Thứ Ba, 7 tháng 11, 2017

Waching daily Nov 7 2017

(somber piano music)

(upbeat R&B music)

- Leanna?

Are you okay? - Oh, I'm sorry.

I'm fine.

- I'm talkin' too much, huh, yeah I'm talkin' too much.

Look, you go ahead.

- I have something to tell you.

- [Man] Okay.

- I just don't know how you're gonna take it.

- [Man] Shoot.

- I have alopecia.

- Alopecia?

You mean like hair-loss alopecia?

- [Leanna] Right.

- Oh.

- [Leanna] I knew you was gonna have a problem with this.

- No, no, it's cool, Leanna.

My cousin actually has it.

It's completely cool.

So are you like,

fully bald, or?

- I could show you.

- Whoa, yeah, that's not necessary.

(somber piano music)

- Are you okay?

- [Man] I'm cool, I'm cool, yeah.

Completely cool.

- [Leanna] Are you sure? You look a bit knackered.

- Yeah, no no, I'm good, great.

Actually I need to run to the restroom right quick,

so if you could go over there and wait for me?

I'll be right back.

Food, you know?

- Brandon?

Bye.

(smooth R&B music)

- [Radio DJ] Hey, it's midday on the North Carolina coast.

Wanna give a huge shout-out to Mrs. Smith's Salon,

off Shipyard Boulevard.

- Girl.

I got this new girl working here, her name is Nelly.

Man, her hair looks horrible!

How are you gonna work in a salon and your hair looks worse

than the people that's comin' in here?

- (laughs) Miss Smith, you really need to stop.

- It's true, then she had the nerve to ask me

if she could get her paycheck early

so she could bail her boyfriend out of jail?

I mean, what kind of mess is that?

- I hope you don't tell my business like that.

- No and even if I wanted to,

you don't give me enough to work with.

I've got nothin'.

I've known you and your mom for a while now.

Neither one of you told me when you first found out

about alopecia.

- There are just some things in my life

I'd rather not talk about.

- I know and I get that.

But sometimes, girl, you just gotta let it out.

You've gotta get it off your cleavage.

Both of 'em.

- Get it off my chest?

- [Sophia] Yes, ma'am.

(Leanna sighs)

- Well, when I was around nine...

- Hurry, your bus is coming, hurry.

(suspenseful atmospheric music)

- Did your mother say anything to you when you got home?

- Actually, no, she didn't have to.

A few days later we were in my bedroom and...

- Leanna? (muffled sobs)

Leanna?

Leanna?

Leanna, what's the matter?

(Leanna sobs) (melancholic string music)

- [Leanna] And that's where it all started.

Then there were the kids from school, the neighbors,

the comments, not to mention the relationships.

- Oh, Mrs. Smith is truly sad for you,

but that's all in the past now.

You don't need to worry about that.

What you need to do is focus on God

and that handsome man he's gonna bring you.

- God, yes.

A man, well, I'm not quite ready for that right now.

- I know but don't you give up on what God has in store

for you, because sometimes it's not about you.

I mean, you act like you lost an arm or somethin'.

Just get over it.

- See, that's just it.

People are always saying "get over it."

But it's not that easy!

Everywhere you look, your hair, it's your beauty.

It defines you, but what about us who don't have it?

- I'm gonna tell you one thing,

if you use that tone with me again,

alopecia's gonna be the last of your worries.

- [Leanna] I'm sorry.

- Now.

(upbeat R&B music)

- What is he doing?

Will you please move?

Did he fall off the trolley?

- Hey.

So what's your name?

- I'm sorry, I have somewhere very important to go.

- Come on, just tell me your name.

I gotta know.

- I'm sorry.

- I just wanna know who you are.

- Why?

- [Man] 'Cause I'd be a fool not to.

(Leanna chuckles)

- Um, I'm sorry.

(bittersweet orchestral music)

(upbeat music)

- Baby, you don't have to stay here, I can handle this.

- It's alright, I didn't have anywhere else to go.

Besides, I have Robin coming.

- Robin?

You tricked her into coming here?

(chuckles)

- What now?

- Well, just look out for Sophia's nephew.

He's supposed to be bringing the dessert.

- Okay.

- I can't do this.

- [Leanna] Robin, Robin!

She does not look happy.

- [Robin] What is this?

This does not look like the party you described to me.

- If I would have told you, would you have come?

- So you lied?

- No!

Well, yes, I'm sorry.

- [Robin] You call yourself a Christian?

- I just need your help. - Help with what?

Changing diapers?

- Nothing.

- Exactly, see?

I have a real party to go to, adios.

- Robin, just a little bit.

- Oh.

- That's him.

Bumped into him earlier at the salon.

- And you let him go?

What is wrong with you?

- Just bad timing.

Actually, I almost ran him over with my car.

(Robin speaks Spanish)

- Well, not on purpose.

He got in front of it and I'm trying to leave.

- Hi, my aunt Sophia told me to bring this for you, ladies.

There you go.

Hi.

- Hey. - This is gonna be good.

- I could have died trying to get your name today, you know.

- I'm sorry, I was in a hurry.

- You in a hurry now?

- Kind of, the kids.

- You know, you're very beautiful, Leanna.

- Oh, thank you, I'll be back.

- What? - I'll be back.

- What are you running from?

- I'm not ready for a relationship, marriage and some kids.

- Are you crazy?

I know what you're running from.

- [Man] Are you okay?

- I just wasn't expecting that, sorry.

- Terrence and I came up with an awesome idea.

'Cause you wanted me to come here to help you with the party

I'll stay here while you two go nextdoor

to Jamaican Comfort Zone.

- Oh...

- [Robin] It's not like he's taking you to his place.

- Come on. - Okay.

- Bye, kids, have fun!

(somber music)

- I didn't know Miss Smith was your aunt.

- Yeah, yeah, she's awesome.

She does good work, too, I love your hair.

- Oh, thank you.

Do you know everything she does?

- I thought I did, I don't know.

Is there something she does that I'm not aware of?

- Oh, no, I was just wondering.

- So what brought you to Wilmington?

- Um, well, um...

My dad was in the military,

and he met my mom while he was on holiday

in Portland, England. - Cool.

- And, um, unfortunately he passed when I was about six.

I mean, long story short, um,

I ended up coming to school here.

So what evolution brought you here?

- Kind of a long story.

I struggled a lot in high school.

And barely made it to college.

Finally got there,

and I had this professor,

he was great, he was a really cool guy.

He believed in me, so...

I always knew that I was smarter than

the high school system said I was.

And I thought that I could create this code

to beat the lottery, to win it every time.

So by the time I was a senior in college I dropped out.

- Oh, okay, I don't think I'm understanding.

Why in the world did you drop out

when you so close to ending?

- Well, its crazy but I don't know if it was just luck,

or the code worked, but um, yeah, I hit the lottery for...

I hit the lottery for 1.5 million dollars.

- Wow.

Well, it's too bad I don't believe in the lottery,

'cause only God's my provider.

- [Waiter] Y'all doin' alright?

- Yeah, I'm good, thank you.

- Is there anything else I can get for you?

- No, we're good, thank you. - I think we're okay.

- [Waiter] Great.

- Hey, you wanna go dance?

- Right now? - Yeah.

- Sure. - Let's go.

(peaceful jazz music)

- What?

- You're beautiful.

You really are.

- I hope everyone is well rested on this Monday morning.

We have a new employee.

I would like to introduce Tasha Sprinkle.

Tasha, this is our lead team. - Hello.

- Tasha, this is Sergio.

Nick.

Carla.

Robin.

And Leanna.

- Hi.

- I would like everyone to welcome Tasha to our team.

She has a lot to bring to the table.

- Yes. - Yes, Robin?

- I was wondering just out of curiosity, how do we

incorporate Tasha into what we already have to be effective?

- She has-- - Oh, I got this.

- [Leader] Oh, okay.

- Well I'm bringing another level and with that level,

I'm gonna raise you to the norm and lead you to victory.

- Yes, victory.

We have some more good news.

We have decided who is going to lead our next project.

Leanna.

You will lead our next project.

Can we bring Leanna up here? (applause)

Congratulations, Leanna. - Thank you.

- [Leader] Welcome Tasha.

We have a lot of work to do.

Please get to work.

- I guess we can go ahead and get started.

You wanna go ahead and have a seat?

I guess we could get started.

- [Tasha] Excuse me, may I speak with you for a second?

- Yes, of course, how can I help you?

Of course, sit down.

- I thought I was hired to lead the project.

- [Leader] What would give you that idea?

- You said that you liked the way I led other projects

at Camille's right? - Yes, I did.

But that didn't mean that you would be lead.

- Well, what does that mean?

- That means that you can work your way up to lead,

like Leanna did.

- Okay.

I guess I understand.

- Okay, great, I'm glad that you understand.

Have a great day.

- She could at least made sure I get a desk or somethin'.

- Hi, Leanna Hillman checking in.

- [Receptionist] Yes, ma'am, have a seat, please.

- Alright, thank you.

Love your dress. - Thank you.

- Hi, I'm Jessica Smith, I'm checking in.

- [Receptionist] Yes, ma'am, have a seat, please.

- Thank you.

Hey, what are you doing here? - Hey!

Oh, you know my favorite part, doctors appointment.

- Girl, I tell you, don't you hate it?

But, here's what I think, who is the new chick they hired

up there with the ugly dress on?

- I didn't even notice.

- Girl, I saw that dress from the parking lot. (laughs)

It was horrible but anyway I like what you did to your hair.

You said you was gonna cut it and stuff.

- Thank you! - I love it.

- Guess who noticed it this time.

- Anthony? - Oh yes, he did.

- Girl, bye, I don't like him anyway.

Guys don't really pay attention to stuff that's important to

us like that like our hair, they don't pay attention to it.

- Oh, yeah I guess I'm gonna keep it this way because he

really, really loved it. - You should keep it that way.

It's your hair, don't worry about him.

But look, let me ask you somethin', are you off today?

- Yes, mm-hm, yes I am. - I need a big favor.

- What is it? - I need all my hair done.

But I need these edges done.

- [Receptionist] Miss Hillman?

- Hey, Leanna.

How you doin'?

- I'm good, oh, I like how you decorate the place.

Like, lobby and everything, it's beautiful.

- Thank you, you know,

your mother was the inspiration for that.

The last time you brought her with you to your appointment,

she was quite open about my choice of style, so,

I was just inspired to go ahead and redecorate,

so I'm glad you like it.

- Yeah, that's Mom. - Mm-hm.

You know, the last time you were here, too,

you were telling me about a date that you had comin' up.

So, how did it go?

- Oh, I'd rather not talk about that.

- Wow, it was that bad?

- It...

It was good, but um...

I broke my second date rule.

Yeah, I had too much confidence and I told him.

But it's alright though because he talked a little too much.

(both laugh)

- Well, I mean, it's better that you know now, right?

And I know it's hard, but trust me,

when the right one comes along, you're gonna know it,

'cause that won't matter to him, okay?

Alright, listen, let's get started.

I want you to take your wig off for me,

and I'm gonna close the door.

- Okay. - Alright.

Okay, how you feelin'?

- [Leanna] Um, it's a little sore.

- A little tender. - Yeah.

- Yeah, that's normal, okay?

So what you wanna do is go ahead and take that pain

medication that I gave you the last time,

so that you take that, any kind of headaches that you have,

it'll help alleviate that.

It should be gone by the end of the night, okay?

Alright, also I want you to come back in about six weeks,

and let's see how it's going, you know,

with these injections, they're not guaranteed.

I gotta be honest with you, there is no cure,

but this may help to stimulate hair growth,

and everybody's story is different,

but it's definitely worth a try, so come back in six weeks,

maybe we'll have a little peach fuzz?

And we'll take it one step at a time.

The other part I wanted to say to you also is please

manage your stress, I know you're going through a lot

right now, Leanna, but the stress is not gonna help

your body to get to heal for your hair to grow back,

so be mindful of that, don't worry so much.

It's gonna be okay, alright?

Alright, so say a prayer for me at church tonight.

- Oh, oh, oh! - (chuckles) You forgot.

(laughs) Alright. - Gotta go, bye.

(melancholic piano music)

♪ Lord, when you called me long ago

♪ I said yes

♪ Though the road has been rough

♪ I still say yes

♪ Sometimes I go all alone

♪ But my answer is yes

♪ As long as you're on the throne

♪ My soul says yes

- God is good, baby.

Yes, he is.

Yes, he is.

He's so good, so good.

- Can you control yourself?

- Honey, when the spirit hits ya,

you can't help but control yourself.

Hallelujah!

Yes, God.

Yes, yes, yes.

- What took you so long?

(Leanna sighs)

What took you so long? - I was busy.

- [Robin] Switch seats, let's switch seats.

- Why?

Hi. - Hi.

- Mrs. Siggly's giving me the creeps.

What took you so long anyway? - I was busy.

- Oh, whatever.

Sorry I asked, you're so secretive sometimes.

- Just enjoy the conference. - Oh, whatever.

- Nevertheless, neither is the man without the woman,

neither the woman without the man, in the Lord.

Amen.

For as the woman is of the man,

even so is the man also,

by the woman, but all things of God.

Amen.

Judge in yourselves is it comely that a woman pray

unto God uncovered?

Doth not even nature itself teach you that

if a man have long hair, is it a shame unto him?

Hear me now, but if a woman have long hair,

it is a glory to her,

for her hair is given her for covering, amen.

♪ There is a yes that resounds

- Y'all women so deep in the world,

you don't even know what's good for you.

But you, Leanna, when I heard the message,

you laid heavy on my heart, baby.

'Cause you know what, God put it on my heart, honey,

to let you know, honey, the word was revealed, baby.

You think about it, think about it.

The word was revealed.

Alright?

- [Robin] You should have at least called

so that he knows your interested.

- Oh, I hope he knows I'm interested.

I find him quite fit.

- I know he's interested also.

- How'd you know that?

- Come on!

Ready, go.

- For you.

Hi.

- What's all this?

- This is just me lettin' you know I've been thinkin' of ya.

- And what if I had somethin' to do after work?

- I'd come back tomorrow.

I thought we could hang out.

- [Tasha Voiceover] Oh I hope he did not come to get me

for some child support, I just started this job.

What is he doing here?

- You ready or what?

Come on, hop in.

- [Tasha Voiceover] Terrence and Leanna?

First my job and now my man.

(moody guitar music)

- [Terrence] You wanna go get a drink after this?

- No, thank you.

- Come on, it'll be fun.

- Proverbs 23:20.

"Don't drink to be drunk and don't eat to be fat."

- Okay. - I'm just joking.

- Yeah.

Look how clear the sky is right now, wow.

I bet if we came out here at night,

the stars would be unbelievable.

- Actually, if we did that I could tell a good little story.

Do you know the stars tell a story?

- No, I didn't.

- I used a star map using cylindrical projection before.

- [Terrence] (chuckles) What?

- I studied astronomy in high school.

It has to do with all of that.

- [Terrence] Cool.

What did you do whenever you went to college?

- Um, actually I got a full ride, I just didn't take it.

- You got a full ride to college?

You've gotta be some sort of genius or something.

Well why didn't you take it, what happened?

Were you scared or something?

- No.

- [Terrence] Are you sure, I mean, something had to happen.

You don't just pass that up.

- No.

- [Terrence] Come on, you could tell me.

- I wasn't afraid of anything.

- Leanna.

I just don't get it.

You've worked so hard.

Do you know how proud your dad would be at this very moment?

You've got a big opportunity at a big university,

and you go one month and then you quit?

- I didn't like it!

- I understand, darling, the kids, they're mean, I get it.

But you can't keep running from this forever.

If it isn't alopecia, it'll be something else.

- Something else? - Yes!

- I don't feel beautiful, I don't even feel pretty.

Mommy, this is ruining my life!

I'm sorry about earlier.

- [Terrence] It's okay.

Stuff happens, I guess.

- Are we okay?

- Yeah.

Yeah, we're fine.

We are the master of our fate.

We are the captains of our soul.

- (laughs) Sergio, pull up that video.

The one you showed me the other day about the pool,

and that person diving in it.

- Nick, I need you to come and look at those layouts.

- Um...

Can I bring my wings?

- Yes, Nick, come on.

- Yeah, Nick. (laughs) - Alright, see ya.

- See ya. - Did you pull it up already?

- [Sergio] Give me a second, let me find it.

- You need to hurry up and move from 3G to 4G.

- The world's slowest phone. - I mean, come on, man.

- Hey, everybody!

Hey!

Girl!

I had to tell you what was goin' on.

You remember when I was talkin' to you about my boyfriend

the other day? - No, I don't talk to you.

- (laughs) She's so crazy, we're such good friends.

- No. - Girl, he keeps calling me.

He is really pushing the marriage issue.

