>> From WXXI News.

This is Connections.

I'm Evan Dawson.

Our connection this hour was made with a local woman named Sherry.

Sherry, like many people, takes medication for high cholesterol.

She began taking the medicine after learning she was genetically predisposed to high cholesterol, something she learned from a genetic test.

And when you hear about genetic testing, you may think about the cost factor.

Personally, my only experience with it is that when a family member was offered it after a cancer diagnosis and later received a bill for $1,000, in Sherry's case, the testing was free.

It also came with a meeting with a genetic counselor.

She told me what I should do, Sherry said.

It was all so easy and I think everybody should go get it done.

Sherry's father had died from a heart attack at the age of 62, and now, armed with the information about her family's history and her own personal risk, Sherry was able to get ahead of her own possible health issues.

So what could your DNA reveal about your future health?

And would you want to know it?

That's the first question you're going to see when you visit the website for the GenoWell genetics program.

The program that Sherry was a part of, it's a new no cost service offered through Rochester Regional Health.

And as reported by our colleague Racquel Stephen, it can help participants identify if they are at risk for certain cancers and heart conditions.

So what would you do if you learned you were at risk for cancer or heart disease?

Well, the question leads to conversations about what's often called the Angelina Jolie effect.

When the actress lost multiple family members to breast and ovarian cancer, genetic testing revealed that Jolie had an 87% risk of developing breast cancer and a 50% risk of developing ovarian cancer because she carries a gene tied to those cancers, she opted for a preventative bilateral mastectomy and reconstruction.

The so-called Angelina Jolie effect refers to the increased awareness that she has brought to hereditary cancers.

Leaders of the program here say it's all about empowerment, and people who participate can help pave the way for more personalized care for everyone.

So again, what would you do with more information about your health?

Would you want to be told?

A lot of people say, yes, and we're going to talk about that with our guests.

And I want to thank Racquel Stephen, my colleague who's here here with us for part of the our health equity and community reporter and producer at WXXI News, always bringing great stories to us.

>> Thank you.

Evan.

>> Welcome back here to the studio.

>> It's been a long time.

Right.

I should.

>> You should just grab this host mic and I'll come back in an hour.

>> I think they plan on doing that, so we'll see.

>> No, I know you've got a very busy.

>> Day, so.

>> Rachel will be here for part of the hour.

Let me welcome Dr.

Prad Phatak, who's medical director of precision Precision medicine for Rochester Regional Health and principal investigator for.

I probably said it wrong.

He's a GenoWell GenoWell GenoWell GenoWell doctor, great to have you.

Thank you for being here.

And Heather Bacchetta is with us, director of Precision medicine for Rochester Regional Health.

Thank you for being with us as well.

>> Of course, it's a pleasure to be here.

>> So let me just start with you, Raquel.

Would you want to know if you could get information?

>> Yes, definitely.

This is free.

Definitely.

Why not?

You can be proactive.

and take the necessary steps so it doesn't get serious or you don't get it at all.

So why not?

>> Yeah.

I mean, I think in general most people would say yes, but although you're right that the cost could be a factor, and I think a lot of people associate these kind of conversations with genetic testing tied to things like breast cancer.

And they can remember getting that thousand dollar bill or questions about paying for it.

So that's one thing.

But then there's the psychology that just says, you know, would you make changes to your life?

And I think everybody should at least have the option if we can.

I think at least that's my perspective.

I can probably think of people in my family who would say, I don't want to know.

I like my life, I don't want to make changes, but I think it's nice to have the option.

>> Yeah, I'm a control freak, so that might be part of my answer as well.

Like, I want to know what's going on.

That's probably why I don't like flying, because I don't like the idea of someone.

Someone else's, someone else's hands.

so if I could take my life into my hands, I would take that opportunity.

>> So you'd rather drive than fly, right?

>> Yes.

>> Although, of course I could.

I could yell all day and say, Raquel, 40,000 deaths a year in American roads.

Flying is like the safest thing you could do.

But you would say, I'm not in control.

>> And I think about that on my way to the airport right?

I definitely do, and I feel like, you know, when I'm up, I have no problem being up there.

But when, you know, coming down, going up.

But I would take that opportunity because that's just my how my.

>> You want the control, you want the information.

Yes.

So let me ask our guests here about the mission of some of this.

And I'll start with Heather, and we'll ask Dr.

Patak as well.

do you think most people, if they could get it at a low cost or no cost option, would take information like this?

>> Oh, absolutely.

I mean, why not?

It helps empower you to learn more about your health, how DNA impacts your health, to take measures to have more preventative care.

it helps us learn about how to better diagnose and treat, treat different diseases, and also helps us learn because it is a community health research program, it helps us learn about how we can improve, how we how we do all those things, how we can help prevent disease, how we can treat it, and also diagnose it.

>> What do you think, Dr.

Patak?

>> Absolutely.

We should we should tell you a little bit about what GenoWell is.

>> Absolutely.

>> So it's multiple things.

It's it's a large research program.

So people will join this by signing a consent form.

they will part of the consent form says I agree to participate in the research associated with this project.

And then there are three layers to this.

So the first part is we will report the results of what are considered CDC tier one conditions.

These are conditions that we know we can make an impact on.

If they're found early.

The examples are like the ones you gave ones that make you prone to breast cancer and colon cancer.

And hypercholesterolemia.

But then the program is bigger than that.

Your DNA information is saved and can be queried in the future.

