Re: Human Genome Research Project

[Guest guest]

Hello,

IF I had children of my own I wouldn't want this genetic testing

done. Why would I want to burden my mind and my child's that 60-80 years down

the road, they are going to lose their ability to do anything (Alzheimer's).

As far as NF2 I think the fact that I have it and with your (crew) help I'd

wager I would be able to tell if they had it from a very young age. I showed

signs of it from the time I was 2 years old. It didn't run in my family

though so no DR's diagnosed it then. If one of my parents had it they

probably would have known a lot sooner. Also, I would not want ins co to

catch wind of anything like that either. I've seen what they can do, and I

WOULD NOT stand for them to do that to my kids. BUT ) I don't have kids so

this is just an opinion what ever you guys do or want to do with your own

kids is fine with me, they're YOUR kids )

Hugs,

in AZ

[Guest guest]

Dear Donna,

About genetics doctors. Our youngest son, number three was in the

hospital when he was seven months old. I stayed with him while he was there.

One of the doctors that saw hime was a genetics doctor. When the doctor was

asking about family medical history I told him about my NF2 among other

family medical problems.

As soon as he heard this he began lecturing me aboout having

children period. Telling me how people like me shouldn't have children and

that there were many healthy children born who needed to be adopted. He

raved on and on saying stupid things like this.

At first I was shocked and sat there with my mouth hanging open to the

floor. He was still raving so I interrupted him and said, " Excuse me. Excuse

me. This is our third child and we have decided he will be our last. My

husband and I DID speak with my family doctor asking him about the

possibility of any children we had inheriting the NF. We were assured that

there was a 1 in 3 chance of inheritance and this waas a VERY outside

chance. He told us we should go ahead and have children if we wanted to. So

I said we decided to listen to this doctor.

We also considered the fact that if we had children and they did

inherit the NF that we would know more of what we were dealing with that my

mother did with me. And what about the chances of the child(ren) inheriting

some other disease or being disabbled in some othe way ? What about the

chances of our child(ren) being healthy then falling off a swing or falling

off a bicycle and injuring themself ? Or what about someone injuring them in

some way ? There are many variables in life. We considered the risks. "

By the time I finished saying all of this he got quiet and left. He

never caame back to my son's room and that was fine with me. I already had

enough to deal with. When my husband came later to visit our son and I, I

told him about this experience. He was furious ! He wanted to tear this

doctor's head off ! He said things like, " Where does this doctor get off

telling us we shouldn't have children ?! " He wanted to know the doctor's

name so he could confront him. I told him I didn't know the doctor's name

because I was so upset and taken off guard by his tirade that I didn't think

to read his name on his hospital I.D. badge.

This was our first and worst experience with a genetics doctor. We have

dealt with others but maybe they were to a class about relating to people.

None have treated us the way this doctor did. This experience was 15 years

ago but I remember it like it happened last week. This was the first time I

really realized that doctors are not gods but people too and as such

sometimes THEY not us need to be educated.

Kramer

Human Genome Research Project

>From: HmSchoolMa@...

>

>OK Crewbies, here we go. I went to a meeting for the Human Genome Research

>Project. You will be interested in knowing that their goal is to have all

>genes mapped by 2005. That's not much time considering how many genes

there

>are to map.

>Here's a question that was asked at the meeting, and I think most of you

will

>answer the same way I did, but probably not all of you. I'm very curious

to

>hear the answers though.

>

>Should parents have the right to have their children tested for genetic

>disorders?

>(The general answer was yes for anything treatable that would occur during

>their childhood years.) What if the disorders are adult-onset? What if

>they're late-adult onset such as Altzheimer's?

>

> Curious to see your answers. By the way, I wish you could see the

issues

>they discuss. Anyone who is ever asked to be a consumer rep. for genetics

>issues, please accept! Health-care professionals are very naive about some

>issues. They actually said in this meeting that in today's world,

healthcare

>professionals generally try to give information about genetic disorders but

>not influence the family's decision about whether or not to have children.

>What a bunch of baloney! Raise your hand if you had at least one doctor

tell

>you that you absolutely, positively should not have children because of the

>risks of NF!

> OK, I will hush now and listen to your responses.

>

> God Bless!