He is ready to settle down and I just don't know what

I should do, I mean, he is talking to some other woman,

but we have a child together and clearly I love him,

so I'm just trying to figure out what I should do.

Maybe I should just go ahead and settle down,

so I'm asking you for some advice.

Oh, you were asking his name?

- No. - His name is Terrence.

You probably don't know him, or maybe you do.

Well his aunt own that salon on Castle Street.

You know Miss Smith. (Leanna coughs)

Is she alright?

Okay, one bite at a time now.

So, I'm just trying to figure out what I should do.

I just-- - Okay, I've heard enough.

- Need a good friend. - I've heard enough, honey.

Let me think about it and I'll get back to you, okay?

- You're such a good friend. - I know.

- Thank you, girl, 'cause I just need to give him

some sort of answer, you know?

So we'll go from there.

You know better.

Okay!

Toodaloo!

- Adios!

That was weird, oh my God.

- [Leanna] Coincidence, right?

- I have a feeling you two are not gonna get along, honey.

- Are you coming in?

- [Leanna] (chuckles) No.

- Come on, you always have an excuse.

You've never been in my pool once.

- Whatever, actually I came over to talk to you,

about something.

- [Terrence] Okay, talk.

- Maybe after we eat.

- [Terrence] Okay, we'll just take a quick dip.

I have a change of clothes, you'll love it.

- No, no, no.

- Come on. - What are you doing?

Come on now, don't, stop playing, stop playing.

(somber orchestral music)

- [Terrence] You wanna try some, baby?

- No.

You know, I noticed you never say your prayers

before you eat.

- Well you always say your prayers before you eat.

- 'Cause I wanna honor God and thank him for my food.

- Yeah that's cool, but I mean, I don't.

- [Leanna] And why is that?

- 'Cause I don't believe in God?

- Oh, come again?

- I don't believe in God.

- Don't you think this is something that was really

important that you should have brought up

in the very beginning of our relationship?

- I mean, how important can it be if it's coming up now?

- I would think that if a woman says she's saying herself

for the sake of God, that maybe God might be

a bit important to her.

- Yeah but I knew a ton of church girls who said that

they were saving themselves and they'd give it up like that.

- But I'm not a church girl, I'm a Christian.

- I don't know what to tell ya.

I mean, I'm sorry.

- I've got to go. - Let's talk about it, don't.

Don't leave.

This is a lovely home you have here.

- Thank you.

Well, Leanna tells me you don't believe in God.

- Mommy! - It's okay.

Yes it's true, Mrs. Hillman, I don't believe in God.

- You sure are hungry.

You don't have food at your house?

- Mommy, mommy. - It's cool, baby, it's fine.

It's just that this pizza is delicious, handmade,

and I could see where Leanna gets it from.

- Leanna can do a little something.

After her dad passed, she had no choice but to help out.

- [Terrence] I know, I'm sure that was hard but,

hey, she was taught by the best.

- (chuckles) Thank you.

Have you ever thought about marriage?

- All the time.

I mean, how can I not?

Look at her.

- Natty Theese is gonna need a heavy tea cart to feed you.

- [Terrence] Okay it's just 'cause the food was amazing and,

I could see what a good job you did teaching Leanna.

- You're rubbin' it on a little thick, huh?

- [Leanna] Mommy.

- My mother told me that good manners will get you

far in life.

- But not into heaven?

- Mommy, this isn't your problem.

- My house, my problem.

So just tell me, what demon invited you here?

- You invited me here!

- [Mother] Alright, Mr. Smarty Pants!

- Just calm down.

- Okay.

There is no evidence that God exists!

Can you tell me where he came from?

- Calm down.

- You can't tell me where she came from so, I mean,

if he is real, let's say he is real, so,

what separates him from all the other gods to make him the

"one true god" that you church folk claim he is?

- (coughs) Let me... (coughs) - Mommy?

(Mother coughs)

What was that all about?

- I'm sorry.

- Sorry doesn't cut it.

Sorry doesn't excuse you disrespecting my mother.

- I was just voicing my opinion.

- It's not what you said, it's how you said it.

- Look, I was just being honest.

You know about being honest, right?

- I have something to tell you.

- [Terrence] What?

Come on, Leanna, tell me.

We're good.

Just tell me, Leanna.

- You know, let's just go.

- Hey, you know, I'm beat, I'm gonna get goin'.

- It's too late to drive back, just take the couch.

- Are you sure?

I don't wanna send you to hell or anything like that.

- Really, now?

Oh, come off it.

Just for you. - Okay.

(somber piano music) (water splashes)

(Leanna sighs)

(door opens)

(melancholic piano music)

- I'm sorry.

I can't do this, I'm saving myself for marriage.

- It was just a kiss, it's okay.

You know what, I'm just gonna go watch TV, then. (chuckles)

(Leanna pants)

- Father.

I want to thank you for being you.

You said "ask and you shall receive,

"knock and the door shall be opened."

Well, Lord.

I'm knocking really loud right now.

I'm asking for strength,

to keep myself pure,

while that sexy man sleeps on that couch.

I thank you in advance.

Amen.

- How you doin' today, ma'am?

Got a flier for you hot off at the press.

You don't wanna check it out?

- There's some guy out there trying to harass me.

- Out front? - Yeah.

- I'll take care of it no problem.

Hey, Calvin, hey.

Listen, if I'm gonna have you sittin' in front of my store,

I'm gonna need you to be just a little bit more friendly,

you know, friendlier with the customers coming in and out.

Please, just a little bit, okay?

Alright, thank you, appreciate it.

- What's up, man, goin' to play that lotto?

Got the winning ticket for you, guaranteed winner.

- [Terrence] No, I'm cool.

- Are you sure?

I don't know, man, you look like a pick three,

pick five, type of guy.

Yeah, I know I got your number right here, check it out.

Guaranteed, you can't lose.

You'll thank me later, buddy.

- [Terrence] Three, one,

six, zero,

three, sixteen.

No.

- You girls are just crazy.

You shave your eyebrows off just to draw 'em back on.

Stupid.

(water sprays)

But then again, everyone can't be perfect like me.

- I get the hint that you have a problem with me.

- Oh, you get the hint?

Honey, if I have a problem with you, trust me,

you will know it.

Oops!

My bad.

(somber atmospheric music)

- [Leanna Voiceover] Lord.

I need you right now.

I can't go on hiding.

I don't understand how something so simple can be so hard

to tell someone.

Just three words.

I have alopecia.

I have alopecia.

It's not as simple as it feels.

I know I've got to tell someone.

Someone.

I can't believe you have me out here like this.

- It's just hair.

- People are always saying that.

- I think you're making more of this than what it is.

- What if Terrence comes out here?

- His cheap behind?

How you gonna win the lottery and still be stingy?

(both laugh)

Come on, let's go.

But you know, if you try, do you trust me?

- I trust you. - You better.

'Cause I know where you live.

- I'm gonna have to move now. - Whatever.

Remember. (hums)

- Is that an American thing?

- Hey, beautiful. - Wes, what's up?

- [Wes] How you doin', come here, give me some love.

What you doin'? - I'm good, how are you?

- I'm good, I'm good, what brings you around here?

- Well, my best friend wasn't feeling too well,

so I figured it would be good to cheer her up a bit,

and bring her out. - Okay, okay.

- Leanna, Wes, Wes, Leanna.

- How you doin', nice to meet you.

- Hello.

- I gotta tell you, Robin,

you always stay with the pretty girl click.

- Well, what can I say, pretty girls need to stick together.

- Alright, I hear you, I hear you, you know what?

Matter of fact, I got something to cheer your friend up.

- Okay. - Give me a couple minutes.

And I'll be right back, okay?

- Alright, we'll see what you got.

- Sure, sure, I'll be back, alright?

- This might be your best plan yet.

- I told you, you're making more of this than what it is.

You've just gotta trust Robin, okay?

I'm not your best friend for nothin', baby.

At least I made you laugh, see, that's good.

(Wes clears his throat)

Hey, what's up?

- I'm back, I'm back. - You are.

- [Wes] You know what, I went to go get my friend Brandon.

Brandon, this is my old friend Robin.

- Nice to meet you. - Nice to meet you.

- Her friend was feeling a little down,

so I brought you over here.

Her friend name is Leanna, Leanna this is my friend Brandon.

What, y'all know each other or somethin'?

You know what, Robin, you're gonna come to my table, okay?

We'll leave them alone and let them get acquainted, okay?

- Alright, well I'll be back, you be good, okay?

I love you.

- How are you?

- Hey, good.

- Feeling better? - Huh?

- Are you feeling better?

Is that your friend?

- Yeah, let me go over there real quick.

(somber piano music)

- It's alopecia, you need to stay away from her,

'cause I heard it's contagious.

- I think it might be cancer.

- [Leanna Voiceover] Dear Lord.

It's me again.

I know I probably shouldn't ask this, please forgive me.

But, but...

Why me?

I just don't understand.

Is there something you want me to do?

Why can't you just tell me?

Why are you making this so hard?

My lord and savior.

Why, why aren't you talking to me?

Why?

Do you hate me?

Do you?

- I'm not sure this is gonna make you feel any better,

it wasn't alopecia that made him leave you at the table.

He likes white girls.

- Of all the words in the English dictionary,

that's what you come up with for my issue?

- Girl, I'm gonna smack the crust outta your lips.

How are your lips ashy?

(Tasha sniffs)

- You like my flowers?

- Sure. - Terrence.

He sent them to me.

I think I'm gonna say yes.

- Yes to what?

- [Tasha] Marriage, silly.

- Oh, congratulations. - Thank you!

I thought I told you he asked for my hand in marriage?

I thought I told you.

Yeah, he said that the other girl he was talkin' to

was tryin' to pressure him to be some preacher or somethin'.

She's so whack.

Yeah, so he clearly gets the picture, he wants a family,

and he knows that I'm more of a woman than she will ever be.

(gasps) I gotta go, gotta put my flowers in some water.

(giggles) Love.

- Is that your Terrence?

- I hope not.

- Hold up.

What about this white girl thing?

(knocks)

- Excuse me, sir.

Can I help you with something?

Son, are you okay?

- [Terrence] I don't know.

- Are you waiting for somebody?

- No, sir.

Well yeah, kinda.

- Well who are you waiting for?

- Oh, I don't know.

- Can I help you with something?

I can't let you just sit out in this parking lot.

- What's this church service like?

- You know how I feel about gambling.

- Come on, it's a little bet, $20.

I could get it to you on the first spin.

- Come up with something else.

- Okay.

Well I could think of another game with a bottle,

and me and you.

- Spin the bottle? (Terrence chuckles)

- No, truth or dare.

I'll go first. - Okay.

Truth.

- Truth, okay, um, let's see.

Hmm.

Who's Tasha?

Mm-hm.

Mm-hm? - How do you even--

- Ah-ah! - How do you know about her?

- Answer the question.

- She's nothing, I mean, that was a fling, it was a,

it was a mistake.

It's over, it's over.

- Okay. - Your turn.

Why haven't you gone to college?

- I let something hold me back.

(funky electronic music)

- What is it that you've been meaning to tell me?

- Something that is very hard to say,

and I think I'm just gonna go ahead and keep it to myself.

You.

Truth or dare.

- I guess truth, I don't know now.

- Alright.

Do you have a son?

- Yeah, yes I do.

He's seven.

(upbeat piano music)

- [Boy] See you later, aligator!

(door closes)

- What's up, buddy? - What's up?

- How you doin', man?

- I'm good. - You good?

You do your homework? - Yes.

- Hey, I want you to meet Leanna.

Leanna, Tyrel, Tyrel, Leanna.

- Hi, Tyrel, nice to meet you. - It's nice to meet you, too.

Dad, can we play a game? - Yeah, we could play.

Let me go upstairs real quick.

I'll be right back.

- He's yours and Tasha's son?

- No, he's my son and Tasha had him.

But he didn't have a dad and he needed one.

It was me and him.

- Why did you feel like you had to keep this from me?

(Terrence clears his throat)

- To make sure you're the one.

- [Leanna] So, what do you like to do?

- Um...

Well, I like sports and I wanna be an actor.

So I can have a supermodel girlfriend.

My dad says you're his supermodel.

(Leanna chuckles)

You're my dad's girlfriend, right?

- I guess.

- [Tyrel] You have to be.

You're the only woman he talks about.

- Oh, well that's good to know.

- Come on, gotta go, come on.

Let go, go on.

- Do you have a girlfriend?

- Well, there's this one girl in my class

I'm afraid to talk to.

- Why?

- Because I'm black, she's white.

Sometimes I wish I was white.

- Why would you wish something like that?

- Well, because all the girls in my class are white,

and sometimes I feel embarrassed,

'cause they don't know what I'm talking about.

- What kind of stuff?

- [Tyrel] You know, like, black TV shows, music and stuff.

- You should be happy with who you are.

God made you the way you are because you are special.

- Well, I know I'm special.

You know what?

I'm gonna be just like you.

- Like me?

Why?

- Because you know you're special,

and you're not afraid of who you are.

(phone vibrates)

- [Sophia] Hello?

What?

- Dr. Johnson?

Yeah, I have Dr. Johnson.

Yes, I have Dr. Messer on line three, I'll transfer.

Thank you.

How can I help you? - Hi, I'm Mrs. Smith.

I'm here to see Miss Hillman.

- [Receptionist] Okay, um, patient's first name?

- It's Gloria.

- Gloria Hillman? - Yes.

- And your relationship to that patient.

- I'm her best friend.

- Please have a seat and I'll let the doctor know

that you're here.

- [Sophia] Okay, thank you.

- Dr. Johnson, I have a visitor here for Mrs. Hillman.

Thank you.

(somber piano music)

(sighs)

- Mrs. Smith? - Yes.

- Hi, Dr. Johnson. - Hi.

- First off, I'd like to apologize due to the fact

that you're not immediate family,

I can only divulge so much information.

However, you are on the visitation list.

- Okay, so I can see her? - Yes, ma'am.

If you will please follow me. - Okay, good, thank you.

I'm gonna fix you something to drink, okay?

- Hey, baby.

(coughs)

Um, that's actually bad timing.

I'm going to be busy the whole weekend.

No, no, I'm just getting together with a few old friends.

I promise, I promise to let you know

when it's a better weekend soon, okay?

Okay, bye bye.

(coughs)

- Are you serious?

You cannot be this stubborn.

- Oh my goodness.

Are you still fighting to keep your mouth closed?

- [Sophia] Your daughter needs to know that her mother

was just in the hospital!

I see where she gets this hiding stuff from.

(somber orchestral music)

- I know my daughter.

I will tell her when the time is right!

- When the time is right?

When it's too late?

We don't want to lose you.

What would Leanna do without you?

- [Gloria] You just don't understand

how hard it's been for her.

- He's having a good year but you've gotta give

Canmuten a chance too, though, I mean--

- Oh gosh, all men do is talk about football.

- Oh come on, Olivia, Brady's so much better, you know that.

- Let me chat with my man right here it was good seeing you.

- [Man] Nice talking to you, go Patriots.

Come on, honey.

- [Calvin] There he is, the lotto king himself.

- Not today, man.

- What's the matter, you didn't hit that winning ticket?

- What's the matter is you stand out here all day

talking to people about religion, really?

I'm tired of it. - Whoa, relax, man.

Relax, okay, I didn't mean nothin' by it, man.

Just chill out.

- Alright, so let me ask you this, then.

If God is so real to you, where did he come from?

Where did God come from?

You know everything.

- I didn't say I know everything but I will tell you, God,

he didn't come from nowhere.

- Right, okay.

So, that doesn't explain anything to me.

- Alright man, look, first and foremost,

you obviously have an issue with God, that's your problem.

But think about this, think about this, okay?

The Bible clearly states he's the beginning and the end.

Okay?

The beginning.

Nothing was made without him.

I mean, he's the creator of time, air and space, alright?

I mean, he's not bound to it, you know why?

Because he created it.

It's hard for us to wrap our minds around it, because I mean

obviously we've always existed in time, air and space.

You know what?

Maybe you should try to understand God,

instead of trying to figure him out.

'Cause you'll never be able to do that, you know why?

'Cause you're not him.

Look, man.

I see you coming through here all the time, you know,

playing these lottery tickets,

I don't know what you're going through.

I mean, do you mind if I pray for you?

(both chuckle)

- Right here?

- Why not?

- Alright, I guess, yeah.

- You're not embarrassed, are you?

- I don't know, I've never did it.

- I'll show you, first time for everything.

Bow your head.

- [Leanna] Alright, this is what we have from the collection

of submissions that everybody submitted, any questions?

- I think it's missing some sex appeal.

- See, now why was my part not kept in the campaign?

It had sex appeal.

- I like it.

It's family-friendly.

- I agree with Sergio.

My part, sex appeal, add it back in and it will be perfect.

- [Sergio] Exactly.

- But the brand of the company is family-friendly but bold.

I do believe the bold is missing.