So if you're at risk for another genetic disorder, your provider decides to do a genetic test on you.

The information is already there because the DNA is already sequenced.

You can query that database, get the information, and then another large upcoming field, pharmacogenomics.

So the way you metabolize drugs depends on your genetic makeup.

So if I'm prescribing a drug that might be influenced by your genetics, I can query this database and see if you're one who's going to metabolize it differently.

So it's powerful, powerful database medicine of the future.

So and then there's a research component that I can tell you about.

>> Oh well I want to kind of go down all of those different threads here.

But just sort of in the overview, you know, Raquel, you have reported not just on health care, but on community perceptions, psychology of different communities.

And one of the first things that I can imagine people wondering when they hear Dr.

Pontac is, you know, do I feel safe with my information?

Am I going to trust it?

So, I mean, did that question come to mind for you?

I mean, I'm going to give our guests plenty of time to talk about this too.

But I mean, certainly.

Yeah.

As we head into the future, everybody's wondering, like, what do you do with my information?

>> I mean, this this topic gave conspiracy theorists a field day when we posted it on, on social media.

The the engagement and the the the comments were actually really focused on what you said.

Evan, everyone is concerned about where their DNA is going.

there's a lot of don't give your DNA.

it's just been.

Yeah, a topic that's that's brought everyone out.

>> And I want to say the reason I raised this is when you when we did post your work on this, I did notice that.

And I think it's it's important to put it out there early on here because for the lay public, you might have different ideas about what this means for privacy or future use.

Let's let the professionals tell us how you would address those concerns.

And yeah, go ahead, Heather, if you want to do that.

>> Sure.

So I'll comment that, of course, this is a research program.

It's a community health research program.

And that is a big differentiating factor for this.

So data is incredibly protected.

It goes through the whole program has to be reviewed and approved by an institutional review board.

this is a clinical program.

The data is stored in a secure and encrypted database.

It's de-identified for research use.

and, you know, staff have to have high, high amounts of training to, to have any access data securely.

aside from being securely stored and encrypted.

it's monitored regularly as well for access controls.

>> Okay.

Anything you want to add, doctor Patak?

>> Yeah.

So the the company that we've collaborated with for this project is helix.

Helix is based in California.

and they partner with 16 other healthcare.

Organizations across the country.

So this is a national network.

All the DNA analysis is being done in California in one facility that is airtight, secure and visited the facility.

It's as good as it gets.

State of the art for both the technology and the security measures.

>> Ultimately, going back to your reporting here, Raquel.

Yes.

people eligible for this are 18 or older.

No insurance required.

And the goal is for what, 100,000 participants who live in New York?

Is that right?

>> Who live in this region?

>> Yes, yes.

Over five years.

We're looking to invite 100,000 participants to enroll and participate each each of the, 16 health systems participating in this research program have committed to the same.

So this will be a very robust and powerful database for us to learn from.

>> And I will say this, Evan, at the press conference.

Right.

I'm pretty sure our experts here spent a quarter of the time answering safety and security questions.

Right.

Because this this has been a main concern for a lot of news outlets as well.

And for the community.

So yeah, 100,000 people.

I don't think that would be.

Is that a.

>> I mean, that's a that's a big sample.

>> Size.

>> You know, when we talk about surveys and what like what's a good sample size for medicine?

100,000 is a big one.

and how many you have enrolled so far?

Have you started enrolling?

>> Oh, we have I participated myself.

I can I'm happy to share that I participated and it was great experience.

We are right around 6500 participants.

So going strong.

>> Okay, 100,000 over the next five years.

You said.

Correct.

Okay.

And so listeners, let me kind of open it up to the audience here.

How much information would you want on your health if you could get it?

Would you participate in a program like this one?

And what do you think you would do with information?

in a moment, we're going to talk about, you know, when you do get news that is tough.

What happens?

Because I think for people who this is a conversation that comes up in a number of different health conditions, but it's like, do you want to try to make changes?

Do you like the way your life is right now?

How much you know, how much do you want to change right now?

So I'd love to hear from you listeners on this.

you can email us at wxxi.org.

You can join the chat on YouTube if you're watching there.

If you want to call the program, it's 8442958442958255263 WXXI.

If you're in Rochester 2639994 and on the GenoWell website, you ask, how is GenoWell different from historically unethical research activities like Tuskegee, like Henrietta Lacks?

Right?

I mean, you put it right out there, you understand some of what is going to alarm some of the people commenting on Raquel's story.

and I think the way I took that doctor is you want to be proactive about telling people I know you may have uneasiness.

We understand the history and your intention is not to ever be on a list like that.

>> Absolutely.

Is that right?

We're going to keep the information as private as it needs to be.

so obviously you need to share the information with the right people, the providers who are going to care for you based on it.

But beyond that, it's very, very tight.

It cannot be accessed.

>> Do you want to add to that, too?

I mean, those those cases are big names in history, and there are a lot of communities, especially the black community.

You think about Tuskegee.

It is that is a lot of pain over a lot of time.

So I think a lot of people, when they come into the office are going to say, wait, right?

>> And that's why we follow our research protocols.

This is a strict, highly, highly regulated.

We're following a very specific research study protocol that has to be reviewed and approved by an institutional review board.

>> So Raquel, before we let you go here and get back to work upstairs here.

What are you going to what are you curious about going forward here?

I mean, I've got plenty of questions we're going to talk about for the rest of the hour here, and we'll let our listeners weigh in, too.

But as the reporter here, what do you what are you curious about?

