If We Could "Cure" Down Syndrome, Should We?

As someone who's been around DS kids all his life, I often wonder if the people without Downs are the ones we should try to cure.

If it becomes possible should we cure it? I say yes. I think to say, "oh, but they have such wonderful personalities! We need them to show the rest of us how to be better people!" is the height of self-serving selfishness. Being born with Down Syndrome, besides the social consequences, leads to a host of other health issues. Down Syndrome Effects

In some cases, certain Down syndrome effects, such as hypotonia, may be present at birth; others may not become evident until adulthood. The effects of this condition vary widely among individuals, and may be experienced in nearly every system in the body. Common Down syndrome effects can include thyroid problems, hearing problems, congenital heart disease, eye problems, and joint and muscle problems.

Click to expand...

Not to mention the added burden of women having to make the excruciating decision whether to have a child who will be an emotional and financial burden on them or terminating the pregnancy.
Extracted from the article linked in the OP:

The number of babies born with Down syndrome has been rising in the past decade, McCabe found. But research suggests that about 74 percent of women who receive a prenatal diagnosis of Down syndrome end their pregnancies.

Click to expand...

Ambrosia said:

If it becomes possible should we cure it? I say yes. I think to say, "oh, but they have such wonderful personalities! We need them to show the rest of us how to be better people!" is the height of self-serving selfishness.

Click to expand...

Agree completely. Some people with Down Syndrome are more high functioning than others, but the fact is, some parents of children with Down Syndrome have to worry about what will happen to their children after they pass away. I suppose I might feel differently if all people with developmental disabilities could learn to be self sufficient. But not all of them can. Knowing that your child will never be able to live as an adult and be self-sufficient, and that there might be no one you trust to take care of him or her after you die is something I wish no one had to go through.

Ambrosia said:

If it becomes possible should we cure it? I say yes. I think to say, "oh, but they have such wonderful personalities! We need them to show the rest of us how to be better people!" is the height of self-serving selfishness. Being born with Down Syndrome, besides the social consequences, leads to a host of other health issues. Down Syndrome Effects

Click to expand...

Thank you for saying this. I am struck over and over again by how often Down syndrome is lauded for what it "teaches" the surrounding people who don't have it--as if all that matters about it is that other people benefit from Learning Important Life Lessons That Only People With Down Syndrome Can Teach. To me, that disrespects the humanity of the very people who have to live with its consequences their entire lives. These are human beings who should exist for their own selves, not to "enhance" the rest of us or serve as our self-improvement tools.

This is like asking if we can cure all forms of AIDs, should we?

Hell yes...

thothguard51 said:

This is like asking if we can cure all forms of AIDs, should we?

Click to expand...

Not exactly.

caw

Agree Duchess (that we should cure if possible).

I hugely respect the intellect and admire the grit of Stephen Hawking, who opened the 2012 Paralympic Games. But I don't wish for motor neurone disease, so that I too might overcome the challenge it presents. There are "Wounded Warriers" who, from time to time, make me ashamed at my occasionally self-pitying ways. But I don't long for a wheelchair.

(in fairness though, I don't know that Rwam's post need be interpreted as saying that no cure for DS is needed).

thothguard51 said:

This is like asking if we can cure all forms of AIDs, should we?

Hell yes...

Click to expand...

wait is there more than one form of AIDS?

To the op, yeah I'm all for the cure. But I do feel for people who get increasingly less help as their health problem becomes less common.

thothguard51 said:

This is like asking if we can cure all forms of AIDs, should we?

Hell yes...

Click to expand...

These seem entirely different things to me - same as the Hawking thing, which holds to the AIDS/HIV comparison to me.

There's a difference between curing a disease someone gets that affects or changes how they were originally and 'curing' something that basically is part of how they were originally.

The 'curing' Down's thing is more in line (but not the same as DS has cognitive and physical effects) with the debate over implanting cochlear implants in very young children born deaf.

That's not curing a disease to restore a person to their former, healthy self, it's 'curing' a condition that will put a person more in line with 'normalcy' but will change their essential nature.

