Earlier Down syndrome test raises ethics debate.

By Shawn D. Lewis
Detroit News
Monday, Dec. 5, 2005


After hearing the news, Christine Spencer sank into her sofa and sobbed.

"I thought my world had ended," she said, recounting the moment she found out that her baby, still five months from birth, had Down syndrome. "I wasn't sure we were the right parents. I called some adoption agencies, and then I found out the list of people wanting to adopt children with Down syndrome was very long. People really wanted these kids. Then I wondered what was wrong with me."

More parents soon will face the same complex decisions but now even earlier -- just 11 weeks into pregnancy. A new test, partly studied at Beaumont Hospital in Royal Oak and recently outlined in the New England Journal of Medicine, is hailed as a less expensive, more accurate and less invasive way to determine whether a child has Down syndrome. But earlier detection is stoking an ethics debate among those who fear it's another opportunity for abortion and a step closer to genetic engineering, where only perfect babies are selected to survive.

"There's no sense in having the test if they're not thinking of terminating the pregnancy," said Dr. Christine Comstock, director of fetal imaging at Beaumont Hospital and the principal site investigator on the study. "But it also provides women with early accurate information they need if they do decide to keep the baby."




http://www.detnews.com/apps/pbcs.dll/article?AID=/20051205/LIFESTYLE03/512050302

I am pro-choice, but a Down's baby wouldn't ever be my reason for an abortion. My reasons, as a 41 year old single woman who loves children, would be limited to rape or a medical condition that would kill me.

Down's children are very adoptable. They are usually happy children who are very affectionate and loving. It is hard to turn away from them. They take a lot of work from parents, but the rewards are tremendous.

Beaumont is a good hospital-some say the best in Michigan, although U of M has an excellent hospital, too.

to have other medical conditions, including severe heart problems. If you have good insurance and can handle the higher probability of having a child who requires more care, it might work out for a family.

As a parent of a child with a developmental disability, I can say first hand that the help we need isn't as easy to come by people would like to believe. It is expensive and not everything is covered by medical insurance. Our family has a very restricted lifestyle, both socially and financially, and it hasn't been easy for our other child. I would not choose this path.

the mother (her daughter) had no problems having a child with downs syndrome---however, she was under the mistaken impression that having downs syndrome meant that her child would be mentally slow. He has a HOST of medical problems that were not known until after birth--he is profoundly retarded, has heart problems, bone problems---none of which she could properly care for. She didn't have good insurance and the insurance she did have was maxed out the first year of his life because of ongoing medical problems.

She wasn't a fit parent for other reasons (drug abuse, neglect, ect), but having a downs child was more than she could handle. She gave custody to her mother who now cares for the child as a parent/grandparent combo. She, too, is on a limited income but she does get $$ from the state to help her with costs. However, his medical care costs are outstanding, and she can't work because he requires 24-hour-a-day care. He's turning 12 next year and is just starting to be on-again-off-again potty trained.

My aunt, and her daughter, both criticize the OB/GYN who never told the daughter the reality of downs syndrome, and the increased incidence of other health problems (aside from mental retardation). The daughter says (and the mother agrees with her) that if they had known the full extent of the disease, she (the daughter) would have considered abortion and the mother would have supported her choice---as much as my aunt loves her grandson (he is the light of her life), his health problems are much more of a burden (that sounds so cruel to say) than they ever expected, and they never had any idea they would have spent nearly $250,000 in the first 10 years of his life. And they had no idea that his retardation would be so profound, and now my aunt worries about what will happen to him, and who will care for him when she passes away, as there is no chance he will ever be able to live independently in any way, and the preliminary costs for nursing homes is just astounding.

My family is not rich by any stretch of the imagination. Like you, my aunt lives a very restrictive live. Because there is no one that can properly care for her grandchild, she cannot go to the movies, or out to dinner, or otu with friends. She has no job and has to make do with a small pension from her job as a teacher as well as SS and food stamps. She hasn't gone on any type of vacation outside of her home since she became his guardian, and she's definitely getting "Caregiver role strain".

She has pushed for legislation in her state that forces Dr's to be more upfront and truthful about results of genetic testing, as her daughters doctor was not truthful at all and gave them this rosy picture of a slightly slow child who would be independent and have no problems in life other than being slow to learn to tie his shoes, learn left from right, etc. As it is, this chidl cannot talk, cannot communicate, and has major health problems, and they wish they had been advised of that before the birth of the child.

medically ill these children can be, and the test, last time Ihad prenatal counselling, cannot discriminate in the severity. I feel your aunt's pain. I worry for both of my sons, one for his disability, the other for the burden he will eventually have to take on as his decision-maker.