- I think Robin's idea best represents the brand.

Their brand is an NGP.

Nice Girl Power.

- Sex appeal.

- No.

We can come up with something more.

- Bald!

I do believe the bald is missing.

- Oh, I like it.

It's, it's...

Bold, it's beautiful, it's confidence,

it screams nice girl power. - Yeah, I love it!

- I hate it.

I mean, a bald woman?

That ain't sexy or beautiful.

I mean, think about this.

Nick, do you want an ugly bald-headed woman?

- If I like it.

Just because she's bald doesn't mean she's ugly.

- That's not what you're supposed to say.

But that's what I expect from a grown kid.

- [Leader] Tasha, this is unnecessary.

- Oh, no it's important that I get my point across.

Society wants a woman with long, beautiful hair,

who doesn't steal people men or their jobs.

- Tasha, that is enough.

- Terrence doesn't want no bald-headed woman.

Trust me, I know.

But I shouldn't have been--

- That's why your son's gonna be callin' me mommy.

(somber piano music)

(Tasha spits)

- Robin, go get security.

Did you hear me?

Nick, go get security!

- Is, (chuckles)

is this why you wanted a bald-headed head for your campaign?

Terrence does not want...

He doesn't know that you're bald.

(laughs)

Oh, he's about to find out now.

Baldy-locks, look at her, she's just a bald-headed hepher.

Look at this!

- Please.

Please don't tell him. (Tasha laughs)

- Baldy-locks!

Look at this.

She's bald.

(laughs)

She has a chair!

(Leanna sighs)

(phone vibrates)

- Hello.

(somber piano music)

(phone clunks)

(Leanna sobs)

No!

No!

(sobs)

No!

No!

(pants)

Mommy!

(muffled background chatter)

- Grace.

- What?

- Grace.

Remember when I asked your mom what separates Jesus

from all the other gods?

- Yeah.

- Well, the answer's grace.

And I know this now but I'm glad because I would have

realized what kind of confusion it caused between us.

- Confusion?

There would have been no confusion.

- Oh, you don't think so? - No.

I was actually gonna pick up the phone

and break it up a few months ago but I decided to wait.

- [Terrence] Don't worry about it.

(Robin sighs)

- Wow.

Beach is so beautiful.

What's up?

- I think he's gonna ask me to marry him.

- That's great.

Isn't it?

- I still haven't told him.

- Wow.

Leanna, what is it that you truly want?

- I want him to love me for who I truly am.

- But how can he when he doesn't know who you truly are?

(rhythmic electronic music)

(Terrence chuckles)

- I'm nervous, I'm not gonna lie.

When I first-- - Oh, um.

What are you doing? - Just listen, just listen.

When I first saw you, I knew that you were special.

I didn't know what it was that made you special, but,

I understand now.

I never thought I would fall in love and I never thought

that God would make the perfect person for me.

But I think that he made us for each other,

and, um...

And you're my best friend.

And the love of my life.

I just, I hope you feel the same way, too.

Leanna, will you marry me?

Leanna!

- I'm sorry.

I haven't been honest with you.

- What are you doing?

- I'm finally telling you the truth,

and showing you the real me.

(suspenseful swelling tones)

I'm sorry.

This is the real me.

I'm just tired of hiding, at work, at home, at school.

Most of all, I'm tired of hiding from you.

- I thought you knew.

- [Leanna] That I knew what?

- I thought you knew that I knew you had alopecia.

- Who...

- [Terrence] From the first day we met,

whenever you almost hit me with the car,

I went and asked my aunt all about you.

That wasn't gonna stop me from wanting you.

- You knew.

This whole time. - Leanna, it's fine.

Hey, it's okay.

Listen.

You know whenever a person gives her life to Christ,

and an angel is assigned to them,

well, you're that angel for me.

I didn't know what grace looked like,

and I didn't know what a blessing was,

until I met you.

Until I met you.

Whatever it takes to do this, I'm willing.

I'm willing.

So please, will you marry me?

- [Leanna] No.

You don't know the real me.

- Are you listening to me?

I already know.

It's fine.

- I'm not like most women.

The ones that have dealt with their insecurities.

I'm still dealing with mine.

How can I expect you to love me if I don't love me?

This is gonna always have some type of profound effect on me

no matter what we're doing.

No matter what we're doing.

Can you handle that?

(suspenseful swelling tones)

- I'd be a fool not to.

(upbeat R&B music)

- Um, Robin, guess what.

Come on! (laughs)

- She said yes!

- So come on down, Robin, so we can celebrate.

Bye.

Alright, we're about to tell him what we're about to have.

Shh.

- [Terrence] Hey, you wanna go get something to eat?

- Oh, yeah, sure. - Okay, great.

What are you doing?

- Trying to get in the car. (Terrence laughs)

But um, I've got a surprise for you.

- Alright.

- [Leanna] Look!

- It's a girl.

(both laugh)

- Yes, surprise!

Yes, we're having a girl.

For more infomation >> New Romantic Drama Film - Beautifully Insecure - In Stores Now - Stream Today - Duration: 1:26:12.

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State dinner menu seeks to suit both presidents' tastes and fuse different ingredients - Duration: 2:01.

Going back to the state dinner at the Blue House.

The dishes have been carefully selected and prepared at the top office.

Lee Ji-won explains the reason why some of them were chosen and what they symbolize.

'Suited to both presidents' tastes with harmonized ingredients.'

This seems to be the basis of the menu for the state dinner.

First up, some corn porridge, with side dishes like fried lotus slices and sweet potato and

pumpkin pudding.

These vegetables were what Koreans used to eat in harder times,... serving as a chance

for the two leaders to reflect on their countries' long and enduring alliance.

Next was grilled sole,... reported as one of President Trump's favorite fish dishes.

The grilled sole also has a special meaning for President Moon, as it was caught in his

hometown of Geoje-do Island, in the southeast of Korea.

With fermented soybean paste and other seafood adding to the soup's flavor, the dish seeks

to introduce the Trumps to a new, Korean way of enjoying fish.

The main dish was Korean beef ribs, seasoned with a special sauce made from 360-year-old

soy sauce,... showing what important guests the Trumps are.

With it, local rice cooked in a stone pot, together with side dishes including prawn

caught near Korea's easternmost island of Dokdo,... showed Korea's local and traditional

flavors.

And to finish, a fusion dessert,... triple chocolate cake with raspberry vanilla sauce,

and cinnamon punch granita served with dried persimmons.

President Moon also prepared traditional Korean stone bowls, brass spoons and chopsticks as

gifts to the Trumps.

The phrase 'We go together' and the date of the visit is engraved on the back of the spoons,...

emphasizing the strong Korea-U.S. alliance.

The stone bowl, according to the Blue House, is given as a symbolic gift to those who have

made remarkable accomplishments.

Lee Ji-won Arirang News.

For more infomation >> State dinner menu seeks to suit both presidents' tastes and fuse different ingredients - Duration: 2:01.

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Ketchup Gore Mod [Doom mod] - Duration: 10:05.

This game is being played with Flakes Doom and the Gambiarra add-on, so the arsenal is

different. The Ketchup Gore Mod V5 adds nothing more but Brutal Doom v20b's gore and blood.

The link to download this map, "Stranded in Hell" (made in Oblige), is available in the description.

This PWAD has a version that does not interfere with the codes of the monsters, the "bloodspats only".

This version can be used with WADs that have their own monster modifications, like Pirate Doom.

I fixed the Ketchup Gore Mod V5 for it to work on GZDoom 2.2 or higher. Before that, it was giving a

loading error and the game wouldn't start. The link on the description leads to that fixed version.

As I said, the Ketchup Gore Mod only adds Brutal Doom's gore and blood to the game. If you want to activate

SGtMarkIV's mod monsters too, you should only use Brutal Doom Monsters Only instead.

I had some grotesque mistakes on this map and this was one of them. I'll use resurrect and fuck all.

If I'm not mistaken, the Ketchup Gore Mod V5 is a more up-to-date version of Sergeant_Mark_IV's Universal

Gore Mod T4, but V5 uses the Brutal Doom v20b gore system. I wonder if this mod will be

updated further, since Brutal Doom is already going to its 21st version now and stuff.

The Ketchup Gore Mod is especially useful for adding in mods. I have seen many PWADs with it built-in.

This comic level of gore and blood is also cool for you to make your own Doom videos look cooler.

The link to more info about Ketchup Gore Mod and its download is in the description, as usual.

For more infomation >> Ketchup Gore Mod [Doom mod] - Duration: 10:05.

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Babblarna pussel. Babblarna Video Pussel för barn. - Duration: 2:33.

For more infomation >> Babblarna pussel. Babblarna Video Pussel för barn. - Duration: 2:33.

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MAIONESE CASEIRA SIMPLES COM OVO - Duration: 1:40.

For more infomation >> MAIONESE CASEIRA SIMPLES COM OVO - Duration: 1:40.

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🌍 Los Chakras, Qué Son y Cómo Funcionan · MUNDO PRÁNICO 🌍 - Duration: 11:45.

For more infomation >> 🌍 Los Chakras, Qué Son y Cómo Funcionan · MUNDO PRÁNICO 🌍 - Duration: 11:45.

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HOMEMADE CHOCOLATE SIMPLE AND DELICIOUS, Xavier Rodríguez - Duration: 50:43.

For more infomation >> HOMEMADE CHOCOLATE SIMPLE AND DELICIOUS, Xavier Rodríguez - Duration: 50:43.

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¿Es realmente necesario el Plan de Negocio? - Duration: 3:43.

For more infomation >> ¿Es realmente necesario el Plan de Negocio? - Duration: 3:43.

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Mass Effect: The Citadel - Spacedock - Duration: 3:44.

For more infomation >> Mass Effect: The Citadel - Spacedock - Duration: 3:44.

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How to remove background noise from camtasia 9|#6|2017 tricks - Duration: 1:03.

hello youtubers welcome in my channel i am back

with another video and in this video i

am to show u how to reduce background noise

from camtasia 9

i have record here 1 demo video

as u can see it has a lot of noise

hello youtubers this is my demo video

so i will reduce its backgroung noise

for that click on audio effect

drag noise removal in video

and then increase sensitivity

and increase gain

now let see

hello youtubers this is my demo video

as you can see thew noise has been removed

so guys today video is just this much i hope

this video help u if u have any problems

write it down on comment

For more infomation >> How to remove background noise from camtasia 9|#6|2017 tricks - Duration: 1:03.

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Keep your office in shape I Sennheiser - Duration: 0:31.

sitting at a desk all day is no good boy you need to get more active in your

office with the Sennheiser working Sennheiser wireless headsets could give

you high quality sound on the moon to make you healthier and more productive

their high quality economic design delivers the comfort and support you

need right through the day try it with wireless headsets free month

get your eyes

For more infomation >> Keep your office in shape I Sennheiser - Duration: 0:31.

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How to Crochet Corner to Corner C2C Winter Knit Hat part 3 English Subtitles Translations Teresa - Duration: 3:54.

please remember to hit the thumbs up if you like this video now we're going to

be decreasing and so I'm going to flip this around in this direction and I'm

going to attach my yarn I just kind of flip it over like this because it makes

less bulk and I'm going to go right here below the chain three you see that chain

three right there I hope you guys can see that wrap the yarn over pull through

pull through the loop on the hook chain three work three double crochet below

the chain three that's number two and number three work a slip stitch below

the next chain three work work a chain three and work three double crochet and

what we are doing right now is decreasing so we're going to turn this

into a square believe it or not it turns into a square can you believe that can

you guys believe that when you're looking at it it's kind of hard to know

how the heck this was created but it really does turn into a square and you

could mix it in with your granny squares too if you wanted to work a chain three

and then work three double crochet below the chain like that and if you

accidentally get an extra one it's not going to be the end of the world now

work a slip stitch through the first chain there just like that this is what

we have so now we need to turn we are going to work a slip stitch below each

of the first three double crochet this is how we are decreasing and that won't

be very noticeable at all now we're going to work a slip stitch on into the

chain three now work a chain three work three double crochet one two

three we're working right below the chain work a slip stitch below the chain

three work a chain three work three double crochet work a slip stitch below

the chain three just like that you could turn this into a blanket if you wanted

to make larger squares you can keep on going from here you don't have to stop

you can keep on making it as large as you want to but keep in mind when you

end here it has to be an odd number so it would need to be one or three to turn

around or it's not going to work out I trust me I tried that it didn't work

okay so I'm going to work a chain three and work three double crochet this is

our last one with the color black and then we're going to be changing to

yellow work a slip stitch in the first so now we're almost done I like to cut

off a little bit extra with these with two rolls because you will need to be

sewing them together now we're through with that we can set it aside now I'm

turning and you can see we got a nice little square going here it's got nice

little corners there edges those aren't corners those are edges

please remember to rate this video leave a comment in the comment section below

share this video with your friends subscribe if you are new thank you for

watching and I will see you the next time peace love and avocados

For more infomation >> How to Crochet Corner to Corner C2C Winter Knit Hat part 3 English Subtitles Translations Teresa - Duration: 3:54.

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Disney Pixar Cars Chick Hicks Dinoco King 43 Lightning McQueen 2017 Jeff Gorvette Disney Cars 3 - Duration: 10:05.

Disney Pixar Cars Chick Hicks Dinoco King 43 Lightning McQueen 2017 Jeff Gorvette Disney Cars 3

For more infomation >> Disney Pixar Cars Chick Hicks Dinoco King 43 Lightning McQueen 2017 Jeff Gorvette Disney Cars 3 - Duration: 10:05.

-------------------------------------------

How To Convert any Productivity project to any Productivity PLC - Duration: 4:24.

In this video we will show how to convert a project from one series of Productivity

PLCs to another. The Productivity Family of PLCs has 3 different platforms there is the

Productivity 3000, the Productivity 2000, and now the Productivity 1000. There are various

reason why you would select one platform over the other, two of the main reasons, though,

will be IO count and Price point. This is one of the things that makes this family of

PLCs so versatile, you can take a project created for a large-scale installation and

then convert that to a smaller setup, or vice versa. This allows you to reuse portions of

your ladder code, and not have to burn hours having to recreate the process.

Now I am going to continue on to show the basic process of converting a project, and

In this example, I will convert a project from a Productivity 2000 system to a Productivity

1000 system.

So to begin the process, open us the Productivity software and the project you want to convert.

Now, before you begin, and make any alterations, I would strongly advise that you select "Save

as" and make a fresh copy of this project, just to make sure that the original does not

get altered accidently. In this project I have multiple tasks, all

of which will be converted, in this process. Also, if I go into my hardware configuration,

you can see that I have multiple setups. I can see that the CPUs ethernet port is setup,

I have the Webserver setup and I even have a few Ethernet IP clients set up. Now, all

of these things will also be converted in this process

Now to begin the conversion process be, right here, in the Hardware configuration and then

select this button. Since this is P2000 Project you have the option to either convert to a

P3000 series or to the P1000 series. I am going to select the P1000 project conversion.

Now, once I select that you will see this dialog. Now for this example everything is

fairly straight forward other than the analog modules. The previous modules used in the

P2000 system where of 8 point type and in the P1000 system they are of 4 point type.

If I needed to keep all of these analog I/O I can right click on the original modules

and select Split original module. As you can see this takes the original 8 point modules

and splits them across 2 4 points each. But I was not using all 8 points so I will go

back to the 4 point modules by selecting restore. The good thing is, I can see that none of

the tags are actually used, as this Column is not checked, and if you look at this column

this gives you the option to delete the extra 4 tags on each module but since I have plenty

of memory leftover and this is a small project, I am going to go ahead and select to keep

them. So, I am going to press Ok. As soon as I do

so I can now see that all of my hardware has switched over to the P1000 series. Now, if

I look closer at the CPU, I can see that the Ethernet setup for My CPU is still there,

my Remote access is still setup and all of my EtherNet/Ip Clients are still there.

Now if I go in and look at my ladder code, I can see that all of my Tasks converted over.

One final check, let's compile our project, to verify. Press F8.

And I got an error message. Looks like I was using a LCD instruction and since the P1000

does not have a display on the CPU, this instruction will not work. Go ahead and hit this Locate

button and it will take you to the point of the error, in your ladder code. Now, I can

see here that the only instruction, in this Task, was this LCD instruction. Now, I can

delete the task or the instruction or I can take the whole task and move it down to the

Disabled task bin. Now, go ahead and save your Project as a New

Project and then you can go ahead and send it to your PLC. In just a few minutes we have

taken all of your hard work and was able to convert it to your new PLC effortlessly.

I hope you found this video helpful. And if you have any more questions please, feel free,

to comment below or call into our award-winning Tech Support team. Click on this This video

to see more of our many support options. Click on this link to see more of our many products

and solutions. And if you have liked what you saw here, please click here to subscribe

to our YouTube channel, for upcoming solutions. And Thanks Again

For more infomation >> How To Convert any Productivity project to any Productivity PLC - Duration: 4:24.