>> I'm curious about the next steps, right.

When you find out what's next.

And I know at the press conference I did mention, you know, the testing is free, but at what point does everything become not free, right?

Yeah.

And.

And where where do we go from there?

>> I think that's a great question, because Dr.

Patak told Raquel, this isn't just about risk.

It's about readiness.

It's about ensuring communities have access to the same cutting edge tools as the rest of the country.

>> Correct.

>> But that's in detection to Raquel's point, right?

I mean, the treatment is a different story, isn't it?

>> Correct.

So the part that's free is the DNA sequencing storage of the DNA reporting of the CDC tier one conditions and one round of genetic counseling that tells you what to do with the information.

Beyond that, if you need tests, if you need mammograms, if you need MRIs, those things are part of your healthcare.

They'll be billed like any other health care.

>> Okay.

>> anything to add on that point?

>> Just that we have a dedicated genetic counselor in our team.

So anyone who has a positive result, we will be contacting them to offer that no cost genetic screening.

And really, it's to meant meant to inform them about that and what that means for their health so they can take proactive measures and create a care plan, you know, a treatment or care plan of whatever's next for them.

And the right clinical steps.

>> you got time to hang for a few phone calls here.

>> Oh, yeah.

>> Sure.

>> All right.

Let's.

>> oh.

I was going to grab.

>> I was going to grab Dana and Mendon.

We'll get back to Dana in a second.

I think we've got Mike, Mickey, Mike.

I think it could be Mikey and Henrietta.

>> Go ahead.

>> Oh.

Hi there.

I have a concern.

you know, a year ago, I probably would have signed up for something like this so I could discover if I have future problems.

But with today's political environment and then wanting to create lists, I see this data being used against me to say, we're not going to insure you because you could have prevented this or something of this nature.

I don't trust it.

>> Okay, hang there for one second, Mike.

That's an interesting point there.

It's not that he's worried about some sort of nefarious use of DNA.

It's more like in the future, my insurer is going to say, hey, you participated.

You could have made the changes, and now we're going to deny a claim here.

Are you worried about that?

>> Not so much.

I think the the advantage of finding out early and intervening so far supersedes any effect that you might have on that kind of future twist.

Is this going to be part of your health record?

Might someone fish it out and say, well, I'm going to have trouble giving you life insurance because of this?

Possible.

We haven't seen it.

We haven't seen it.

>> Okay.

>> I mean, I mean, you've met insurance companies, though.

>> Insurance companies are tough and they'll be looking for things to make your rates higher.

And this could be one of them.

>> But in addition, though, there are other, you know, federal laws that are in place right now, like Gina, laws that protect for, of course, health insurance and employment, you know, those those areas.

So those, those laws do currently protect have protections in place.

>> Okay.

Let me just ask Mike if he wants to jump in on any other points there.

Go ahead.

>> No, I just wanted to say I don't trust what federal law is.

tomorrow or next week.

This is a this is a real problem.

But I thank you for your time.

>> All right, Mike, thank you.

I mean, listen, everyone's going to have a different baseline of where your trust in the system is, and that's up to GenoWell to convince you that what you're sharing with them is going to be protected and it's in your best interest.

And some people will decide it's not, which is okay.

You've had more than 6000 who've already decided they want to do it.

You think you can get 100,000 in the next five years?

Let's get Dana in Mendon.

Next.

Hey, Dana.

>> Go ahead.

>> Hi.

Thanks for taking my call.

so my question was I have an adopted daughter from Romania, and, you know, I often wonder because she can't answer any questions about history.

That boy, why don't doctors and, you know, the organizations have something in place for people who have no idea what their precursors are from generational illnesses?

and I also agree with Mike.

It is worrisome about, you know, would that information be used against you for your insurance rates going up and so forth?

but I think a lot of people have already used that kind of thing with the DNA in me and things like that.

So I think there's some multiple issues with with that as well.

>> Yeah.

>> I'll let you respond.

>> Yeah.

>> Dana.

Thank you.

I mean, so before I let our guest jump in on that very similar email comes from Ruth, who says, as someone who was Ruth in Rochester, someone who was adopted in New Jersey in 1950, the records were sealed.

Consequently, I have no idea what might run in my family.

I got some information from 23 and me.

I got nothing from ancestry.

I'm hoping to find out more about what might run in my biological family, and I've already had the blood draw.

So what would you say to Ruth and to Dana about issues like this?

>> We have had several people reach out who are in similar situations, who don't have, who may have been adopted or have children who are adopted, who are very interested in participating for that exact reason, just to learn more about their health, because they don't have that history.

in addition, I wanted to mention that with the CDC tier one results that are reported back for the program, it also includes reporting back information about your ancestry and health traits.

So a lot of people have found that to be impactful as well.

You know, where you're from traits like are you sensitive to caffeine?

How are your sleep patterns, how does cilantro taste to you?

Lots of different, different insights into your health.

So, it is it is also a helpful tool to learn more about your ancestry.

>> Okay.

You want to add to that, doctor Patek?

>> No, I was going to say that the fun facts with whether you're sensitive to cold or whether you hate cilantro, those are in your genes, too.

And we report that they're not of any medical value.

But people are interested in that kind of information.

>> I was given so much grief that I didn't like cilantro growing up.

I didn't know it was in my genes.

I'm going to blame that on not not being a bad.

>> Eater.

It's genes.

Genes I didn't.

>> Even think about.

I didn't think about the people that were, you know, adopted and and don't.