It's an interesting question. I think in reality there would be some risks with this hypothetical intervention, so the decision would (hopefully) be made on a case by case basis by the expectant mother.

I understand why we should consider this carefully...just because a way of thinking is different from the mainstream does not necessarily make it bad or worse.

But...to say you want to give children a different neurological slant so that you can learn something is the height of selfishness. Because while being neuroaytipical isn't BAD doesn't mean it isn't HARD.

EDIT: Also, unlike curing deafness or blindness, Down Syndrome can't be fixed after birth by some cybernetic implants. At least, not yet. With a deaf child or a blind child, you can at least let them grow up a bit and then ask if they want to be able to hear.

missesdash said:

wait is there more than one form of AIDS?
.

Click to expand...

Yes...well, maybe. There are at least 3 distinct serotypes. It's possible that all that does is make it more difficult to diagnose. It's unclear as far as I know if the different serotypes actually translate into different virulences or disease progression.

Zoombie said:

But...to say you want to give children a different neurological slant so that you can learn something is the height of selfishness.

Click to expand...

This is residue from the strawman posited upthread which implied the only reason we wouldn't cure DS was out of our selfishness to learn from people who have DS.

Healers are to heal. Preventing sickness, diseases, deformities, difficulties, handicaps, etc -- this is what healers do. Yes, please do cure that life-hampering/life-threatening disease.

I'm not of the People with DS are special angels of sweetness and light school of thought. They are people. Nice people and shitty people and cute people and rude people and sweet people and sour people. I hesitate to speak for them but I would think most of them would prefer to have a treatment making it much easier for them to work, date, mate, and navigate the world around them safely. It's not about their parents, it's not about being Sweet Inspirational Angels to others, it's about them and their lives.

We treat other conditions causing mental retardation and physical problems in fetuses and infants, like spina bifida, hydrocephalus, hole in the heart, omphalocele, etc, without asking their opinion. I'm not sure how this is different.

rwam said:

It's an interesting question. I think in reality there would be some risks with this hypothetical intervention, so the decision would (hopefully) be made on a case by case basis by the expectant mother.

Click to expand...

The first rule in medicine is "do no harm." If no harm results, then do it. If there is a risk of harm, then weigh it out between physician and mother. But failing to at least explore the possibility of applying a readily available cure is medical (and thus criminal) negligence.

I doubt any of you have ever worked as a physician in a spinabifida clinic. There might be a few nurses who have.

The requirement I gave my girlfriend, now wife and mother of my children when we started dating was, "You have to stop riding motorcycles, stop smoking and you have to take prenatal vitamins if you want this to go any further. Do you have any requirements for me?"

She got the motorcycle and smoking things right off but didn't understand the vitamins since I was Catholic and we were not having sex.

"Just in case," I said. "I do not want one of my kids coming back after 20 years and saying, "You had the knowledge to prevent a neural tube defect and you didn't take measures to protect me?"

Any parent should try to protect their kids, until such time as the kids are on their own or doing things for which they need to take their own responsibility

Plot Device said:

The first rule in medicine is "do no harm." If no harm results, then do it. If there is a risk of harm, then weigh it out between physician and mother. But failing to at least explore the possibility of applying a readily available cure is medical (and thus criminal) negligence.

Click to expand...

Agree. I've never attempted to remove an extra chromosome before, but it strikes me as a procedure that would carry a risk of doing more harm than good. Some mothers may not be willing to take the risk, and I'd be very hesitant to judge that woman or call her selfish.

cornflake said:

These seem entirely different things to me - same as the Hawking thing, which holds to the AIDS/HIV comparison to me.

There's a difference between curing a disease someone gets that affects or changes how they were originally and 'curing' something that basically is part of how they were originally.

The 'curing' Down's thing is more in line (but not the same as DS has cognitive and physical effects) with the debate over implanting cochlear implants in very young children born deaf.

That's not curing a disease to restore a person to their former, healthy self, it's 'curing' a condition that will put a person more in line with 'normalcy' but will change their essential nature.

Click to expand...

I understand the point your are making, but I think the idea of "essential nature" presents far more of a challenge than is suggested by your post, physically and metaphysically.