-------------------------------------------

Wort Guru - Level 930 (UPDATE: November 2017) - Lösung (Immer aktuell!) - Duration: 1:01.

For more infomation >> Wort Guru - Level 930 (UPDATE: November 2017) - Lösung (Immer aktuell!) - Duration: 1:01.

-------------------------------------------

Blue House welcomes U.S. President Trump - Duration: 2:16.

Trump's trip to Korea garnered huge media attention as it is the first state visit to

the nation by an American leader in more than 2 decades.

At the top office a massive welcoming ceremony awaited the VIPs.

For details we turn to our Hwang Hojun Involving plenty of pomp and protocol,...

it was the warmest welcome South Korea can give.

The official welcoming ceremony for the first sitting U.S. President to make a state visit

to South Korea in 25 years was held with all the formalities and conventions of a state

visit, displaying the highest honor and courtesy,... and also featuring both the traditional and

modern sides of South Korea.

U.S. President Donald Trump and First Lady Melania Trump entered the Blue House on Tuesday

afternoon, their cavalcade surrounded by traditional ceremonial guards.

A guard of honor and a military band made up of approximately 300 soldiers from South

Korean forces, a group of school children, and the first couple of South Korea greeted

the U.S. President and the First Lady.

And instead of any other ordinary march, the official Presidential Anthem of the U.S.,

"Hail to the Chief," was played in honor of President Trump as the two presidents entered

the Cheong Wa Dae grounds,... and "Mr. President," a song dedicated to President Moon, was played

upon their exit from the field after they inspected the troops as part of the welcoming

ceremony.

President Trump was not shy about expressing how much he was impressed.

The U.S. first couple left a message in the guest book that read,... quote "This is such

a great honor, thank you."

before entering the main building of the Blue House for the bilateral summit,... and even

expressed his gratitude before the meeting commenced.

(ENGLISH) "President Moon, I want to thank you so much

for that beautiful ceremony.

It doesn't get more beautiful than that.

I know the work that was put into it."

The two heads-of-state also enjoyed a promenade through the Blue House garden, and spared

some time to enjoy a cup of tea before their much anticipated joint press conference.

(STAND UP) Considering that President Trump is also the

first head of state to visit South Korea since President Moon's inauguration, and the delicate

time involving the alliance between Seoul and Washington, observers say the welcoming

ceremony was significant to herald a successful summit between the two leaders.

Hwang Hojun, Arirang News

For more infomation >> Blue House welcomes U.S. President Trump - Duration: 2:16.

-------------------------------------------

Dr Caroline Gorden, Senior Lecturer in Criminology and Criminal Justice at WGU - Duration: 4:42.

For more infomation >> Dr Caroline Gorden, Senior Lecturer in Criminology and Criminal Justice at WGU - Duration: 4:42.

-------------------------------------------

Data Privacy in the Digital Age" – Panel 4 - Duration: 47:10.

>> I'M PROUD TO INTRODUCE PANEL FOUR: FROM PATIENT TO PARTICIPANT, FROM SPECIMEN TO DATA,

PRIVACY ACROSS THE HEALTH LIFE CYCLE. PRIVACY RIGHTS IN HEALTHCARE WERE CONCEPTUALIZED

IN AN ERA FOCUSED ON THE PHYSICAL HARMS THAT MIGHT BEFALL AN INDIVIDUAL ACTING AS A PATIENT

OR RESEARCH PARTICIPANT. OVER TIME SOCIETY HAS BEGUN TO RECONCEPTUALIZE

STANDARDS FOR PRIVACY AND INFORMATION SHARING IN A DIGITAL AND SOCIAL MEDIA STAGE.

THIS PANEL WILL FOCUS ON PRIVACY NOT AT ONE MOMENT BUT A CONTINUUM AS PATIENT IS TRANSFORMED

TO PARTICIPANT TO BIOSPECIMEN TO DATA. OUR FIRST SPEAKER IS ANDREW G. SHUMAN, WHO

WILL BE PRESENTING PRIVACY FROM BEDSIDE TO LABORATORY. ANDREW G. SHUMAN IS AN ASSISTANT

PROFESSOR IN THE DEPARTMENT OF OTOLARYNGOLOGY - HEAD AND NECK SURGERY - AT THE UNIVERSITY

OF MICHIGAN MEDICAL SCHOOL. HE IS ALSO THE CHIEF OF THE ENT SECTION OF THE SURGERY SERVICE

AT THE VA ANN ARBOR HEALTH SYSTEM. HE SERVES AS CO-DIRECTOR OF THE PROGRAM IN CLINICAL

ETHICS AT THE CENTER FOR BIOETHICS IN SOCIAL SCIENCES IN MEDICINE.

HIS CURRENT RESEARCH INTERESTS EXPLORE ETHICAL ISSUES INVOLVED IN CARING FOR PATIENTS WITH

HEAD AND NECK CANCER AND IN MANAGING CLINICAL ETHICS CONSULTATIONS AMONG PATIENTS WITH CANCER.

HE'S A GRADUATE OF THE UNIVERSITY OF MICHIGAN MEDICAL SCHOOL AND THE UNIVERSITY OF MICHIGAN�S

COLLEGE OF LITERATURE, SCIENCE AND THE ARTS. NEXT WE WILL HAVE KAYTE SPECTOR?BAGDADY WHO

WILL BE PRESENTING DIGNITARY HARMS AND THE PRIVATIZATION OF DATA. KAYTE IS AN ASSISTANT

PROFESSOR IN THE DEPARTMENT OF OBSTETRICS AND GYNECOLOGY AT THE UNIVERSITY OF MICHIGAN

MEDICAL SCHOOL AND THE CHIEF OF THE RESEARCH ETHICS SERVICE IN THE CENTER FOR BIOETHICS

AND SOCIAL SCIENCES IN MEDICINE. SHE RECEIVED HER J. D. AND MASTERS OF BIOETHICS

FROM THE UNIVERSITY OF PENNSYLVANIA LAW SCHOOL AND UNIVERSITY OF PENNSYLVANIA SCHOOL OF MEDICINE

AND COMPLETED A RESEARCH FELLOWSHIP IN BIOETHICS AT MICHIGAN.

SHE IS A FORMER DRUG AND DEVICE ATTORNEY AND ASSOCIATE DIRECTOR OF THE PRESIDENTIAL COMMISSION

FOR THE STUDY OF BIOETHICAL ISSUES UNDER PRESIDENT OBAMA. ALSO MY OLD BOSS.

[LAUGHTER] OUR FINAL SPEAKER IS NICOLE STRAND WHO WILL

BE PRESENTING POWER AND PRIVACY IN DATA AND BIOSPECIMEN RESEARCH.

NICOLE STRAND EARNED HER J. D. AND MASTERS IN BIOETHICS AT THE UNIVERSITY OF PENNSYLVANIA.

SHE HAS WORKED AT THE FOOD AND DRUG ADMINISTRATION, LEGAL AID SOCIETY, DEPARTMENT OF VETERANS

AFFAIRS, UNIVERSITY OF PENNSYLVANIA�S OFFICE OF GENERAL COUNSEL, AND THE PRESIDENT'S BIOETHICS

COMMISSION. SHE IS CURRENTLY AN ASSISTANT PROFESSOR AND

ASSISTANT DIRECTOR OF RESEARCH AT TEMPLE MEDICAL SCHOOL�S CENTER FOR BIOETHICS, URBAN HEALTH,

AND POLICY. WELCOME.

[ APPLAUSE ] >> THANK YOU SO MUCH TO THE ORGANIZERS AND

TO HHS. IT'S TRULY A PRIVILEGE TO BE HERE.

I AM A CLINICIAN AND AN ETHICIST AND MY JOB OVER THE NEXT TEN MINUTES IS TO TELL A STORY

USING A PATIENT IN ORDER TO ILLUSTRATE HOW PRIVACY PLAYS OUT FROM THE BEDSIDE TO THE

SPECIMEN. I HAVE NO DISCLOSURES.

[LAUGHTER] SO WE�RE GOING TO START WITH A CASE.

OUR CASE INVOLVES A PATIENT NAMED MARK, AND, IN THIS PRIVACY CROWD, I'LL TELL YOU HIS ACTUAL

NAME IS NOT MARK, BUT IT'S IMPORTANT TO PUT A FACE AND PUT A NAME WHEN WE'RE HAVING THESE

CONVERSATIONS IN MY WORLD. SO MARK, LIKE MANY OF MY PATIENTS, COMES IN

WITH A LUMP IN HIS MOUTH THAT'S NOT HEALING AND IS DIAGNOSED WITH ADVANCED HEAD AND NECK

CANCER AND THE BEST WAY TO TREAT ADVANCED HEAD AND NECK CANCER OF THE TYPE THAT HE HAS

IS WITH A VERY AGGRESSIVE SURGERY WHERE WE REMOVE PART OF HIS TONGUE, JAW, AND LYMPH

NODES FROM HIS NECK AND TRANSPLANT PARTS FROM ELSEWHERE IN HIS BODY IN ORDER TO BUILD HIM

A NEW FACE AND A NEW TONGUE. SUFFICE IT TO SAY THIS IS A LOT FOR SOMEONE

TO HANDLE. WHEN WE HAVE THESE TYPES OF CONVERSATIONS MY GOAL, AGAIN, IS TO PAINT THE PICTURE OF

WHAT THAT ACTUALLY LOOKS LIKE IN PRACTICE. MARK IS A PRETTY ASTUTE GUY AND BASICALLY

SAYS, I GET IT, WE'RE READY. LET'S DO THIS. THERE'S NO DECISIONS. I'M HERE, YOU'RE TELLING

ME WHAT I HAVE AND LET'S GET THIS DONE. BUT IN REALITY, THERE'S ACTUALLY A FAIR NUMBER

OF QUESTIONS THAT WE NEED TO WORK THROUGH. SO THE FIRST ONES IN HIS HEAD ARE:

DO I LOOK FOR A SECOND OPINION? DO I TRUST THIS GUY? I'VE KNOWN HIM FOR HALF

AN HOUR NOW AND HE'S ABOUT TO PUT ME THROUGH SOMETHING THAT NO HUMAN BEING SHOULD EVER

HAVE TO BE PUT THROUGH. THIS IS ALSO A DIFFICULT TIME IN HIS LIFE.

HE JUST RESTARTED SMOKING, HE JUST GOT DIVORCED, HE IS SELF-EMPLOYED, AND ALL OF THOSE THOUGHTS

ARE GOING THROUGH HIS HEAD. AND THERE'S ALSO A TON OF QUESTIONS THAT WE

HAVEN'T EVEN GOTTEN TO YET, WHICH WE WILL OF COURSE , BUT WE DON'T HAVE THAT MUCH TIME.

REMEMBER THE CLOCK FOR THIS OPERATION STARTS NOW THAT I'VE DIAGNOSED HIM AND HE HAS ANYWHERE

FROM TWO TO FOUR WEEKS TO HAVE SURGERY. SO WHILE THERE'S SOME TIME, THERE'S NOT A

LOT OF TIME AND I NEED TO TALK TO HIM ABOUT WHETHER THE TRANSPLANT IN ORDER TO RECONSTRUCT

HIM SHOULD BE HARVESTED FROM DIFFERENT PARTS OF HIS BODY. THAT HAS DIFFERENT COMPLICATIONS

AND DIFFERENT RISKS AND BENEFITS. WE NEED TO TALK ABOUT THE ADJUVANT RADIATION

THAT HE IS LIKELY GOING TO NEED. CAN HE COMMUTE TO THE UNIVERSITY HOSPITAL FOR THAT OR STAY

LOCALLY IN THE COMMUNITY? AGAIN, PROS AND CONS. AND WHERE IS HE GOING TO RECOVER? HE

LIVES ALONE. THIS IS A LOT TO HANDLE. ALL OF THESE QUESTIONS REALLY NEED TO BE ADDRESSED

IN THE NEXT TWO TO FOUR WEEKS. SO, HOW DOES PRIVACY PLAY IN?

AND, AGAIN, IN THE CONTEXT OF WHAT THIS MAN IS GOING THROUGH, IT'S NOT UNREASONABLE FOR

HIM TO SAY, PRIVACY, ARE YOU KIDDING ME? WHAT ARE WE TALKING ABOUT?

WE'RE TALKING ABOUT TAKING MY TONGUE OUT, WE'RE NOT TALKING ABOUT PRIVACY. BUT OF COURSE

THIS AUDIENCE WELL KNOWS THAT PRIVACY IS A CONTINUUM.

THIS IS WHAT HE NEEDS TO GO THROUGH, AND I DON'T SHOW THESE FOR SHOCK VALUE, BUT SIMPLY

TO SHOW YOU THE MAGNITUDE AND THE VISCERAL NATURE OF WHAT WE'RE TALKING ABOUT HERE. WHEN

WE DO THESE OPERATIONS, IN ORDER TO FULLY INFORM SOMEONE OF WHAT THEY'RE SIGNING UP

FOR, IT'S IMPORTANT FOR THEM TO UNDERSTAND NOT ONLY THE MAGNITUDE BUT ALSO THE PRACTICALITY

OF IT BOTH UPSTREAM AND DOWN STREAM. SO AFTER THAT TUMOR IS REMOVED, WE HAVE OUR

DEFECT TO RECONSTRUCT, AND ALSO REMEMBER THAT I'M AN ACADEMIC RESEARCHER AND TRANSLATIONAL

ONCOLOGIST AS WELL AS CLINICIAN, AND WHAT THAT MEANS IS, THIS IS NOT JUST A SPECIMEN

TO BE HARVESTED, BUT RATHER THIS IS OUR MOST PRECIOUS RESOURCE FOR FUTURE PATIENTS SO PART

OF MY JOB IS TO ENGAGE MARK INTO UNDERSTANDING WHY I WANT TO TAKE A LITTLE PIECE OF THAT

TUMOR AND STUDY IT. SOME OF THE STUDIES THAT WE WOULD LIKE TO DO IN OUR LABORATORY CANNOT

BE DONE AFTER THE FACT; WE NEED FRESH TUMOR TISSUE AND CONSENT UPFRONT IN ORDER TO MOVE

FORWARD WITH WHAT WE WOULD LIKE TO DO. SO WITH THAT SAID, THERE'S A NUMBER OF RESEARCH

STUDIES THAT MARK NEEDS TO CONSIDER RIGHT NOW.

NEOADJUVANT CHEMO THERAPY IS AN OPTION FOR HIM; WHETHER OR NOT WE ENROLL HIM ON A PRECISION

ONCOLOGY PLATFORM, EITHER INTERVENTIONAL OR OBSERVATIONAL; WHAT, IF ANYTHING, HE WANTS

TO DO FOR A REGISTRY OR BIOSPECIMEN DATA BANK STANDPOINT; AND MANY OTHERS WE MIGHT CONSIDER

AS WELL. SO AGAIN IN OUR TWO TO FOUR WEEKS THERE IS

A LOT TO CROSS, AND PRIVACY IS, BY ALL MEANS, A COMPONENT OF THIS, BUT, BY NO MEANS, THE

PRIMARY COMPONENT IN HIS EYES. SO WHY DOES THIS MATTER?

BECAUSE THESE DECISIONS APPLY TO MARK NOW AND HE HAS TWO TO FOUR WEEKS TO MAKE THESE

DECISIONS, NOT THE REST OF LIFE SPAN OF THE DATA THAT MIGHT BE GENERATED.

SO, HOW DOES ANYONE PROCESS THIS? THE EASY OUT, OF COURSE, IS TO SAY, WELL, NO ONE CAN

AND THAT'S WHY YOU GO TO AN EXPERIENCED CENTER, BUT THAT'S NOT GOOD ENOUGH.

WHEN I PUT MY ETHICS HAT ON, OF COURSE, THAT'S CERTAINLY NOT GOOD ENOUGH AND ONE OF MY JOBS,

OF COURSE, IS TO HAVE A VERY CLEAR, COGENT CONVERSATION WITH THIS MAN ABOUT WHAT HE'S

FACING, WHAT CHOICES HE HAS, WHAT TRADE-OFFS THERE ARE AND WHAT ARE THE EXPECTED CONSEQUENCES

THEREOF. AS HIS SURGEON, I THINK OF THIS IN A SURGICAL

WAY. SO MY JOB, TRANSCENDS THIS ONE TIME INTERACTION,

BUT IS MUCH MORE DRIVEN BY THE VIRTUE OF WHAT I DO, THE FACT THAT THERE ARE INDEED HARMS

-- WE'VE SEEN PICTURES OF WHAT THE HARMS ARE -- BUT OF COURSE THEY'RE PROPORTIONAL TO THE

INTENDED BENEFIT, AND FINALLY THE POWER DYNAMIC. THERE IS A CLEAR UNEQUAL POWER DIVIDE BETWEEN

ME AND HIM, ESPECIALLY WHEN I'M WEARING MY HAT AS A SURGEON, BUT ALSO MY HAT AS A RESEARCHER.