>> Isn't that interesting?

Yeah.

>> That's a.

>> Very important point to them.

Yeah.

Yeah.

Absolutely.

And so I really thank you, Dana.

thank you, Ruth, for the email there.

Grace in Rochester next.

Hey, Grace.

Go ahead.

>> Hi.

I have some questions about what information participants are given.

So, like, what genes are you specifically screening and are you giving us a full map of the genome so that we can examine it ourselves?

And also, are you going to give explanations about epigenetic factors and certain epistatic interactions between genes?

yeah.

And also, is there going to be qualification in certain cases about where research is ongoing and there might be uncertainty about certain conclusions you offer?

>> Okay, Grace.

Thank you.

>> Yes, I can answer that.

So the whole genome is being sequenced.

So they're doing what's called exome sequencing.

And exome is the part of the DNA sequence that codes for a particular protein.

So any protein that's being coded for we have the sequence and it's being stored.

It's not all being shared though.

The part that's being shared is the CDC tier one conditions.

And there are nine 1011 gene mutations that we report for those conditions.

So it's the breast and ovarian cancer gene, the Lynch syndrome that makes you prone to colon cancer.

And the familial hypercholesterolemia which makes you prone to heart disease and strokes.

That's all that's being reported in your medical chart.

Then the ethnicity and the other interest information that's on the helix website.

So you have to go create a helix account and go look it up there.

Because from a medical standpoint, that's not important to us.

>> Okay.

Does that answer your question there, grace.

Grace, are you there?

>> Thank you.

Am I still on the line?

>> Yeah yeah yeah.

Go ahead.

If that answers your question.

>> I'm wondering what about Alzheimer's?

Is that or dementia?

Are those going to be screened for any information there?

>> Well, there is a genetic mutation that's associated with Alzheimer's.

The 25% of the population has, but that is not considered CDC tier one because there's no intervention that can change the course of that at this point.

So it might be used in the future for research studies and things like that.

We're not reporting that right now.

>> make sure I understand that part correctly.

Dr.

Patek, a quarter of the population has a gene marker for Alzheimer's.

>> Has a gene marker that makes them more prone.

It doesn't guarantee that you'll get Alzheimer's.

Sure increases the risk.

>> But you're saying because there's no effective therapy, et cetera.

you're not sharing that.

What if I said, look, if I'm not in that 25, I'd love to know that too.

We're not going to know.

>> We're not going to do that with this study.

>> And the results.

Excuse me?

The DNA when it's sequenced is not interpreted for all of the other possible genetic mutations that somebody could have.

So the results are not interpreted for something like Alzheimer's.

Right.

So that's something that if somebody felt it was relevant, could order in the future.

For somebody who does participate in this program.

So your provider says, hey, I think you need to have this genetic test two years from now.

They could order that for somebody who has gone through this program and it'd be a lot quicker, easier, lower cost to to obtain that result.

>> Or I think you have hemochromatosis.

I want to order the genetic test.

I can order it and see if you have that gene.

I want to see if you have Gaucher's disease.

There's a whole list of things like that that can be looked for in the future if clinically indicated.

But none of those are conditions where we've said everybody ought to be screened for them.

So we're trying to stay stay away from that.

>> So the tier one is the ones that you can intervene and provide treatment.

>> And that's what is actually interpreted as part of this program.

>> Yeah.

And that's where Greg comes in with a question.

Is the information shared not with participants insurance companies in the future but right now.

And it sounds like when you say you put it in your the chart, the tier one goes.

>> Into tier one.

>> In the chart.

Correct.

That does get to the insurance companies, right.

>> It could get to the insurance.

>> It's protected just like your other your health data.

You know you have to as a as it's your health data and it's up to you if you opt to release that to another party.

>> I don't know if you knew this, but I don't think people trust insurance companies.

>> here's what we're going to do.

I have more emails coming in, and I I'm sure there are more questions.

So let's do this here.

first, I want to thank Racquel Stephen for popping in and helping put this together for us.

Great reporting for WXXI News, as always.

And I know you're going back to work.

>> Always.

>> Good to create a frenzy.

I love it.

>> Well.

>> Thank you.

>> And we are we are talking to a couple of guests in studio Heather Bacchetta, who is director of precision medicine for Rochester Regional Health, and Dr.

Prad Phatak, who is medical director of Precision medicine, medicine for Rochester Regional Health and principal investigator for GenoWell.

We're talking about what GenoWell is doing, which is asking you if you want to be part of this program, where they are collecting information from you about your health and looking to screen for future possible markers of illness, the kind that's treatable.

And would you want that information?

Or do you feel like you'd want to be part of the 100,000 people that they're trying to attract to do this over the next five years?

So if you've sent an email, we're going to get to that.

On the other side, it's Connections.

At Wxxi.org.

You can join the chat on YouTube, like and subscribe WXXI News there.

Or you can call the program toll free.

Now that we've got a few lines open 844295 talk.

It's 8442958255263 WXXI.

If you're calling from Rochester 2639994.

I'm Evan Dawson Thursday on the next Connections an A.I.

video in the town of Pittsford got a lot of attention before it was taken down.

It was made with A.I.

actors that made people well, I would say people.

It looked like people talking about the issues in the town of Pittsford, but it wasn't real.

It was A.I.

Is this the future we're headed to?

And are you okay with that?

We'll talk about it then.

In our second hour, the state of children's literature in 2025.