>

> ... Donna

>

[Guest guest]

, Do you know Ginny Fickel? She mentioned you had NF2 and I immediately

asked her if she had told you about the Crew; she said she would send me your

address and I could tell you; when I saw your name pop up now, and the 3 kids,

which Ginny mentioned, I realized you obviously already know! Marie Drew

H.Lee Kramer wrote:

>

>

> Dear Donna,

> About genetics doctors. Our youngest son, number three was in the

> hospital when he was seven months old. I stayed with him while he was there.

> One of the doctors that saw hime was a genetics doctor. When the doctor was

> asking about family medical history I told him about my NF2 among other

> family medical problems.

> As soon as he heard this he began lecturing me aboout having

> children period. Telling me how people like me shouldn't have children and

> that there were many healthy children born who needed to be adopted. He

> raved on and on saying stupid things like this.

> At first I was shocked and sat there with my mouth hanging open to the

> floor. He was still raving so I interrupted him and said, " Excuse me. Excuse

> me. This is our third child and we have decided he will be our last. My

> husband and I DID speak with my family doctor asking him about the

> possibility of any children we had inheriting the NF. We were assured that

> there was a 1 in 3 chance of inheritance and this waas a VERY outside

> chance. He told us we should go ahead and have children if we wanted to. So

> I said we decided to listen to this doctor.

> We also considered the fact that if we had children and they did

> inherit the NF that we would know more of what we were dealing with that my

> mother did with me. And what about the chances of the child(ren) inheriting

> some other disease or being disabbled in some othe way ? What about the

> chances of our child(ren) being healthy then falling off a swing or falling

> off a bicycle and injuring themself ? Or what about someone injuring them in

> some way ? There are many variables in life. We considered the risks. "

> By the time I finished saying all of this he got quiet and left. He

> never caame back to my son's room and that was fine with me. I already had

> enough to deal with. When my husband came later to visit our son and I, I

> told him about this experience. He was furious ! He wanted to tear this

> doctor's head off ! He said things like, " Where does this doctor get off

> telling us we shouldn't have children ?! " He wanted to know the doctor's

> name so he could confront him. I told him I didn't know the doctor's name

> because I was so upset and taken off guard by his tirade that I didn't think

> to read his name on his hospital I.D. badge.

> This was our first and worst experience with a genetics doctor. We have

> dealt with others but maybe they were to a class about relating to people.

> None have treated us the way this doctor did. This experience was 15 years

> ago but I remember it like it happened last week. This was the first time I

> really realized that doctors are not gods but people too and as such

> sometimes THEY not us need to be educated.

>

> Kramer

> Human Genome Research Project

>

> >From: HmSchoolMa@...

> >

> >OK Crewbies, here we go. I went to a meeting for the Human Genome Research

> >Project. You will be interested in knowing that their goal is to have all

> >genes mapped by 2005. That's not much time considering how many genes

> there

> >are to map.

> >Here's a question that was asked at the meeting, and I think most of you

> will

> >answer the same way I did, but probably not all of you. I'm very curious

> to

> >hear the answers though.

> >

> >Should parents have the right to have their children tested for genetic

> >disorders?

> >(The general answer was yes for anything treatable that would occur during

> >their childhood years.) What if the disorders are adult-onset? What if

> >they're late-adult onset such as Altzheimer's?

> >

> > Curious to see your answers. By the way, I wish you could see the

> issues

> >they discuss. Anyone who is ever asked to be a consumer rep. for genetics

> >issues, please accept! Health-care professionals are very naive about some

> >issues. They actually said in this meeting that in today's world,

> healthcare

> >professionals generally try to give information about genetic disorders but

> >not influence the family's decision about whether or not to have children.

> >What a bunch of baloney! Raise your hand if you had at least one doctor

> tell

> >you that you absolutely, positively should not have children because of the

> >risks of NF!

> > OK, I will hush now and listen to your responses.

> >

> > God Bless!

> >

> > ... Donna

> >

[Guest guest]

At 09:08 AM 7/13/99 EDT, you wrote:

>From: HmSchoolMa@...

>

>

>Should parents have the right to have their children tested for genetic

>disorders?

Yes! If the children are the parents legal and moral responsiblity, the

parents should have that right. Once the child becomes 18, the child should

be able to decide for himself. But, parental coaching couldn't hurt at this

point!

My 2 cents,

Sherry