SO HOW WE DEAL WITH THOSE COMPETING INTERESTS FROM THE STANDPOINT OF A PATIENT WHO IS SICK

AND SCARED AND TERRIFIED AND VULNERABLE, IS VERY DIFFERENT FROM HOW WE MIGHT THINK OF

IT FOR A CONSUMER WHO MIGHT NOT BE FACING THESE CHOICES.

SO, HOW DO WE DEAL WITH THAT? WELL, BOSK HAS A BEAUTIFUL QUOTE ON THIS WHICH BASICALLY

IS THE FACT THAT WHEN YOU LEARN HOW TO BE A SURGEON, LEARNING HOW TO OPERATE IS ACTUALLY

A VERY SMALL PART OF WHAT I DO. WHAT I LEARN HOW TO DO IS HELP PEOPLE THROUGH THE MOST

VULNERABLE TIMES OF THEIR LIVES AND REALLY TAKE AN ETHICAL APPROACH TO THAT DECISION

MAKING. AND THAT'S TRUE NOT JUST BECAUSE I'M AN ETHICIST,

BUT JUST THROUGH THE VIRTUE OF THE TRAINING THAT WE GO THROUGH.

AND PRINCIPLISM OF COURSE HAS A VALUE, BUT TO AN ETHICIST IT'S INSUFFICIENT. AND WHAT

I MEAN BY THAT IS HARMS ARE RELATIVE, THERE'S CLEARLY A HARM ASSOCIATED WITH THE SURGERY

ITSELF. THERE'S CLEARLY A HARM OF CHOOSING OTHER ALTERNATIVES,

BUT THERE'S ALSO A HARM OF DATA BREACHES, THERE'S A HARM OF THE UNINTENDED CONSEQUENCES

OF WHATEVER GENETIC INFORMATION WE MIGHT OBTAIN THROUGH THE COURSE OF HIS RESEARCH, AND THERE'S

HARMS OF HIM BEING ON EITHER A TUMOR REGISTRY OR A CANCER DATABASE OR HAVING HIS SPECIMEN

STORED IN PERPETUITY IN OUR LABORATORY. SO HOW DO WE THINK ABOUT THIS.

WE NEED TO PERSONALIZE THIS, AND THAT'S AN EASY THING TO SAY, BUT IN PRACTICE IT REALLY

TAKES TIME AND WHY THIS IS TRULY A PROCESS THAT, IN ALL HONESTY, I FEEL THAT THE NAVIGATION

OF GUIDELINES AND REGULATORY COMPONENTS DOESN'T SUFFICIENTLY ADDRESS AND I'LL TALK ABOUT WHY

IN THE NEXT FEW SLIDES. SO WHAT IS MARK GOING THROUGH?

AGAIN, I WANT TO BE PRAGMATIC, LET'S PAINT A PICTURE OF MARK'S EXPERIENCE: HE COMES IN

TO MEET WITH ME, I HAVE 45 MINUTES SCHEDULED TO MEET WITH HIM TO AT LEAST START THIS CONVERSATION.

HE LIVES A FEW HOURS AWAY AND GETTING HERE IS NOT EASY BECAUSE HE HAS TO WORK AND BECAUSE

GAS ISN'T CHEAP. SO WHAT THAT MEANS IS WE HAVE TO BUNDLE HIS

APPOINTMENTS, AND, AGAIN, WE HAVE A TWO-FOUR WEEK WINDOW. ON HIS SECOND VISIT HE IS COMING

IN, HE IS MEETING WITH THE RADIATION ONCOLOGIST TO CONSIDER THAT AS AN ALTERNATIVE, WHICH

IS APPROPRIATE. HE IS MEETING WITH A SPEECH AND LANGUAGE PATHOLOGIST WHO IS GOING TO HELP

REHABILITATE HIM AFTER THE SURGERY. HE IS MEETING WITH THE PREOPERATIVE TEAM TO MAKE

SURE THAT HE IS GOOD TO GO. HE IS HAVING SMOKING CESSATION COUNSELING, ANOTHER KEY PART OF

WHAT WE DO. AND OF COURSE MEETING WITH MY RESEARCH COORDINATOR TO AT LEAST START NAVIGATING

WHICH, IF ANY, OF THE RESEARCH PROTOCOLS HE WOULD BE INTERESTED IN ENROLLING IN.

SO, THE THIRD APPOINTMENT, COME BACK AND TALK TO ME AGAIN, WHICH, AGAIN, IS IMPORTANT BUT

ONLY PART OF IT: TALKING TO MY CLINICAL CHAIR NAVIGATORS, TO MY NURSES, TO MY SURGERY SCHEDULERS

AND SO ON AND SO ON AND SO ON. WHAT YOU CAN SEE IS THAT THIS IS AN ONSLAUGHT

AND AN AVALANCHE OF INFORMATION THAT MARK IS PROCESSING AT BY FAR THE MOST VULNERABLE

TIME OF HIS LIFE. I THINK IT'S IMPORTANT FOR US TO HAVE A VISUAL

OF WHAT PAPERS ARE GOING TO BE PUT IN FRONT OF MARK.

PAPER NUMBER ONE IS HIS GENERAL CONSENT TO CARE AND HIPAA DISCLOSURE.

PAPER NUMBER TWO, IS ALLOWING ME TO OBTAIN RECORDS FROM ELSEWHERE IN ORDER TO MAKE SURE

THAT WHATEVER'S BEEN DONE ALREADY I HAVE, WHICH AGAIN HAS A VERY CLEAR PRIVACY IMPLICATION.

PAPER NUMBER THREE, IS CONSENT FOR ME TO TAKE PICTURES, AGAIN FOR MEDICAL PURPOSES AND EDUCATION,

WHICH OF COURSE IS HIS PREROGATIVE OR NOT, BUT REQUIRES YET ANOTHER PIECE OF PAPER WITH

A PRIVACY IMPLICATION. PAPER NUMBER FOUR IS BLOOD TRANSFUSION CONSENT.

PAPER NUMBER FIVE IS ONE OF THE TWO OPERATIVE CONSENTS FOR THE SURGERY ITSELF WHICH WE HAVE

TO GO THROUGH. AND THEN PAPERS NUMBER 4, 5, 6, 7, 8, 9, AND

TEN ARE HIS ADVANCE DIRECTIVE, WHICH AGAIN IS A CRITICAL THING FOR US TO CONSIDER BEFORE

SURGERY. BECAUSE I ONLY HAVE TEN MINUTES, I CAN'T EVEN SHOW THE RESEARCH DOCUMENTS,

SO YOU CAN IMAGINE THAT THOSE WILL MULTIPLY BY A FACTOR OF A HUNDRED, THE NUMBER OF PIECES

OF PAPER WITH PRIVACY IMPLICATIONS THAT MARK NEEDS TO PROCESS OVER THE COURSE OF HIS TRAJECTORY

OF CARE. SO WHAT DOES THIS ALL MEAN?

WHAT I WOULD ARGUE IS THAT THE REGULATORY COMPONENTS OF THIS REALLY PALE IN COMPARISON

TO WHAT MARK IS ACTUALLY EXPERIENCING DURING THIS PERIOD OF TIME IN HIS LIFE, AND THAT

PRIORITIES CHANGE, SO HIS INTEREST IN PRIVACY MIGHT WELL BE IMPORTANT TO HIM -- AND VERY

IMPORTANT -- TO HIM NEXT YEAR WHEN HE'S HEALED AND I'M TAKING CARE OF HIM.

SO, WHAT ARE MY CONCLUSIONS? ESSENTIALLY THAT THE PATIENT EXPERIENCE, WHAT

I ILLUSTRATED WITH MARK HERE, IS MY REALITY EVERY DAY, AND I DEAL WITH HUNDREDS OF MARKS

ON A REGULAR BASIS. AND THE CHALLENGE THAT I'M FACED WITH IS TAKING

THE REGULATORY COMPONENT AND THE LANDSCAPE THAT HAS COME OUT OF THIS BUILDING, AS WELL

AS MANY OTHER PLACES, AND APPLYING IT TO AN INDIVIDUAL WHO IS SICK AND SCARED.

CLINICAL AND RESEARCH INTERESTS MAY OVERLAP, BUT ARE CLEARLY DIFFERENT AND I WOULD ARGUE

THAT WE ARE--THAT OUR PATIENTS ARE VULNERABLE AND OUR JOB, NOT JUST AS CLINICIANS, BUT AS

A HEALTHCARE COMMUNITY, IS TO PROVIDE THIS PERSON WITH THE PROTECTIONS NECESSARY IN ORDER

BOTH TO SATISFY HIS NEEDS AS WELL AS THOSE OF THE RESEARCH ENTERPRISE. THANK YOU.

[APPLAUSE] >> HI, JUST A POINT OF CLARIFICATION WHILE

MY SLIDES COME UP TO VICTORIA'S INTRODUCTION OF ME, I'M NOT HER OLD BOSS, I'M HER [WHISPERING

] FORMER BOSS. [LAUGHTER]

I DON'T HAVE DISCLOSURES EITHER. TO GIVE YOU A QUICK OVERVIEW OF WHAT I AM GOING TO TALK

ABOUT TODAY, I AM GOING TO MAKE THREE OBSERVATIONS AND ONE PROPOSAL, SO I�M GOING DO IT QUICKLY.

SO MY OBSERVATION NUMBER ONE IS THAT BIOSPECIMENS AND HEALTH DATA ARE GOVERNED BY METHOD OF

PROCUREMENT, BUT OFTEN END UP BEING USED IN THE SAME WAYS.

THIS IS NOT EARTH SHATTERING, WE KNOW THIS, BUT THAT'S HOW WE SORT OF SILO OUR DATA REGULATION.

I HAVE THREE SILOS BECAUSE I THINK OF THREE MAIN SILOS OF HOW DATA COME INTO THE SYSTEM

AND THAT�S DIRECT TO CONSUMERS, SO THE DTC INDUSTRY, THROUGH OUR PATIENTS, AND THROUGH

RESEARCH. SO JUST TO GO OVER A LITTLE BIT MORE ABOUT

HOW THESE SEPARATE AVENUES ARE REGULATED. IN THE DTC INDUSTRY, THROUGH 23 AND ME, AS

WE HEARD ABOUT A LITTLE BIT THIS MORNING, THESE ARE LARGELY REGULATED BY CONTRACTS.

SO EVERYBODY WHO COMES IN THROUGH 23 AND ME, AGREES TO THE TERMS AND CONDITIONS; THEY AGREE

TO PRIVACY STATEMENT; AND THEN LATER ALSO IF YOU WANT TO ENROLL IN RESEARCH, YOU AGREE

TO A RESEARCH CONSENT -- ALTHOUGH THAT'S BEST PRACTICE IN THE INDUSTRY, AND CERTAINLY NOT

UNIFORM. A MORE RECENT EXAMPLE IS RAVEN'S DNA DAY, WHICH I DON'T KNOW IF ANY OF YOU

GUYS HEARD ABOUT, THEY WERE GOING TO ACTUALLY START OFFERING DTC GENETIC TESTING AT A FOOTBALL

STADIUM. THEY WERE TWEETING THAT YOU COULD JUST SWAB YOUR CHEEK AND DROP IT IN TRASH

BARRELS AT THE STADIUM. THE TERMS AND CONDITIONS THAT THEY WERE OFFERING WERE 12 SINGLE-SPACED

PAGES THAT THEY WERE GOING TO HAND OUT TO THE FOOTBALL FANS. JUST A QUICK SNIPPET FORM

THOSE TERMS AND CONDITIONS: YOU HEREBY GRANT AND AGREE TO GRANT US A WORLDWIDE

NON-EXCLUSIVE, PERPETUAL, IRREVOCABLE, ROYALTY-FREE, FULLY PAID-UP, TRANSFERABLE RIGHT AND LICENSE,

WITH THE RIGHT TO SUBLICENSE THROUGH MULTIPLE TIERS, TO COPY, EDIT, MODIFY, ADAPT, PUBLISH,

TRANSMIT, DISTRIBUTE, PREPARE DERIVATIVES WORKS OF, PERFORM, DISPLAY, USE, AND OTHERWISE

EXPLOIT IN ANY MANNER, YOUR CONTENT�. SO JUST A FREE PIECE OF LEGAL ADVICE, PEOPLE

DON'T LIKE THE WORD EXPLOIT. [LAUGHTER] BUT THE POINT OF THIS IS THAT, I MEAN THESE

DATA ARE COMING IN VIA LARGELY CONTRACT. AND IF THAT NOTION EXCITES YOU SO MUCH YOU

WANT TO READ 30,000 WORDS ABOUT IT, THE CITE TO MY ARTICLE IS RIGHT THERE. [LAUGHTER]

I'M NOT GOING TO BELABOR HOW DATA CAN COME IN VIA PATIENTS BECAUSE DOCTOR SHUMAN COVERED

THAT REALLY WELL FOR US, BUT THERE ARE THREE MAIN BIOSPECIMEN CASES AS WE KNOW IF YOU ARE

A BIOSPECIMEN WONK LIKE ME: MOORE VERSUS REGENTS, GREENBERG VERSUS MIAMI, AND CATALONA. JUST

A QUICK SUMMARY OF ALL THREE: BASICALLY BIOSPECIMENS THAT ARE TAKEN FROM YOU, AS LONG AS THEY ARE

DEIDENTIFIED, ARE NOT YOURS. THEY ARE NOT YOUR PROPERTY; YOU DON�T HAVE AN INTEREST

IN THEM. IF THEY�VE BEEN ABANDONED, THEY�VE BEEN DONATED, THE ANALYSIS DIFFERS A LITTLE,

BUT THE POINT IS THAT AS LONG YOU DON'T HAVE A DIRECT PRIVACY INTEREST IN THEM BECAUSE

THEY'RE IDENTIFIED, THEY'RE NOT YOURS ANYMORE ONCE THEY'VE BEEN TAKEN AWAY.

THEY'RE JUST TRASH AND CURRENTLY THAT INCLUDES EVEN IF WE ARE GOING TO SEQUENCE THEM, BECAUSE

GENETIC SEQUENCING HAS NOT YET BEEN RECOGNIZED FORMALLY AS ONE OF THE 18 HIPAA IDENTIFIERS.

THE THIRD AVENUE DATA ARE COMING IN THROUGH IS RESEARCH. SO WHEN SOMEONE ACTUALLY DOESN'T

COME IN AS A PARTICIPANT, LIKE DR. SHUMAN WAS SAYING, THAT WAS AS A PATIENT WHO WAS

CONVERTED TO A PARTICIPANT, BUT SOMEONE WHO COMES, FOR EXAMPLE, TO THE UNIVERSITY OF MICHIGAN,

JUST TO DO RESEARCH. THIS IS FROM THE NEW REGULATION, UNDER THE

NEW REGIME, WHEN AND IF IT BECOMES EFFECTIVE, A HUMAN SUBJECT THAT WILL THEN HAVE TO GO

THROUGH EITHER BROAD CONSENT OR FORMAL CONSENT AND IRB APPROVAL WILL INCLUDE A PARTICIPANT

THAT WE ACTUALLY HAVE SOME SORT OF DIRECT ENGAGEMENT WITH OR THEIR IDENTIFIABLE DATA

OR BIOSPECIMENS. AND THEN ALSO NOTE THAT ACTUALLY UNDER THE

NEW REGS, WHEN AND IF THEY BECOME EFFECTIVE, YOU WILL--THE HHS PEOPLE LIKE THAT -- YOU

WILL HAVE TO ACTUALLY DISCLOSE TO PEOPLE WHO COME IN AS PARTICIPANTS THAT THEIR SPECIMENS

AND DATA MAY BE DEIDENTIFIED AND USED FOR FUTURE RESEARCH.

OFTEN WHEN WE COME IN AS PATIENTS THERE IS A LINE IN OUR INFORMED CONSENT FORM, ONE OF

THOSE MANY INFORMED CONSENT FORMS THAT HE SHOWED US, THAT SAYS, OH BY THE WAY, BUT CURRENTLY

THAT'S BEST PRACTICE, YOU DON'T HAVE TO DO IT IF YOU'RE NOT USING IDENTIFIED INFORMATION

AND AGAIN ACROSS THE INDUSTRY IT�S VARIED. SO, THESE ARE THE WAYS THESE DATA ARE COMING

IN, THEY'RE COMING IN THROUGH DIFFERENT METHODS BUT THEN THEY'RE ENDING UP GETTING MIXED IN

THE END. AS AN EXAMPLE, KATE BLACK TOLD US ABOUT THIS MORNING SOME OF THE PARTNERSHIPS

THAT PRIVATE COMPANIES ARE DOING WITH PUBLICLY FUNDED RESEARCHERS -- SO THIS IS THE STANFORD

EXAMPLE THAT SHE USED -- SO DATA ARE GOING FROM PRIVATE INDUSTRY TO ACADEMIA, AND THEN

DATA AND SAMPLES ARE ALSO GOING FROM ACADEMIA BACK TO PRIVATE INDUSTRY.