>> Support for your public radio station comes from our members and from Mary Cariola center, proud supporter of Connections with Evan Dawson.

Believing an informed and engaged community is a connected one.

Mary Cariola.

>> Welcome back to Connections.

It's one of those days.

We just ran a promo for a show that's not airing tomorrow.

I don't know where that came from.

That's a actually, I know where that came from.

I probably made a mistake there.

Tomorrow on the talk show.

We're very excited.

We're talking to Zach Mack.

He is a public radio producer and Zach Mack is behind a three part podcast series that you might have heard earlier this year.

The brief story with Zach is that his dad went down a conspiracy rabbit hole, and he and his dad bet $10,000, $1,000 a piece for ten different conspiracy bets that his dad said would happen, including Barack Obama is going to go to prison for treason.

Donald Trump would be reinstated before the 2024 election without even needing to win because of proof in court that 2020 was stolen.

A father and son betting $10,000, and his dad agreed to do interviews throughout the year.

Fascinating stuff about how we form beliefs, what might change our mind, how relationships form or erode.

Zach Mack is going to join us tomorrow.

I'm really looking forward to that conversation.

We're talking about GenoWell this hour, and I'm going to get back to some of your emails and questions in just a moment.

But in general, if you listen to the first half hour, what what you heard is a lot of, I think, very valid questions and also some resistance to the idea of sharing information.

and I, you know, we've talked about some of the history, but in general, Prad Phatak what do you think the suspicion or the, the hesitance comes from?

>> So I think there are two things.

One is this general fear of, you know, what are people going to do with my genetic information?

And am I going to be?

Just.

But that's that's small stuff.

I think our bigger enemy actually is Fofo fear of finding out Fofo.

>> Fear of finding out.

>> Fear of finding out.

I think people are afraid to do screening, screening tests.

I mean, there are things that are well established, like colonoscopy when you're 50 mammograms every year, how many people actually do that stuff?

It's proven to be beneficial by finding cancer early.

This, I think, falls in the same kind of category.

>> So this is the next iteration, next generation.

>> Next generation of that.

You're doing a screening test to find if you're prone to this so you can be taken care of properly.

People are saying, I don't want to know.

I don't want to know if I have this because it's going to affect my life and it's going to make me do all these things that I don't really want to do.

I don't want to do mammograms and colonoscopies like you will suggest.

>> I, I know someone who's has a child who there's questions about gluten sensitivity.

And the child was like, I'm not ever going to stop eating bread, so don't tell me.

I mean, so sometimes we construct these walls and I think probably for most people, as understandable as that, is, Dr.

Patek, when we get good information, we're very capable of making changes if we decide.

>> So I think we need to decide to we need to get over those anxieties and fears.

of finding out, because finding out can only make a positive difference.

>> And you decide what you do with what your results.

Right?

You have the ability to decide what path you want to take with that information.

The other thing that's really helpful about this program, too, is that it empowers people to learn for their family's sake.

Some some folks participate because they want to know if they are a carrier for one of these genes so that they can help, you know, empower their children to learn about their health.

Right.

So it does include family variant testing as well.

So if somebody has a positive result that may indicate that their family members, you know, they may have children that have that gene, they may have brothers and sisters or parents who have that gene.

So it doesn't necessarily just impact that one individual.

It can impact a whole family.

>> I want to add that the program does offer free screening to first degree family members of affected individuals.

>> So in a moment, we're going to talk more about how the research happens and how people can get involved if they want to.

Not because we're running an ad for a company.

We're doing it because there's obviously a lot of interest.

And my guess is the future will find that this is even more common than we realize.

I mean, I understand the resistance, but I also understand that this is where we're going.

We can shine a light in a lot of places where in the past we couldn't do that.

So we'll talk more about getting involved in a moment.

Here.

Let me just read two other emails from listeners.

Marcia says my mother had colon cancer at age 76.

So when the opportunity came to be tested, I was on board immediately.

My father died at 50 from a stroke, and I have no information about family health issues on his side.

My final results came in today.

I have no genetic connection to any of the illnesses that I was tested for, and I am so relieved.

That is from Marcia.

Marcia.

Wow.

I mean, today you got.

So first of all, I'm glad to hear that for you.

And I, I can feel the relief coming through the email.

There's probably going to be a lot of that in this kind of study here.

You're going to meet a lot of people who just have that feeling of relief.

We're talked about empowering people.

The idea of empowering people with information when it's not the result they want, but they at least still have the information.

The relief is also pretty valuable, isn't it, doctor?

>> Absolutely.

But I do want to add one little caveat to that, though.

if you really have a very strong family history.

So you tell me, three of my siblings had breast cancer before the age of 50, and the GenoWell study comes back negative.

This is not a full screen.

We're only reporting the CDC tier one genes.

So if you have that much of a history, I'm going to recommend that you see a genetic counselor anyway and that we do a more complete clinical panel that's indicated for that kind of circumstance.

So this is not a cover all screen okay.

>> Anything you want to add there.

>> No, I think I think that covers that okay.

>> Mark wrote in about why are we trying to play God with our health.

And again this goes back to everyone's got their own personal preference on how much information you want.

And again, I'm not running any interference for our guests.

They can speak for themselves.

But I will say this, Mark, I do think Dr.

Patek makes an important point when it says this is not the first time we've ever been able to test for something in the future.

This is not inventing from whole cloth the idea that we were entirely in the dark about our health, and now we have this new, this new tech, this new research option, this kind of genetic testing.

