevity tv show , had his I think it was genotyping , but anyway he was found to have APOE4 bilateral alleles , which is a risk factor for Alzheimer's and cardiovascular disease , and he was devastated .

But the the message is a lot of the diseases certainly not all of them , but a lot of the diseases that we could pick up risk factors for are influenced by lifestyle , and even Alzheimer's disease , as we've talked about in this program , and cardiovascular disease is dramatically affected by choices we make in the lifestyle .

And all these diseases arise years to decades before the doctor will ever diagnose them . So the sooner you know about your risk , the sooner you can begin implementing these changes in your life that , downstream , may delay or even , you know , prevent you getting these diseases if we push it back far enough .

So I'm certainly the philosophy I want to look under the hood , I want to know it's there and I think that's , given the breakthroughs that are happening in medicine today , that's a much , much better way to look than just saying , hey , I don't want to know . Surprise me .

I'm actually a primary example . I had my exome sequenced through my company and I found out that I have a genetic risk that makes me nine times more likely to develop ovarian cancer than the average woman . The irony to this is I would never have qualified for genetic testing through our healthcare system today Never .

I don't have a family history of ovarian cancer . I don't have a personal history of ovarian cancer or related disease , and so I would have never known this information information I can get ahead of it . I can essentially team up with my physicians which is something I've already done to talk about what my options are . Can I do more frequent screenings ?

Can I take certain medications ? Are there potentially preventative surgeries that that I can have in order to reduce my risks ?

And so all of this information was is given to me and now within my control and within my grasp , simply because I received a genetic test through panacea that I never would have gotten anyhow , and so now I'm the one in control of my genetic destiny , not the reverse , and that is the case with a lot of people who do find risks in their genetic tests .

So this is really meant to be empowering , not meant to be scary or to give you , you know , a written in stone death sentence . None of this stuff is really written in stone . It's a risk assessment , and so you certainly can change your behaviors in order to hopefully minimize your risk .

Our partner physicians will review your forms and will essentially order it for you , pending , of course , there's no glaring contraindication to getting this test , and so we make that barrier almost non-existent , and so all you need to do is essentially go to our site you can use a credit card or HSA or FSA even to purchase a test and you fill out a form .

Our doctors review the form , our forms get sent to our laboratory . Of course , once they're authorized by partner physicians , our labs will send you a kit directly to your home .

It's so simple , as Dr Lufkin just showed , it's just a cheek swab and you swab your cheek , you send it in a prepaid envelope back to our partner labs and within 21 business days , your whole exome will be sequenced and you should receive a report from our team . Many people will receive a completely empty report , which is the most beautiful thing .

That's exactly what everyone would hope to see . You want to not have any known risks today , and so , just as much as you're purchasing information on your genes , you're also purchasing peace of mind in those particular cases , because it really means that you just don't have any high risk genes that are identified , and that's a wonderful , wonderful thing .

Once you get your report , you can also sit down with our genetic counseling partners for an hour to look over your report and understand what your report means and what it doesn't mean . No matter what results you have , even if your report is completely empty , it's really important to sit with a genetic counselor to understand what that means .

Does it mean that you're never going to get cancer or neurological issues or anything else ? What does it really mean for you ? And so all of that , that entire experience , is what Panacea delivers , and it is the true comprehensive A to Z experience In healthcare .

In today's healthcare , this experience that will take you just a few weeks from beginning to end could take you months , and that's if you even are able to ever get it , and you're certainly not going to get it covered by your insurance company in most cases . And so we sort of address these barriers in a very simple , user-friendly workflow .

Right , there are error rates , of course , just like with any test , but because the technology is so advanced and there's so many redundant technologies that go back and take a look at the results that come off of these machines and resequence certain pieces that maybe were not sequenced very well , the error rates are so , so low .

So false positives and false negatives incredibly low . So , again , risk there is quite low . The risk , I think , that might be the highest for this type of test is the psychological and emotional burden that could come with this type of test .

And so not every candidate is or not every individual is a great candidate for this type of test , because if you are the type of individual that is going to be more overwhelmed and more stressed and feel more burdened with this information , even if you can do something about this information , this might not be the test for you .

But if you are the type of individual who feels empowered and more in control of your health by having this type of information , then you're a great candidate for this , and so we always mention the fact that not everybody is going to do well with this test and do well with the information that comes off of this test .

Most people will , but not everybody , and so you sort of have to consider that about yourself . Is this information going to empower me and make me feel in control , or is this information going to make me feel worse ? It's a good question to ask yourself .

I'd love to offer your audience a 20% discount so they can use . I'll send you the discount code doc so you can put it in your show notes . All of your listeners can purchase the Panacea test at 20% off , which saves you about $200 . And , of course , if there are any questions , you can always go to our website , reach out to us on our contact form .

You can email us at contact at ZekeFantasiacom as well . If you have any questions . We're happy to help , but we would love for everybody to follow us on Instagram .

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