MANY OF OUR PUBLIC BIOBANKS AND DATA BANKS ACTUALLY END UP COMMERCIALIZING SOME OF THEIR

SPECIMENS AND DATA AND SELLING THEM TO PRIVATELY FUNDED INDUSTRY TO MAKE MONEY TO SUPPORT THEIR

BIOBANK BECAUSE ACTUALLY ONE OF THE NUMBER ONE CHALLENGES OF BIOBANKS IS ACTUALLY THEIR

OWN FUNDING. SO OBSERVATION NUMBER TWO, WHILE OUR BIOSPECIMENS

AND DATA ARE GOVERNED BY METHOD OF PROCUREMENT, WHAT CONTRIBUTORS ACTUALLY CARE ABOUT IS USE.

AND ETHIMI MADE THIS POINT TOO, WHICH IS A GOOD ONE, AND THIS IS FROM FRANKENSTEIN. [LAUGHTER]

WE KNOW FROM PAST EMPIRICAL WORK THAT WHAT PEOPLE CARE ABOUT IS--YOU KNOW PEOPLE EXPECT

TO BE ASKED. THIS IS RESEARCH COMING FROM DR. RESHMA JAGSI, WHO IS THE DIRECTOR OF OUR

CENTER FOR BIOETHICS AT THE UNIVERSITY OF MICHIGAN. SHE FOUND IN HER CANCER PATIENT

POPULATION THAT FAIRLY LARGE MINORITY OF PEOPLE ACTUALLY THINK IT'S NECESSARY TO OBTAIN SPECIFIC

RESEARCH CONSENT EVEN FOR SECONDARY RESEARCH AND THOSE NUMBERS GO UP OFTEN BASED ON RACIAL

DEMOGRAPHICS AS WELL AS EDUCATION. PEOPLE WANT TO KNOW EVEN IF YOU'RE ACCESSING

THEIR DEIDENTIFIED MEDICAL INFORMATION, SO AGAIN, NOT NECESSARILY LEGALLY REQUIRED BUT

PEOPLE STILL WANT TO KNOW. NINE PERCENT OF PEOPLE ARE UNCOMFORTABLE WITH THE UNIVERSITY

RESEARCHERS ACCESSING IT AND IT GOES UP DEPENDING ON WHAT KIND OF INDUSTRY.

AND THEN ALSO COMING OUT FROM OUR ASSOCIATE DIRECTOR AT THE CENTER FOR BIOETHICS, DR.

RAYMOND DE VRIES. HE AND DR. KIM DID RESEARCH ON THE CONCEPT OF NON-WELFARE INTEREST -- IF

SOMEONE DOESN'T HAVE PRIVACY INTEREST OR PERSONAL INTEREST IN REMOVAL, THEY MIGHT STILL HAVE

THESE COMPLICITY INTERESTS IN WHAT HAPPENS WITH THEIR BIOSPECIMENS. THEY FOUND THAT WHILE

THE MAJORITY OF PEOPLE SAID SURE I�LL AGREE TO BROAD CONSENT, DO WHATEVER YOU WITH THE

SPECIMEN, WHEN THEY ACTUALLY WENT THROUGH SEVEN CONTROVERSIAL RESEARCH PROTOCOLS, 70%

OF PEOPLE CHANGED THEIR MIND AND SAID OH BUT NOT THAT.

LAST THERE'S THIS COMMERCIALIZATION EFFECT WHICH HAS ALSO BEEN ALLUDED TO, THE FACT THAT

PEOPLE ARE LESS LIKELY TO DONATE IF THEY THINK OR KNOW THAT THEIR DATA OR SPECIMENS ARE GOING

TO COMMERCIALIZED BECAUSE THEY THINK THE BENEFITS WILL BE LESS PUBLICLY ACCESSIBLE OR THAT PRIVATE

RESEARCHERS ARE LESS BENEVOLENT. THIS IS NEW RESEARCH THAT DR. SHUMAN IS A

CO-AUTHOR ON, AS WELL AS SOME OF OUR OTHER COLLEAGUES, AND WE FOUND THAT, AS PAST RESEARCH

HAS FOUND, BUT WE WERE SETTING A BASELINE, MOST PEOPLE DON'T FEEL LIKE THERE IS AN ETHICAL

DUTY TO PARTICIPATE IN RESEARCH. ALMOST 70% BELIEVE NOTIFICATION IS IMPORTANT -- WE DESIGNED

BEFORE THE FINAL REGS CAME OUT AND IT IS ALSO GOING TO BE LEGALLY REQUIRED. BUT THE VAST

MAJORITY OF PEOPLE ARE ACTUALLY UNCOMFORTABLE WITH THE UNIVERSITY HOSPITALS COMMERCIALIZING

THEIR BIOSPECIMENS, AS MANY DO. WE DID PRINCIPAL COMPONENT ANALYSIS AND RAN

A LOT OF VARIANTS, BUT ONE OF THE ONES WE FOCUSED ON WAS ALTRUISM. WE FOUND THAT IF

YOU SCORED HIGHER ON OUR ALTRUISM SCALE, YOU WERE MORE LIKELY TO BELIEVE THAT NOTIFICATION

IS IMPORTANT, AND IF YOU SCORED LOWER ON OUR ALTRUISM SCALE, YOU WERE MORE UNCOMFORTABLE

WITH PEOPLE USING YOUR BIOSPECIMENS TO MAKE MONEY. UNDER THE NEW COMMON RULE PROTECTIONS,

NOTIFICATION OF FUTURE COMMERCIALIZATION IS GOING TO BE LEGALLY REQUIRED AND EVEN UNDER

THE BROAD CONSENT MODEL IF YOU�RE USING IDENTIFIED SPECIMENS.

MY THIRD OBSERVATION IS THAT BY DISCLOSING THIS MINIMUM NECESSARY UNDER THE NEW HUMAN

SUBJECTS RESEARCH REQUIREMENTS REGARDING COMMERCIALIZATION, WE MIGHT UNNECESSARILY BE DISINCENTIVIZING

CONTRIBUTION TO RESEARCH. SO, WHAT DO I MEAN BY THAT? RESEARCHERS SHOULD

POTENTIALLY � THEY NEED TO DISCLOSE COMMERCIAL INTEREST IN DONATED SPECIMENS, BOTH BECAUSE

THEY ARE GOING TO BE LEGALLY REQUIRED TO DO SO AND ETHICALLY WE KNOW THAT PEOPLE WANT

TO KNOW THAT INFORMATION. BUT THAT THEY SHOULD ALSO DISCLOSE THE INTENDED USE OF THOSE PROFITS

AS A WAY OF POTENTIALLY REINVIGORATING ALTRUISTIC MOTIVATIONS FOR DONATING TO RESEARCH.

SO, OF COURSE, IF YOU�RE GOING TO USE THE MONEY THAT YOU�RE MAKING FROM COMMERCIALIZATION

TO GO TO HAWAII OR TO BUY YOURSELF NEW OFFICE FURNITURE, YOU�RE PROBABLY NOT GOING TO

ACCOMPLISH THAT GOAL, BUT INSOFAR AS YOU�RE REINVESTING THAT MONEY BACK INTO RESEARCH

OR YOU�RE RUNNING YOUR BIOBANK, THESE ARE THINGS THAT MIGHT VERY WELL BE WORTH DISCLOSING.

IN CONCLUSION, CURRENTLY WE GOVERN SPECIMENS AND HEALTH DATA BY PROCUREMENT BUT THEY OFTEN

END UP GETTING USED IN THE SAME WAYS AND IT IS THIS USE THAT THE CONTRIBUTORS ARE ACTUALLY

CONCERNED ABOUT. ALSO WE REALLY NEED TO BE MOVING TOWARDS UNIFORM

STANDARDS OF DISCLOSURE ACROSS THE DTC, CLINICAL AND RESEARCH CONTEXT BECAUSE OF THIS MIXING.

IT DOESN'T MAKE ANY SENSE TO REGULATE THINGS DIFFERENTLY BY HOW THEY COME IN. IF I COME

IN ONE DAY AS A PATIENT AND YOU TAKE MY BLOOD AND THE NEXT DAY AS A PARTICIPANT AND YOU

TAKE MY BLOOD, I STILL FEEL THE SAME WAY ABOUT HOW YOU'RE USING MY BLOOD.

AND THEN LAST, IF SPECIMENS AND DATA MAY BE COMMERCIALIZED, THAT DISCLOSURE SHOULD INCLUDE

THE PLANNED USE OF PROFIT. THE FIRST PART IS LEGALLY REQUIRED, THE SECOND PART ISN'T,

BUT WE'RE RECOMMENDING IT AS WAY TO BOTH FULLY ENABLE PARTICIPANT AUTONOMY, SO THEY GET THE

FULL SPECTRUM OF WHAT'S ACTUALLY GOING TO HAPPEN WITH WHAT THEY'RE CONTRIBUTING AS WELL

AS RE-ENACT THESE ALTRUISTIC MOTIVATIONS IF APPLICABLE. THANK YOU.

[APPLAUSE] >> KAYTE IS MY OLD BOSS TOO, SO GREAT TALK

KAYTE. [LAUGHTER] I�M GLAD ANDY ALREADY USED THE WORD POWER

AND HE ALSO PUT UP A BUNCH OF REALLY GROSS TONGUE PICTURES SO HOPEFULLY MINE WILL BE

MORE PLEASANT. [LAUGHTER] I AM GOING TO TALK TODAY ABOUT WHY WE THINK

PRIVACY IS ONE OF THE BIGGEST WE AS BIOETHICISTS AND POLICYMAKERS CHOOSE TO FOCUS ON WHEN WE

THINK ABOUT THIS KIND OF RESEARCH THAT WE HAVE BEEN TALKING ABOUT ALL DAY � BIOSPECIMENS,

BIG DATA, GENOMICS, PMI, ETC. AND I AM GOING TO CHALLENGE THE NOTION THAT PRIVACY SHOULD

BE OUR PRIMARY CONCERN. I REALIZE THAT I�M DOING THAT AT A PRIVACY CONFERENCE, BUT BEAR

WITH ME. I�LL ARGUE THAT EMPIRICALLY AND NORMATIVELY HEALTH DISPARITIES AND HEALTH

INEQUITY ARE ACTUALLY OUR BIGGEST BIOETHICAL ISSUE AND THOSE ARE THE THINGS WE NEED TO

BE FOCUSED ON AND SO WE SHOULD REFRAME OUR QUESTIONS AND USE A NEW RUBRIC TO ANSWER THEM.

I AM GOING TO START BY SAYING THAT THE VERY PEOPLE IN POWER WHO RUN PMI AND BIG DATA TYPE

STUDIES HAVE ALWAYS CLAIMED THAT ONE OF THE GOALS OF THIS KIND OF RESEARCH IS TO MITIGATE

OR ALTOGETHER ELIMINATE HEALTH DISPARITIES. IF YOU WORK IN THIS SPACE, I�M SURE YOU

HAVE SEEN THESE QUOTES ALL OVER THE PLACE WHICH IS WHY I DIDN'T PICK ONE TO PUT UP.

WHEN WE THINK ABOUT THIS KIND OF RESEARCH, I WOULD LIKE TO ARGUE THAT WHEN WE FOCUS ON

PRIVACY WE MAY BE DISTRACTING OURSELVES FROM SOMETHING DEEPER AND MORE INSIDIOUS ABOUT

THIS RESEARCH AND EITHER WILLFULLY OR IGNORANTLY BLIND TO SOME BIGGER, BROADER ISSUES. SO WHY

IS PRIVACY ONE OF THE BIG THINGS WE FOCUS ON? OF COURSE, THE REASONS FOR THAT ARE OBVIOUS

AND WE'VE HEARD THOSE REASONS ALL DAY LONG. THIS KIND OF RESEARCH IS UNPRECEDENTED AND

IT'S GETTING BIGGER AND BIGGER. IT�S CLEAR THAT THE SHEER AMOUNT AND VASTNESS OF THE

DATA AND TISSUE AND INFORMATION ABOUT PEOPLE THAT WE NOW HAVE ACCESS TO IS ALMOST INCONCEIVABLY

LARGE. THERE ARE DOZENS OF STUDIES SHOWING HOW BIG DATA CAN BE EXPLOITED TO REALLY INVADE

PEOPLE'S PRIVACY AND THAT YOU CAN NOW IDENTIFY INDIVIDUALS FROM THEIR GENOMIC SEQUENCE ALONE

AND YOU CAN PIECE TOGETHER COUPLE PIECES OF AGGREGATE DATA FROM THE INTERNET AND FIGURE

OUT WHAT SOMEONE HAD FOR BREAKFAST THAT MORNING. SO THE PRIVACY CONCERNS ARE REAL AND THEY'RE

CERTAINLY NOTHING TO SCOFF AT, BUT I THINK IT'S FAIR TO SAY THAT WE'VE ACCEPTED THOSE

PRIVACY RISKS FOR THE MOST PART BECAUSE OF THE TREMENDOUS PROMISE AND POTENTIAL BENEFIT

OF THIS KIND OF RESEARCH. SO TRADITIONAL BIOETHICS, AS YOU KNOW, INVOLVES

A BALANCING OR WEIGHING OR, TO USE COMMISSION PARLANCE, RECONCILING, OF COMPETING VALUES.

WE�VE DECIDED AS A SOCIETY, MORE OR LESS, THAT WE�RE WILLING TO TRADE OFF SOME LEVEL

OF PRIVACY RISK ASSUMING THAT SOME PEOPLE DO SOME MODICUM OF THING TO PROTECT US AGAINST

THAT RISK FOR THE POTENTIAL BENEFITS, THAT�S WHAT THE TRADE OFF IS.

WHAT I WANT TO CHALLENGE IS WHETHER THAT WEIGHING IS APPROPRIATE WHEN WE THINK ABOUT THE COMMUNITY

WHOSE PRIVACY IS AT RISK AND WHETHER THOSE PEOPLE ARE GOING TO BE THE ONES WHO WILL ACTUALLY

BENEFIT FROM THE FRUITS OF THE RESEARCH, RIGHT?

HENRIETTA LACKS IS THE EXAMPLE THAT COMES UP WHEN YOU THINK ABOUT THAT. SHE IS AN APT

ANALOGY. WE�RE TALKING ABOUT SOMETHING DIFFERENT OBVIOUSLY IN OUR CURRENT CONTEXT WITH BIG

DATA, BUT IF YOU THINK ABOUT WHAT SHE AND HER FAMILY SACRIFICED IN TERMS OF THEIR INVASION

OF PRIVACY AND THEN THINK ABOUT WHO BENEFITED FROM THE FRUITS OF THAT, OBVIOUSLY LOTS AND

LOTS OF PEOPLE BENEFITED HELA CELLS ARE USED ALL OVER THE WORLD.

THEY�VE LED TO AMAZING MEDICAL BREAKTHROUGHS, SO WE'RE HAPPY ABOUT THAT, BUT WE LOOK BACK

ON THIS CASE AND WE ALL AGREE THAT SOMETHING ABOUT IT FEELS ICKY, SOMETHING ABOUT IT FEELS

EXPLOITIVE AND NOT QUITE RIGHT ABOUT THE FACT THAT HENRIETTA DIDN'T SHARE IN ANY OF THOSE

BENEFITS. NEITHER DID HER FAMILY, BUT SHE WAS THE ONE WHOSE BODY AND BODY PARTS. IN

OUR CURRENT CONTEXT, HERE IS WHAT I WORRY ABOUT.

WE SAY WE WANT TO USE BIG DATA TO ELIMINATE HEALTH DISPARITIES AND THAT REQUIRES US TO

COLLECT THE DATA. WE NEED TO COLLECT THE DATA, WE NEED TO COLLECT THE DNA FROM MORE DIVERSE

COMMUNITIES THAN EVER BEFORE AND I'M NOT ARGUING THAT WE SHOULDN'T TRY TO GET ACCESS TO IT,

BUT ULTIMATELY WHEN EVERYTHING SHAKES OUT IN THE WASH AND ALL THESE BEAUTIFUL BENEFITS

THAT WE ENVISION ARE REALIZED, WE NEED TO ASK WILL THOSE COMMUNITIES WHO PUT THEIR PRIVACY

AT RISK ACTUALLY BENEFIT FROM THE FRUITS OF THAT RESEARCH AND I DON'T THINK THE ANSWER

IS SUCH A CLEAR YES RIGHT NOW. THE PROBLEM THE WAY I SEE IT IS THAT THESE

BIG STUDIES ARE CONTROLLED BY PEOPLE IN POWER, THERE'S THAT POWER WORD.