Again, if you have breast cancer in your family, you've probably had the day where the results come back and family members are getting those results.

And I hope for everyone listening that it's been favorable for you.

But if it's not, you get information.

So.

But to Mark, that's playing God.

Everyone's got a different line and I suppose that's fine, right?

I mean, people don't to do it don't have to do it right.

Heather.

Right, right.

>> But I mean, I guess I guess in one, one potential response to that, you know, coming from having been in our cancer, worked in our cancer center previously before my, my current role you know, you see patients who come in to the cancer center who have, you know, this, this such a challenging diagnosis with, with cancer.

Right.

And and you find out after the fact that they have BRCA, a BRCA one gene, right.

which is one of the genes that we test for one of the 11 genes.

And as opposed to them finding out that they have stage three or stage four cancer, and then finding out after the fact that they have this, you know, they have BRCA, why not why not learn about being a carrier of that gene first.

And so you can have your mammogram earlier before before the age of 40, you know, and maybe identify that you have you know, detect disease earlier.

So we see people who participate in the program who find out they have one of these genes, have an intervention earlier, a screening earlier, such as a mammogram.

As an example.

And, you know, could catch cancer earlier, maybe a stage one cancer and have an amazing life after that and an amazing outcome and be rid of their cancer.

So that's that's one example of why we why we believe in this program.

>> I think Mark's rhetoric, they're playing God.

It reminds me, Heather, of the debate that's happening in a separate field from yours.

But it's gets pretty emotional when we talk about genetic screening for abnormalities or abnormalities in vitro and what you do with information like that.

And there are families of children and adults with all kinds of different conditions people living with down syndrome and people saying like, are we going to have a future without down syndrome?

And is that even a desirable thing?

Does that deny the humanity of people?

So I understand where Mark is, but I, I don't think it's quite the same thing here, Mark.

I mean, I don't think this is a company or people in medicine trying to tell you what you have to do with information.

There's a difference between empowering someone with more information versus saying, we can really, you know, sort of reshape the human experience.

So, I don't know, I, I, I understand it.

Everyone's got a right to feel where they feel and I just don't necessarily see it in quite the same way.

But what.

>> Do you mean, we do we do lots of preventive things, right?

We screen for prostate cancer.

It's not a genetic test, but we do PSA levels on people.

So is that playing God looking for a cancer early and taking care of it before it causes a problem?

Why is this any different?

>> I understand that argument for sure.

So John in Fairport, let me go ahead and grab your call.

Hey there.

There you go, John.

Go ahead.

>> good afternoon everybody.

I when I saw this testing mentioned on the news the other night, I signed up immediately for it.

I'm 70 years old and in pretty good health.

I have two adult children, but are family history.

Medical history is pretty obscure.

There is you know, my mother was an orphan, so I'm doing this primarily to provide information for my two adult children, one of one of whom works for Georgetown School of Medicine.

By the way.

and I'm guessing he would have discouraged me from participating, but I like the fact that it is being done through a local, respected health care organization.

I understand the potential risks, but this is, to me much better than handing it off to Ancestry.com or another organization.

So I'm happy to be involved in this.

And hope to share whatever the findings are with my two adult children so that they can you know, make choices, make their own choices and choices for their families.

>> It sounds like you you said you kind of jumped on it right away when you heard about it.

so you've heard some of the pushback from some listeners.

But, John, you seem pretty comfortable with your decision.

>> Yeah, I think that and again, I don't know how you would know this, but I think maybe some of the younger listeners are concerned and I totally get that because I think my, my two children might be as well for, you know, the reasons of how will the information be handled?

what if what if someone you know, forces the organization to release this information?

can I get insurance in the future?

Those things.

So I'm I'm past that point of concern in my own life here, and you know, the I understand people's concerns, but I wonder how how age related they might be in terms of their, you know, pushback.

>> John, thank you for the phone call and for sharing that experience there.

how common is that perspective so far for for the folks you're working with.

>> So I guess, you know, the I just want to comment too, and thank you for sharing that and participating in the program.

you know, I just I wanted to comment on the, I guess, the, the security piece one more time to just to again mention that it is protected.

It's your health record, right.

As we tell everybody, it's your your health record, your your data.

it's protected by HIPAA, HIPAA, privacy laws as well.

So you know, our health system can't just release that data.

It's not used for any marketing purposes.

so just wanted to to mention that I know Dr.

Patak.

>> Just to add to that, you can opt out at any.

>> Time, right?

It's voluntary.

>> It's totally voluntary.

So if you decide at some point, hey, I've been hearing bad news about this program, there's something wrong.

I want out, we'll drop you and we'll get rid of your data.

And no one will ever see it.

>> Right.

Grace, who called in earlier, followed up to say the following.

She said it seems insidious that only the genetic markers that are currently treatable are being shared.

This ensures profit for hospitals and insurance rather than giving participants all the valuable future information.

I'll let both of you respond to Grace's point.

But one thing that comes to mind for me is you're not going to share Alzheimer's information right now, because it's not tier one.

It doesn't have treatment.

But certainly the medical community hopes it becomes tier one in the future.

Right?

Or is treatable in the future.

So why not tell me now if I've got some kind of a marker or gene that says I may have a disposition to it, knowing that in the future it might be treatable?

>> Well, part of it is you get deeper into the issue that people are bringing up, right?

If you know you have a gene that makes you prone to Alzheimer's, is that going to affect your insurability?