But rather than bog down there, do you support an in utero "cure" for DS? Put another way, what choice would you make for your own child?

My only point was that different challenges sometimes bring out amazing traits in people. It doesn't mean the challenge, on balance, is to be desired. In addition to some of the other co-incident maladies of DS, one of those "essential natures" of DS is that many are wholly unable to lead a self-sufficient life. How is that a plus?

It may be that the "real cure" for most diseases in the future will involve changing our "essential nature," on a genetic level, before birth. Perhaps susceptibility to HIV or ALS (Hawking) is a removable "flaw." If so, I hope such things arrive before my grandchildren do.

Absolutely we should go for a cure. I don't think we shouldn't because of their lessons for us; I don't think we shouldn't because it's somehow bad to want our kids to be "normal". I see no reason why these kids shouldn't have the right to all the same opportunities and possibilities that other kids have; I don't care how many laws are passed or how many programs are put in place - they will never be able to have the same choices otherwise. Many of them will never be able to have their own life.

What the article talks about is, "silencing," the disease, which is not a an actual cure, because it's a genetic disorder. It's inheritable. If the theoretical treatment worked, it would more likely mask Trisomy 21. Those people would grow up, "normal," and have kids, but the inheritance of the kids would be such that they'd be more likely to also have to have the procedure. It would be sort of how Cystic Fibrosis was viewed 30- 40 years ago. It's something that your kids might get. It's something you have to watch for. It will be more expensive to treat.

Where is my copy of GATTICA?

My youngest daughter is working in a system that provides in- home care for people with disabilities. The system provides each disabled client with a home, job, social life and care givers who are on site to administer meds, help with driving, cooking and bill paying and to see that nothing seriously dangerous happens--like sunbathing when it is 104* outside.

My daughter has worked this type of job since 2007. She has worked in three different "provider" systems. Most group homes in Kansas were phased out years ago. The goal of the provider is to give each disabled adult a home and a job. It takes a huge amount of "care giving" workers to do this.

The job is a tough one and the turn over is big. My daughter should work two 17 hour shifts on the weekend and one six hour evening during the week. This schedule should allow her to pay up front for college hours and get one or two days of substitute teaching in when the school year starts. Instead she is going without sleep to fill in for workers who have burned out and don't show up.

This system she is working for now is head and shoulders above the other two. The workers are well trained. The houses are very nice, well landscaped and the clients (many but not all Downs Syndrome) are more capable of doing their own house work. Still it is like being a glorified house maid with the boss always at home. It is a minimum wage job with few qualifications and there are "behaviors." So workers burn out; some don't last a month.

Behaviors are incidents that showcase anger or hostility on the part of the client: cursing, hitting, spitting, smacking. I know that people like to think of DS as a sort of "human angelification" but behaviors are more common than we would like to think. Granted, not all clients have Downs but the ones who do, even the sweetest, can give in to anger and frustration especially in the privacy of their own home.

Who can blame the clients? I can't. It must be hell to have someone always over your shoulder, shoving meds down your throat for a health condition you can never hope to understand, second guessing your every move. If we can make life more manageable for only a small section of the disabled adults in care systems, why wouldn't we do it?

GeorgeK said:

I doubt any of you have ever worked as a physician in a spinabifida clinic. There might be a few nurses who have.

The requirement I gave my girlfriend, now wife and mother of my children when we started dating was, "You have to stop riding motorcycles, stop smoking and you have to take prenatal vitamins if you want this to go any further. Do you have any requirements for me?"

She got the motorcycle and smoking things right off but didn't understand the vitamins since I was Catholic and we were not having sex.

"Just in case," I said. "I do not want one of my kids coming back after 20 years and saying, "You had the knowledge to prevent a neural tube defect and you didn't take measures to protect me?"

Any parent should try to protect their kids, until such time as the kids are on their own or doing things for which they need to take their own responsibility

Click to expand...

I think men should just bring prenatal vitamins on the first date. Or just write their phone number on a bottle of prenatal vitamins and toss them at the heads of passing, reasonably attractive women.