SORRY, THERE'S NOT A LOT WE CAN DO ABOUT THAT, IT'S THE WAY THE WORLD WORKS OBVIOUSLY RIGHT,

SO THE PEOPLE IN POWER HOLD MOST, IF NOT ALL, OF THE CARDS IN TERMS OF HOW THEY ACCESS AND

USE DATA, AND WHOM IT BENEFITS AND HOW IT BENEFITS THOSE PEOPLE.

WHEN I SAY PEOPLE IN POWER, I DON'T JUST MEAN FOR PROFIT BUT I MEAN IVY LEAGUE, IVY TOWERS,

GOVERNMENT, CORPORATIONS, HEALTH INSURANCE COMPANIES, HOSPITAL SYSTEMS, THEY'RE THE PEOPLE

THAT MAKE DECISIONS ABOUT RESEARCH AGENDAS, RESEARCH ALLOCATION, AND TRANSLATION TO THE

CLINICS, SO HOW THESE BENEFITS ACTUALLY END UP GETTING REALIZED.

THE QUESTION IS, FOR ALL THE TALK ABOUT HEALTH DISPARITIES THAT THESE PEOPLE DO, DO THEY

HAVE AN INCENTIVE -- I'M NOT TALKING ABOUT WHAT'S IN THEIR HEARTS OR WHETHER THEY�RE

ALTRUISTIC OR ACTUALLY CARE ABOUT HEALTH DISPARITIES AND I'M SURE MANY OF THEM ARE AND DO CARE

ABOUT IT � BUT IS THERE ANY INCENTIVE IN PLACE TO ACTUALLY CLOSE THOSE GAPS AND ELIMINATE

THOSE HEALTH DISPARITIES. I THINK EVEN PEOPLE WHO WANT TO WORK ON THIS AND WHO CARE ABOUT

THESE ISSUES BRING THEIR OWN BIAS INTO IT AND I THINK THAT HAPPENS SOMETIMES UNCONSCIOUSLY.

IF YOU LOOK HERE AT THIS SCREENSHOT OF A PIECE OF A SURVEY THAT CAME OUT OF NCI AND THAT�S

GOING ON ALL OVER THE COUNTRY. I THINK THESE QUESTIONS ARE A LITTLE BIT LEADING,

I DON�T KNOW WHAT YOU THINK. THIS QUESTION SAYS I THINK THE DEVELOPMENT

OF DNA RESEARCH IS HOPEFUL. I THINK IT'S POSITIVE MEDICAL PROGRESS. IT'S EASY ENOUGH TO AGREE

WITH THESE STATEMENTS WHEN IS YOU ARE LIVING IN YOUR COMMUNITY AND A RESEARCHER FROM A

UNIVERSITY COMES IN WITH A WHITE COAT, EITHER LITERALLY OR METAPHORICALLY, THE POWERFUL

DIFFERENTIAL BETWEEN YOU AND THAT PERSON IS BIG AND THEY COME INTO YOUR COMMUNITY AND

THEY TELL YOU ABOUT HOW THERE�S ALL THIS PROMISE IN THIS RESEARCH, DON'T YOU WANT TO

PARTICIPATE? DON'T YOU? BUT IF THERE'S NO EXPLANATION HERE OR ELSEWHERE

ABOUT THE FACT THAT HEY, BY THE WAY IF YOU DON'T ACTUALLY HAVE HEALTH INSURANCE OR IF

YOU DO, BUT YOU'RE SCARED OF THE DOCTOR OR YOU DON'T REALLY TRUST THEM OR IF YOU DO GO

TO THE DOCTOR, BUT YOU HAVE CHILDCARE TROUBLES OR YOU'RE HOMELESS OR YOU LIVE IN A PART OF

A CITY WITH A LACK OF ACCESS TO TRANSPORTATION TO GET TO THE DOCTOR OR IF YOU HAVE A WHOLE

BUNCH OF SOCIALLY AND CULTURALLY DETERMINED BEHAVIORS THAT LEAD TO POOR HEALTH, YOU PROBABLY

AREN�T ACTUALLY GOING TO SEE MUCH OF THE BENEFIT THAT WE'RE TALKING ABOUT AND THAT

PART ISN'T SO WELL EXPLAINED WHEN THE RESEARCHER GOES INTO THE COMMUNITY AND GIVES THE SURVEY.

IF YOU LOOK AT INCENTIVE STRUCTURE, THE PEOPLE AND POWER ARE THE ONES DIRECTING THIS RESEARCH

AND WHAT THEY GET OUT OF THE RESEARCH IS LIKELY GOING TO ALIGN WITH WHATEVER THEIR GOALS ARE

GENERALLY SPEAKING, WHAT IS A COMPANY�S GOALS, WHAT IS A HEALTH INSURER'S GOALS, ET

CETERA. SO WHAT ARE THE GOALS, FOR BIG COMPANIES,

HEALTH INSURERS, HOSPITAL SYSTEMS, THE ONES WHO ARE GOING TO USE THE FRUITS OF THIS RESEARCH,

THE GOALS ARE OBVIOUSLY TO MAKE HEALTHCARE CHEAPER AND MORE EFFICIENT.

THAT IS LITERALLY THE STATED GOAL. THAT'S THEIR BOTTOM LINE, THAT'S WHAT THEIR

STOCKHOLDERS ARE LOOKING FOR THEM TO DO RIGHT? NOT THAT THAT'S A BAD THING, GETTING BETTER

AT QUICKLY AND EFFICIENTLY DIAGNOSING SOMEONE�S PROBLEM AND KNOWING EXACTLY WHAT THE RIGHT

WAY TO FIX IT AND THE RIGHT RECIPE OF DRUGS OR COCKTAIL OF THINGS THAT YOU NEED TO FIX

IT AND GETTING THEM HEALTHY AND OUT OF THE HEALTHCARE SYSTEM QUICKER IS A GOOD THING.

IT'S NOT TO SAY THAT WE SHOULDN�T DO THE RESEARCH AND WE DON�T NEED THE DATA.

WE OBVIOUSLY DO. AS YOU ALL KNOW, MINORITIES HAVE BEEN HISTORICALLY

EXTRAORDINARILY UNDERREPRESENTED, AND NOT JUST IN THIS KIND OF RESEARCH BUT IN ALL KINDS

OF RESEARCH, AND SOMETIMES WHEN YOU LOOK AT THIS SLIDE IT LOOKS LIKE IT'S GETTING BETTER

BUT IF YOU LOOK A LITTLE BIT CLOSER, THESE ARE THE NUMBERS FOR GWAS STUDIES. WE HAVE

NOW IN GWAS STUDIES INCLUDED MORE PEOPLE THAT ARE NOT WHITE EUROPEANS BUT IF YOU TAKE A

LITTLE BIT OF A CLOSER LOOK WE�VE ONLY INCREASED AFRICAN PARTICIPATION BY 1.5% AND SOME PEOPLE

ARE ARGUING THAT THE NUMBERS ON INDIGENOUS PEOPLE HAVE ACTUALLY GONE DOWN.

THE QUESTION IS, IS INCREASED DIVERSITY IN GENETIC AND BIG DATA STUDIES ACTUALLY GOING

TO REDUCE THE HEALTH DISPARITIES? IS JUST RECRUITING MORE MINORITIES ACTUALLY

GOING TO FIX THE PROBLEM? I THINK THE ANSWER IS PROBABLY NO, NOT TO BE A DOWNER.

BUT I THINK THE SCIENCE BEARS THAT OUT RIGHT? SO THERE WAS A STUDY PUBLISHED JUST THE OTHER

DAY, IT WAS ALL OVER FACEBOOK AND NPR, AND IT CAME OUT OF ROBERT WOOD JOHNSON AND HARVARD

PUBLIC HEALTH AND IT WAS A SURVEY OF BLACK AMERICANS ACROSS THE U.S. AND IT ASKED A WHOLE

BUNCH OF QUESTIONS, BUT ONE OF THE QUESTIONS IT ASKED WAS: HAVE YOU EVER AVOIDED MEDICAL

CARE BECAUSE OF A CONCERN ABOUT DISCRIMINATION OR EXPERIENCE WITH DISCRIMINATION. AND FULLY

22%, SO ALMOST A QUARTER OF BLACK AMERICANS SAID THAT THEY HAD.

OTHER DATA I'M SURE YOU�RE FAMILIAR WITH, SHOWS THAT BLACK AMERICANS EXPERIENCE WORST

OUTCOMES AND HIGHER MORBIDITY AND MORTALITY ACROSS CAUSES REGARDLESS OF SOCIOECONOMIC

STATUS AND INSURANCE STATUS. MUCH WORK HAS BEEN DONE TO ISOLATE THE VARIABLES

INVOLVED IN THIS DISPARITY AND THERE�S EVEN WORK THAT HAS SHOWN THAT THE EXPERIENCE OF

DISCRIMINATION ALONE IS AN INDEPENDENT PREDICTOR OF MORTALITY CONTROLLING FOR ALL OTHER VARIABLES.

SORTING OUT EVERY OTHER VARIABLE, JUST FEELING THE EXPERIENCE OF DISCRIMINATION CAUSES REDUCTION

IN HEALTHCARE. SO THE POINT HERE THAT THERE'S SO MUCH GOING

ON BEYOND AND OUTSIDE THE CLINIC THAT INFLUENCES THIS DISPARITY, RIGHT? SO SIMPLY IMPROVING

CLINICAL CARE OR MAKING IT MORE PRECISE, IT MIGHT DO SOMETHING FOR SOME OF THESE DISPARITIES

BUT IT WON'T COME CLOSE TO CLOSING THE GAP. SO THIS FLOWCHART SHOWS HOW ALL THESE FACTORS

ARE INTERRELATED, THE SOCIAL DETERMINANTS INCLUDING RACISM ITSELF, INTERACTS WITH HEALTH

BEHAVIORS, PHYSICAL ENVIRONMENT, AND CLINICAL CARE, AND I THINK THE POINT TO TAKE AWAY FROM

THAT, IS THAT JUST FOCUSING ON HOW WE CAN USE THESE BIG DATA AND GENETIC STUDIES TO

IMPROVE CLINICAL CARE MISSES ALL THESE OTHER PIECES WHICH I THINK ACTUALLY PLAY A MUCH

BIGGER ROLE IN THESE HEALTH DISPARITIES SO I'M NOT GOING TO BE ABLE IT GET TO THE END

BUT I JUST WANT TO SHOW YOU THESE LAST TWO SLIDES BECAUSE I REALLY LIKE THEM.

WHEN WE TEACH SOCIAL DETERMINANTS OF HEALTH TO MEDICAL STUDENTS AT TEMPLE, WE ALWAYS SHOW

THESE TWO. IT'S HARD TO GET FUTURE DOCTORS TO RECOGNIZE

HOW LIMITED THEIR ROLE IS, SO GOING BACK TO WHAT I'M SAYING ABOUT THE CLINIC NOT PLAYING

AS BIG A ROLE AS WE THINK IN TERMS OF OVERALL HEALTH. WE RECOGNIZE THESE TRADITIONAL TIPS

LIKE THESE ARE TRADITIONAL TIPS FOR BETTER HEALTH: SAFE SEX, SUNSCREEN, HELMETS, EXERCISE,

BALANCED DIETS, DON'T SMOKE. I REALLY LIKE THE WORDING OF THE LAST ONE:

DON'T SMOKE. IF YOU SMOKE, STOP. IF YOU CAN'T STOP NOW, TRY NOT TO SMOKE FOR VERY MUCH LONGER.

THIS IS REALLY OBVIOUS, RIGHT? BUT PROBLEM IS THESE TRADITIONAL HEALTH TIPS DON'T EXIST

IN A CULTURAL VACUUM. EVERY ONE OF THESE AND WHETHER SOMEONE IS MORE LIKELY TO DO THESE

HEALTHY BEHAVIORS OR DO THE OPPOSITE IS A PRODUCT OF THEIR CULTURE AND WHERE THEY LIVE

AND ALL THESE OTHER SOCIAL DETERMINANTS. SO THEN WE ASK THE MEDICAL STUDENTS, WHAT

UNDERLIES THESE? WHAT CAUSES THESE BEHAVIORS? WHAT MAKES SOMEONE MORE LIKELY TO DO THESE

THINGS OR NOT DO THEM? AND THEN WE SHOW THEM THESE ALTERNATIVE HEALTH TIPS.

SO THESE ARE REALLY THE DETERMINANTS OF WHETHER SOMEONE'S HEALTHY.

PRACTICE NOT BEING UNEMPLOYED. ACQUIRE PLENTY OF ASSETS LIKE A CAR AND HOUSE. BE MORE EDUCATED.

GROW UP WEALTHY IN A LOW CRIME NEIGHBORHOOD WITH ACCESS TO HEALTHY FOOD.

DON'T LIVE IN A POOR NEIGHBORHOOD AND IF YOU DO, DON�T READ ADVERTISEMENTS. AND FINALLY

MY FAVORITE: DON'T BE POOR. IF YOU ARE POOR, STOP BEING POOR. IF YOU CAN'T STOP NOW, TRY

NOT TO BE POOR MUCH LONGER. [LAUGHTER]

ALL OF THESE ARE OBVIOUSLY MUCH MORE CLOSELY TIED TO HEALTH MORE THAN ANYTHING A DOCTOR

CAN DO IN A CLINICAL SETTING. SO MY ARGUMENT REALLY IS, FOR ALL THE PROMISE

OF PMI AND BIG DATA AND ALL THESE STUDIES, CAN IT OR WILL IT ACTUALLY DO ANYTHING TO

TACKLE THESE ROOT CAUSES OR ARE ITS BENEFITS ISOLATED TO THE CLINICAL SETTING WHERE THEY

WILL HAVE LESS OF AN IMPACT ON PATIENTS WHO ARE ALREADY IMPACTED BY SOCIAL DETERMINANTS

OF HEALTH, ALREADY HAVE LESS POWER AND PRIVILEGE AND WEALTH.

OR WILL THEY EVEN BE USED ON VAST MAJORITY OF THESE UNDERREPRESENTED COMMUNITIES WHO

VISIT DOCTORS SO MUCH LESS FREQUENTLY IN THE FIRST PLACE.

WHAT CAN GENETICS DO ABOUT THAT OR TELL US ABOUT THAT?

I DON'T THINK THAT MUCH. SO, I HAVE PROPOSED A NEW RESEARCH ETHICS

FRAMEWORK WHICH I DON'T HAVE TIME TO GET TO BUT MAYBE WE CAN GET TO IT IN THE QUESTIONS.

THANKS. [APPLAUSE]

>>THANK YOU ALL. IT WAS GREAT TO HEAR FROM FORMER BOSSES AND FORMER COLLEAGUES.

SO WE WILL KICK IT OFF, SO DR. SHUMAN YOU TALKED A LOT ABOUT WHAT YOUR PATIENT MARK

IS AND IS NOT CONCERNED ABOUT WHEN HE GOES INTO SURGERY. WHAT IF AFTER MARK GOT ALL BETTER,

HE ATTENDED THIS CONFERENCE, DO YOU THINK THE AVERAGE PATIENT ACTUALLY THINKS ABOUT

YOUR NORMATIVE PROPOSALS? >> I THINK IT'S A GREAT QUESTION, AND I THINK

IT'S INDIVIDUALIZED WHICH IS WHY THE INFORMED CONSENT AND INFORMED DISCLOSURE PROCESS HAS

TO BE SIMILARLY INDIVIDUALIZED. I THINK THE DATA REALLY THAT HAS BEEN SHARED OVER THE

COURSE OF THIS ENTIRE DAY SHOWS US THAT WE ARE VERY BAD AT PREDICTING WHAT PATIENTS CARE

ABOUT AND WHICH PATIENTS ARE GOING TO CARE ABOUT WHICH COMPONENTS AND I DON'T HAVE AN

ALL ENCOMPASSING SOLUTION OTHER THAN TO SAY THAT WE IGNORE THESE THINGS ON THE UPSTREAM

END AT OUR OWN PERIL AND THAT ONE OF THE MOST IMPORTANT PARTS OF THIS IS TO CREATE AN ATMOSPHERE

AND A DISCLOSURE ENVIRONMENT IN WHICH MARK AND EVERYONE LIKE HIM HAS THE OPPORTUNITY

TO LEARN MORE ABOUT THESE COMPONENTS UP FRONT LEST THEY BE SURPRISED OR DISILLUSIONED AFTER

THE FACT. >> THAT ANSWERED OUR QUESTION THAT JUST CAME

IN: HOW WOULD YOU CHANGE THE CONSENT NOTICE PROCESS THAT YOU JUST DESCRIBED?