And if there's nothing you can do about it, do you really want to know at this stage?

so the CDC has a committee that's looking at this all the time and saying, okay, depending on the changes in medicine, what else could we learn from your genetics that we could really make a difference with?

And when that happens, we will modify our protocol.

So right now it's these 3 or 4 conditions.

If the CDC adds a condition and I know of 1 or 2 that they're thinking of adding, actually when those get added, we will add those.

And the information is already there.

The sequences are there, they will analyze them and we'll get back to the participants and say, hey, now you have this, that we know we can do something about.

>> Do you want to add to that?

>> Just doctor already mentioned this, but just that, you know, there's not clear benefit to sharing about the other.

Any other, you know, markers.

These are CDC tier one conditions right now that are tested that the CDC deems as conditions that by identifying these in the greater population, we have the ability to improve health outcomes for those individuals.

Right.

So that that is why those are the conditions that are part of this research program.

>> I think grace feels like it's a way to funnel new patients into a system that wants to make money.

>> I mean, these other, you know, let's say you do get tested for Alzheimer's and we don't know what to do with that yet.

That also could cause a tremendous amount of anxiety for people when there's not a great solution yet.

>> Cindy and Spencerport responding to Mark, who said, why are we playing God?

Cindy says, Mark, do you take any medications?

Do you get any medical procedures?

They are useful.

Advances in medicine.

This is just another tool.

The God I worship doesn't tell us to ignore science.

That's from Cindy and Spencerport responding to Mark and Dallas wanted to know who is paying for this?

If this is, if it's free to sign up and do this, who's bearing the cost of that?

>> The health system is bearing the cost for multiple different reasons.

So it's the goal of the health system to serve the community's health.

So this is serving that goal.

We think we're making the community's health better.

Eventually we're going to be paid by taking care of numbers of people in the community.

And if we can keep them healthier longer by finding these conditions and treating them earlier, it's going to benefit us financially.

Some of the idea of bringing some of that business back into the health system will help pay for some of the cost, but that's not the purpose.

The purpose is to improve the community's health.

That's our mission.

>> So the again, the way the money is going to flow is the the system pays.

Some people go through the program will get information that will make them patients that will help fund the cost.

Overall.

>> Some of it.

>> But the point you would like the audience to hear is that's not what's driving it.

>> It's not what's driving it.

It's it's improving communities, health.

And and by finding these people and doing the right tests and improving their health, we're raising the health of our community.

>> Okay.

Anything to add there?

>> I think that was a great, great response.

Thank you.

Dr.

Patak.

>> All right.

Do you want to talk a little bit more about the research and what you want people to know about how it happens?

>> So it's a very powerful research tool.

So think about this.

The helix company will eventually have 25 participating.

That's their goal.

It's a lofty target 25 participating institutions.

Each will bring in 100,000 people.

So we've got 2.5 million.

DNA sequences by 2030.

De-identify that and associate it with clinical information.

You can answer so many questions about how genetics regulates your response to treatments, your chance of getting particular diseases.

There's there's a trove of information in there that we can glean to get results that were never possible, because we never had this kind of database before.

>> So how are you attracting people to do this?

And what what do you want people to know about it?

If there's more Johnson, Fairport who want to get out there and and get get into this one here.

>> Yeah.

So get over the Fofo mentality.

say you want a.

>> Fear of finding out.

>> Yeah.

You want to know.

You want to find out because you can make a difference.

and this is something that's not only good for your health, it's good for the community.

And it's it's it's good for the research world and making advances in medicine in the future.

So medications that we're using.

So an example I'll give you is the weight loss medications.

GLP-1 medications that are used.

So we have this in the database.

The company is looking at what are the genetic profiles that determine whether you will respond to these drugs or not.

Isn't that important to know?

I mean that's not described up to this point, but I think with this database, we'll be able to answer questions like that, which is that group of people that are likely to benefit most and which people are not likely to benefit.

Not worth using these expensive drugs.

They won't work.

>> So how do you sign up?

How do you get involved?

>> So the process starts at our website.

So we have a GenoWell website with Rochester Regional Health that we direct future participants to.

And there's a wealth of information on the website.

There's a whole Frequently Asked Questions section as well, and a lot of information about the program as well as our contact information.

If if individuals have questions about the program, they can reach directly out to our team and we'll address those questions promptly.

but however, the process begins with our website.

There's an Enroll Now button that individuals can click if they want to participate.

It does require my care account, which is our electronic medical record.

Your personal account through that.

and it's a free signup.

If somebody does not have one.

but you just have to be 18 and older to participate.

You click the link to enroll.

It's a pretty straightforward electronic process.

It does include an online electronic consent process.

And once that consent form is completed, it comes back to our team and an order is placed for a single no cost blood draw, a simple blood, draw any of our Rochester Regional Health labs.

so we place the order.

We send that individual a message in my care saying, you can now go to any of our labs for your no cost confidential blood draw.

and that blood sample gets sent to our partner in this program, helix, to do the DNA sequencing and results come back in 2 to 4 weeks, potentially up to six, but usually about 2 to 4 weeks, and get returned to your medical record.

>> Okay.

So it's a it's a pretty short amount of time from start to finish in this process.

Yeah.

>> Yes.

It's pretty quick turnaround okay.

And I was going to add to we reach out to everyone who participates whether you have a regardless of your result, if you have a negative result or a positive result, we follow up with everyone.

>> All right.

Tom in Rochester on the phone next.

Hey, Tom, go ahead.