>> RIGHT. SO I GUESS MY ARGUMENT IS THAT THE CONSENT

TO NOTICE PROCESS IS NOT THE SCREENSHOTS OF THE CONSENT FORMS THAT I SHOWED, BUT RATHER

THAT IS MY RELATIONSHIP WITH THIS INDIVIDUAL. AND THAT CONSENT PROCESS STARTS THE DAY I

MEET HIM AND CONTINUES THROUGHOUT THE PERIOD DURING WHICH WE ARE CONSIDERING SURGERY.

THE FORMS, IN MY MIND, ARE A WAY TO, OF COURSE, SATISFY THE REGULATORY REQUIREMENTS, BUT ALSO

ARE SIMPLY A MANIFESTATION OF THE FACT THAT WE HAVE MADE THIS AGREEMENT TOGETHER AND WE

HAVE A WRITTEN DOCUMENTATION OF THE CONVERSATION AND THE AGREEMENT THAT WE HAD.

SO I DON'T NECESSARILY THINK THIS IS A CONTRACT PER SE, BUT MUCH MORE OF THE COVENANT OF THE

DOCTOR-PATIENT RELATIONSHIP. >> THANK YOU. NICOLE WE HAVE SOME--COUPLE

COMMENTS AND QUESTIONS. SOME SAY THAT YOURS IS THE MOST IMPORTANT

PAPER OF TODAY. SO TELL US ABOUT YOUR PROPOSAL THAT YOU DIDN'T GET TO.

>> YEAH, SO THE BASIC THING IS, I THINK THAT WHEN WE THINK ABOUT RESEARCH ETHICS, WE THINK

ABOUT THESE VERY DISCRETE DELIBERATE THINGS AND I AM GOING TO READ A QUOTE THAT I DIDN'T

GET TO BUT I THINK IT'S REALLY GOOD, SO THIS IS ROSAMOND RHODES ABOUT RETHINKING RESEARCH

ETHICS: IN THE CONTEXT OF GROSS VIOLATIONS OF THE

GOLDEN RULE, SERIOUS INEQUITY, EGREGIOUS INJUSTICE, AND WORTHLESS STUDY DESIGNS, POINTING AT THE

FAILURE TO OBTAIN INFORMED CONSENT AS THE ETHICAL DOWNFALL OF NAZI RESEARCH SEEMS TO

MISS THE TARGET ENTIRELY. SO THAT'S THE POINT I'M MAKING HERE IS THAT

WE'RE LOOKING AT THESE THINGS, WE THINK WE HAVE INFORMED CONSENT, WE�VE GOT PRIVACY

AND WE REVIEW EACH INDIVIDUAL PROTOCOL IN FRONT OF AN IRB AND WE DON'T SEE THEM ALTOGETHER

AS A WHOLE. WE DON'T THINK ABOUT THE ENTIRE RESEARCH AGENDA,

SO WE'RE MISSING A MUCH BROADER POINT: WHICH IS THE PURPOSE OF THIS RESEARCH, WHY ARE WE

HERE, WHY ARE WE DOING THIS AND WHO ARE WE TRYING TO BENEFIT?

SO TO QUICKLY GIVE YOU THE THREE NEW PRINCIPLES THAT I WANT TO SORT OF ADD OR SLIGHTLY TWEAK

IN TERMS OF RESEARCH ETHICS THE WAY WE THINK ABOUT IT CURRENTLY BASED ON BELMONT AND OTHER

THINGS, IS INSTEAD OF AUTONOMY I WANT TO USE AGENCY INSTEAD BECAUSE IT'S STRONGER, AND

INSTEAD OF THINKING ABOUT PEOPLE AS SORT OF AUTONOMOUS, EVERYONE'S RATIONAL, EVERYONE'S

THE SAME, CULTURELESS VACUUM, WE SHOULD ACKNOWLEDGE THAT THEY HAVE DIFFERENT LIVES AND DIFFERENT

EXPERIENCES AND WE SHOULD DO WAY MORE TO ENCOURAGE THEM AND EMPOWER THEM TO ACTUALLY BE INVOLVED,

SO NOT JUST AS PARTICIPANTS IN THAT INTERACTION, BUT AS A VOICE AT THE TABLE IN TERMS OF HOW

WE DESIGN THIS RESEARCH AND WHO BENEFITS FROM IT AND HOW.

AND THEN I WANT TO ADD THE PRINCIPLE OF SOLIDARITY, SO MEANING WE UNDERSTAND THAT WE ARE CONNECTED

TO EACH OTHER AS PEOPLE. THIS ONE IS GOING TO BE HARD TO OPERATIONALIZE I THINK IN THIS

CONTEXT BECAUSE I�M TALKING ABOUT THE POWER STRUCTURES AND THE INCENTIVES, BUT IF THE

PEOPLE IN POWER HAD SOLIDARITY WITH PEOPLE WHO NOT IN POWER, IF WE DEMANDED THAT THEY

DID BY INCREASING MINORITY AND UNDERSERVED FOLKS REPRESENTATION IN THOSE ROOMS AND HAVE

THOSE SEATS AT THE TABLE, YOU MIGHT BE ABLE TO SHIFT SOME OF THAT A LITTLE BIT. THAT ONE

IS A BIT HARDER. AND INSTEAD OF JUSTICE, WHICH I THINK IS REALLY

IMPORTANT, I WANT TO STRENGTHEN IT TO TALK ABOUT SOCIAL JUSTICE. SO, YOU KNOW WE HAVE

THIS FRAMEWORK, WE HAVE THIS SORT OF IDEA IN AMERICA OF RUGGED INDIVIDUALISM, BOOT STRAPS

AMERICAN CULTURE AND WE KNOW THAT IGNORES STRUCTURAL SUPPRESSION AND RACISM, SO WE'RE

NOT JUST TALKING ABOUT JUSTICE, WE'RE TALKING ABOUT SOCIAL JUSTICE, WE ARE ALL TOGETHER

HERE AS PEOPLE AND WE ALL LIVE IN THIS CULTURE, SO, NOT EQUALITY, BUT EQUITY, WHICH MIGHT

REQUIRE US TO DEVOTE FAR MORE RESOURCES TO SERVING UNDERSERVED POPULATIONS THAN WE CURRENTLY

DO BECAUSE WE'RE MAKING UP FOR DECADES OF NOT HAVING DONE SO.

>> THANK YOU. I�M GLAD YOU GOT TO FIT THAT IN.

>> I'LL WRITE A PAPER ON IT. >> KAYTE, YOU TALKED ABOUT ENSURING A CONSISTENT

FLOOR OF PROTECTION REGARDLESS OF HOW DATA ENTERS THE SYSTEM, I WOULD LIKE TO HEAR ABOUT

THESE PROTECTIONS SHOULD BE AND FROM DR. SHUMAN ABOUT HOW THAT PLAYS OUT IN PRACTICE.

>> YEAH. IT'S A REALLY GOOD QUESTION.

SO ONE OF THE CHALLENGES OF INFORMED CONSENT, AS DR. SHUMAN WENT THROUGH FOR US AND ALSO

HAPPENS IN THE DTC CONTEXT, IN THE DIRECT CONSUMER CONTEXT, AS YOU HOPEFULLY SAW FROM

THE SNIPPET OF AN EXAMPLE OF THE TERMS AND CONDITIONS IS THAT WE CAN DISCLOSE BUT THAT

DOESN'T MEAN PEOPLE UNDERSTAND. AND SO I THINK THAT THAT'S PART OF WHAT OUR

FIRST PANEL WAS TALKING ABOUT AND WHAT A LOT OF PEOPLE HAVE BEEN GOING THROUGH THIS PROCESS

IS WHAT�S IMPORTANT IS THAT PEOPLE UNDERSTAND, WHAT'S IMPORTANT IS THAT WE'RE HELPING PEOPLE

AND THAT'S REALLY THE SORT OF PRINCIPLE THAT WE NEED TO ENSURE IS GOING THROUGH ALL THREE

OF THESE SILOS, BUT INSTEAD WHAT WE FOCUSED ON IS WHAT CAN WE CONTROL AND I KNOW I WOULD

DO THAT AS A FORMER GOVERNMENT POLICY PERSON BECAUSE THAT'S THE LIMIT OF OUR POWER, BUT

I REALLY DO THINK WE NEED TO GO BACK TO THE DRAWING BOARD ON SOME OF THIS, AND SAY WHAT

DO PEOPLE ACTUALLY CARE ABOUT BECAUSE AT THIS POINT, WE ACTUALLY KNOW WHAT THEY CARE ABOUT.

WE CAN'T PRETEND THAT WE DON'T KNOW WHAT THEY CARE ABOUT AND HOW DO WE ACTUALLY ENABLE THAT.

THAT'S AN EMPIRICAL QUESTION THAT CAN BE ANSWERED AND WHEN IT'S ANSWERED THAT WHAT WE SHOULD

REGULATE. THAT�S A CHALLENGE, I GET THAT, BUT THAT'S

THE ANSWER TO THE QUESTION. >> NOW, I THINK THE ONLY NUANCE THAT I WOULD

PROVIDE IS THAT WE THINK OF CLINICAL INFORMED CONSENT DIFFERENTLY THAN RESEARCH INFORMED

CONSENT, AND THE MOVEMENT OF PRECISION MEDICINE, AS WELL AS JUST THE TRAJECTORY OF GENETIC

INFORMATION, IS REALLY BLURRING THE LINE BETWEEN CLINICAL CARE AND RESEARCH, AND I WOULD ARGUE

THAT OUR CHALLENGE IS TO RECOGNIZE THAT THE INFORMED CONSENT PROCESS NEEDS TO NOT BE SILOED

INTO CLINICAL CONSENT AND RESEARCH CONSENT, BUT RECOGNIZE THE FACT THAT THIS IS REALLY

A CONTINUUM BOTH FROM AN INTERACTION WITH PATIENT AND/OR SUBJECT, BUT ALSO FROM A REGULATORY

STANDPOINT. >> THANK YOU.

OKAY, SO, IS ANOTHER COMMENT FROM THE AUDIENCE, THE FEDERAL GOVERNMENT DOESN'T CURRENTLY CONSIDER

A WHOLE GENOME IDENTIFIABLE. SHOULD WE?

WHY OR WHY NOT? >> SO IF YOU HAVE SOMEONE'S WHOLE GENOME SEQUENCE,

IT IS NOT IMMEDIATELY IDENTIFIABLE, BUT IT IS UNIQUELY IDENTIFIABLE AND THIS COMES FROM

WORK THAT MANY OF US DID TOGETHER ON THE COMMISSION, SORT OF THE IDEA THAT IF YOU HAVE ENOUGH OF

A SEQUENCE, YOU CAN REIDENTIFY ONLY ONE PERSON. BUT I THINK THAT THIS REALLY GOES BACK TO

DR. SWEENEY'S KEYNOTE THAT WE ALL LISTENED TO, IS WHAT'S OUR THRESHOLD FOR ALLOWING FOR

RISK IN ORDER TO INCENTIVIZE GOOD RESEARCH? AND THAT MIGHT BE DIFFERENT FROM PERSON TO

PERSON, WHICH IS REALLY THE CHALLENGE WHEN YOU'RE TRYING TO MAKE A POLICY THAT APPLIES

TO EVERYONE. SO SHOULD THAT BE APPROACHED? SHOULD WE POLL

ALL AMERICANS AND SEE WHAT KIND OF RISK THEY'RE WILLING TO ACCEPT AND IF THAT RISK IS THE

THRESHOLD THAT WE'RE AT THEN WE'LL DO IT, I DON'T KNOW THE ANSWER TO THAT QUESTION.

BUT I KNOW IT'S REALLY HARD TO RE-IDENTIFY THEM AND I CAN'T DO IT. THE AVERAGE PERSON

CAN'T DO IT. THERE'S NOT A LOT OF MISUSE AND SO A LOT OF

PEOPLE HAVE ACTUALLY MADE MORE MISUSE ARGUMENTS AND THAT WE SHOULD BE REGULATING THAT AS OPPOSE

TO IDENTIFIABILITY, SO THAT�S ANOTHER POSSIBILITY. >> GOT IT.

SO TO NICOLE, ISN'T GENETIC BIOSEQUENCING IDENTIFIABLE AS A BIOMETRIC IDENTIFIER OR

AS ANY ANOTHER UNIQUE IDENTIFYING CHARACTERISTIC AS PART OF THE 18 IDENTIFIERS UNDER THE DEIDENTIFICATION

THE SAFE HARBOR RULE? DOES THAT--NO?

OKAY. [INAUDIBLE]

>> OKAY AND THEN KAYTE, AS ONE WHO WORKS WITH DISADVANTAGED POPULATIONS WHO ARE OFTEN NOT

IN A SITUATION TO PROVIDE CONSENT OR MAKE DECISIONS, I CONSIDER THE ETHICAL DECISIONS

RELATED TO DATA SHARING. THERE IS THE ISSUE OF STIGMA AND DISCRIMINATION.

YOUR THOUGHTS? >> YES, STIGMA AND DISCRIMINATION ACT, PART

OF WHAT I'M SORT OF TRYING TO SAY IS, NOT ONLY IS THIS RESEARCH--I DON'T THINK REALLY

HELPING THE PEOPLE THAT IT'S SUPPOSED TO BE HELPING OR SHOULD BE HELPING OR SHOULD BE

CARING ABOUT HELPING, BUT IT ALSO DOES HAVE A RISK, IT SELF-CARRIES A RISK OF FURTHER

STIGMATIZING AND CAUSING FURTHER DISCRIMINATION FOR THESE GROUPS.

SO I THINK THE TRAJECTORY WE'RE GOING DOWN NOW IS JUST TO CONTINUE TO EXACERBATE AND

PERPETUATE THOSE SAME DISPARITIES AND I THINK ONE OF THE THINGS WE NEED TO DO IS NOT JUST

PAY LIP SERVICE TO THIS ISSUE AND NOT JUST SAY: HEY, COMMUNITY ENGAGEMENT, WE'LL JUST

TALK TO PEOPLE AND THAT WILL HELP US NOT STIGMATIZE THEM.

YOU KNOW WE CAN'T JUST HAVE ONE COMMUNITY MEMBER ON AN IRB. IF WE CARE ABOUT ACTUALLY

ENGAGING WITH THEM AND TALKING TO THEM ABOUT WHAT THEIR CONCERNS ARE, WE CAN'T JUST WAVE

OUR HANDS AND SAY THEY DON�T REALLY HAVE HEALTH LITERACY AND THEY WON�T REALLY UNDERSTAND

THIS. WE HAVE TO DO THE WORK OF EDUCATING AND HELPING THEM UNDERSTAND WHAT THEIR STAKE

IN IT IS AND INVITING THEM INTO THE CONVERSATION AND UNDERSTAND THAT THEY'RE NOT AT A TECHNICAL

LEVEL AND MIGHT NOT AT FIRST UNDERSTAND THEIR STAKE IN IT, BUT IF WE ACTUALLY CARE ABOUT

WHAT THEY THINK AND WE WANT TO INVITE THEM IN, THEN IT'S ON US TO DO THAT WORK.

>> THANK YOU, AND BACK TO KAYTE. WHAT FUTURE RESEARCH, IF ANY, DO YOU THINK IS NECESSARY

TO ACHIEVE SOME OF THE GOALS OUTLINED IN YOUR PRESENTATION.

>> I THINK IT WOULD BE REALLY INTERESTING NOW THAT WE KNOW WHAT THE REGULATIONS MIGHT

BE POSSIBLY, MEANING THE COMMERCIALIZATION DISCLOSURE ONES. ACTUALLY LIKE REALLY GO BACK

AND ASK PEOPLE WHAT KINDS OF LEVELS OF DISCLOSURE ARE YOU INTERESTED IN.

AND ALSO, WHAT KINDS OF ADDITIONAL INFORMATION ARE YOU INTERESTED IN AND ALSO HOW MIGHT THAT

AFFECT YOUR ENROLLMENT IN THIS RESEARCH. I THINK THE CHALLENGE IS GOING TO BE IF WE DO

THAT RESEARCH AND FIND THAT WHAT PEOPLE WANT DISCLOSED ACTUALLY MAKES THEM LESS LIKELY

TO ENROLL IN OUR RESEARCH. IF WE'RE NOT LEGALLY REQUIRED TO DISCLOSE

THAT LEVEL OF INFORMATION, WHAT DIRECTION WE'RE GOING TO TAKE.

AND THEN WE SHIFT TO OUR ETHICS COLLEAGUES AS OPPOSED TO OUR REGULATORY COLLEAGUES, BUT

I THINK THAT'S IMPORTANT WORK THAT NEEDS TO BE DONE.

>> EXCELLENT. ALL RIGHTY.

WELL, THAT WRAPS UP OUR Q&A. BIG ROUND OF APPLAUSE.

[ APPLAUSE ] >> AND NOW WE WILL MOVE ON TO OUR LAST PANEL.

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