>> Hey thanks so much for having me on.

not to feed a fed horse, but going back to the bit about Alzheimer's you know, we talked about.

Do you really want to know?

Even though it's not treatable, I would argue, like I'm in my 30s.

If I knew that I had a genetic marker for Alzheimer's.

It may not be treatable, but there are things that I can do to prepare financially for that eventuality.

You know, in 40 years.

so, yeah, even though these diseases may not be treatable, there's still stuff that we can do to prepare for that future.

just wanted to get that comment in.

>> Okay, Tom.

Thank you.

So that's another vote for releasing more information there.

I don't know if it's gonna sway the team here, but it's there.

There's another one in in that know you heard Dr.

Patek explain their reasoning for not doing it right now.

but I appreciate Tom's perspective on that as well.

we've got another question from let's see here.

Madhu says, isn't there an NIH program called All of Us?

What?

The same kind of data is that the same kind of thing.

>> It is doing sequences, DNA sequences on people, but it's not continuing to associate clinical data over time, like this program is.

And it's not reporting CDC tier one conditions like we are.

It's not reporting anything.

It's purely research.

>> Okay.

>> this is Bonnie in Fairport.

says I tuned in late, but I wanted to ask about sharing of the information with the FDA.

I was well into registering when I saw that's where the information would go with dosage and government cuts.

I'm not sure how safe data with the FDA is.

>> I don't think the data goes to the FDA.

>> So there's something lost in translation.

>> Something lost in translation.

>> So Bonnie was was says she was registering and thought she saw that her information would be shared with the FDA.

No.

Not happening.

>> She can reach out to us too, and we can help clarify any questions.

>> But but for Bonnie or anybody listening, that is not where the data.

>> That is not happening, it's being shared with people that are doing legitimate research.

And that too has to be cleared by us.

If we don't think it's above the bar, we won't do it.

>> Sylvia is worried about what the government will try to do with any information in health care systems.

Try to take the information, Sylvia says.

Right now our government is doing what it pleases.

I could see the possibility of this information being seized in the same way other protocols and laws are being ignored.

So setting the guardrails up that you want to set up, Sylvia is worried about a more authoritarian government that doesn't care about guardrails and wants to take everybody's information.

>> I mean, I think if that hypothetical could happen, it would apply to all of your health data.

I think that's that's a if that's a concern.

I think that that's something probably a much broader you know, it would be a broader thing to not have to deal.

>> With not just the people in your program are going to be in trouble, right?

>> Correct.

I mean, do you do you not want to know that you have a high cholesterol?

Because somebody is going to find out that you're at risk for heart disease?

I mean, it's a similar kind of thing, Dennis.

>> And Parenting says, I wanted to echo John's point that if you have children, you are obligated to let them know if they may have inherited any genetic genetic conditions so they can make their own decision early.

Regarding preventative care, I found out by chance that I have two genetic variants that could affect not only my own health, but that of my children.

Now they can be tested and begin early to prevent illness.

That's Dennis in.

>> It's absolutely true.

And it's a common reason why someone in their 60s or 70s who might be completely healthy says, I want to participate in this because I know I've been lucky.

Nothing's happened.

But if one of these things is found, my family can be screened for it.

Absolutely.

>> So as we get ready to wrap here any information online that you want to share, can people learn more online?

>> Absolutely.

On our GenoWell website, there's there's an immense amount of information that they can learn from, and they can reach out to our team directly for any additional questions or follow up.

>> Are you concerned, Heather, about getting to that 100,000 number?

You think you're going to get there in five years?

>> I'm not.

We're going to do it.

We're on our way.

And I think, you know, having opportunities to have outreach with our community to share, share about this exciting program and empower people to learn more about their health and use this as a tool in their pocket, you know, for, for taking proactive measures for their health, I think is really going to help us get there and achieve that goal.

>> Dr.

Patek, you want to close with some ideas about what you think this opens up in the future and how this, in your words, could make people's lives better.

>> Absolutely.

I think this is the future of medicine.

Your genetic profile will determine so many things about your health, your response to medications, your likelihood of getting diseases.

it's personalized medicine to the nth degree.

I think we should all do this.

There's absolutely no reason not to.

>> And I would say that just listening to some of the feedback, there are plenty of people like Dennis and John who feel like this is they've been waiting for a chance to do something like this for their families, for their kids.

There's others who are very nervous about what this means for their future insurance, et cetera.

and I think that's reflective of a system that is hard enough to navigate right now.

I think that puts the onus on what you're doing to make sure that you communicate well, that you are transparent, and that you take those concerns to heart.

I know that's why you've written on your own website about about past mistakes that you've seen, but I don't think it's unhealthy to hear from the community on that.

And I hope you agree with that.

Heather.

>> Oh, absolutely.

We really appreciate everyone, everyone reaching out today during the show to to share their questions and concerns and stories.

that was really helpful for us to hear.

>> Well, let's talk in the future to see how it goes here.

I'd love to.

And thank you for for sharing more with us.

our thanks to Racquel Stephen, my colleague with WXXI News for Raquel's reporting on this, and you've been hearing Heather Bacchetta director of Precision medicine for Rochester Regional and Dr.

Prad Phatak, who is medical director of Precision medicine and principal investigator for GenoWell.

Thank you both.

And thank you, listeners for a really robust two hours here from all of us at Connections@wxxi.org.

Thanks for watching on YouTube.

Thanks for listening on our various platforms.

And we're back with you tomorrow on member supported public media.

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