OB-GYNs have no business doing the genetic counselling. That should be done by the counsellors within the lab the runs said tests.People need complete information about what they are facing, not some doctor'slimited knowledged clouded by hopefulness. I have not found many doctors to be objective on these issues, either.

her "genetic testing and counseling" was done by her OB/GYN in the county health department where she was getting her sporadic prenatal care.

My aunt's biggest problem is that she was there when the OB told my cousin that the child had Trisomy 21, and that all the MD said was "there will be mental delays, but nothing too severe other than that" and just left it at that---my Aunt used to be a teacher long ago and thought that sounded kind of...sugar coated, ya know. So she did some research and found out about heart problems, lung problems, etc, and confronted the MD about it, and the MD told her in no uncertain terms that She (my aunt) was over-reacting and "finding a reason not to love this child"----and totally dismissed the idea of correlating medical conditions.

Both she and her daughter understand that you can't determine the severeity of the disease, but they were completely unprepared for the plethora of related medical problems that came with the downs syndrome itself, and feel that because the daughter was going to County Health and getting Dr's paid by the state, that they (the MD's) were doing everything they could to disuade women from getting abortions so that way the state/county wouldn't look like they were "pushing" abortions on poor women.

My aunt is up to her neck with this kid, and again, she loves him and he's the light of her life, but she has no support system, no one to help her out, and she's his only form of support at all. What happens when she "goes" is up in the air--he does not react well when in the company of other people without her around--in fact, he's inconsolable to the point of being self and other destructive. Even his own mother/aunts (her sisters) cannot be around him without my aunt there because he just will not have it.

It's a great burden on her and she wishes that the MD had been more forthright from the beginnign so that they would at least have had an IDEA what they were getting into--especially knowing her daughter's history w/drug abuse, etc, and that not only was she not really prepared to be a parent to ANY child, but certainly not the parent to a special-needs child with related physiologic health problems as well.

It's tough, because when she expresses this opinion, she's called a baby killer, a nazi, in favour of eugenics, etc---she's not that at ALL---however she (and I) feels that every family's situation is different, and had they had all the information up front, with a realistic picture of this child's future, they may have made other decisions, and that every family is different and a family that lives on $10k a year might not have the same resources to care for a special-needs child the way that a family that makes $200k a year does. Health insurance doesn't cover everything, including child care and stuff like that. She had to go to school to be a nurse's aid just so she could care for him competently because the state wasn't going to pay for the $200-per-day cost to have an at-home nurse with her when he was an infant and needed the care.

medical advice based on a political agenda instead of the medical facts. They were victims of this deplorable system. God, I wish I could change these things, including getting proper medical care.

Yeah, lots of people are fine with not having elective abortions for these situations until they have to actually live this reality.

The odd part is that the people who understand these children the best, their teachers and therapists, are the most sympathetic. Yet they have to deal with them so much that I wouldn't want to push my child off on them for my respite.

We are spending an ungodly amount of money for ABA training to help our child get over some rough spots right now. This isn't easy.

unfortunatley, I live in a very republican/right wing part of Washington State and I made the grave mistake of wearing my NARAL/Pro-Choice lapel pin to the hospital one day (it's not in-your-face, very small, and you can only see what it says if you're standing 2 inches from my boob), and one of my fellow students asked what my pins were---some were for breast cancer, others for ovarian cancer, others for prostate cancer, and this ONE pin, the smallest of them all, was for pro-choice legislation. Boy, I got a bunch of shit about that from my fellow students, my instructor (a born-again fundamentalist) as well as some nurses.

THeir attitude was basically "how can you be a nurse and believe it's okay to kill babies?"--of course, I didn't answer because I don't believe in "killing babies", but truth and fact never got in the way of an anti-choice agenda :eyes:

We had an in-class discussion about "ethical choices for elective abortion" and the teacher (at the time) was a very open minded, democratic, pro-choice nurse/educator. There were people in my class that said an abortion is NEVER ethical, and when the situation regarding special needs or profoundly disabled children was raised, you'd have thought that the teacher was suggesting that we all go out and FORCE abortions by the way the class acted. I was embarassed for these people, to be so rich on opinion and so poor on facts. When I related the story of my aunt and her grandchild, and how she wishes that more information had been given to her and her daughter while the period for abortion was available, my classmates nearly hung me. Called my aunt a murderer, said she hated her child, said that my cousin was a slut for getting pregnant and not wanting to deal with the consequences, and that god had "cursed" (their words!) my family with a downs child to show us how greedy and sinful we were ???? :wtf: That made no sense, but only showed how narrow-minded people are until they're in this exact situation.

It's tough, because I'm sure as a parent (i am not one), you always want the best for your child. Is it unethical to think that your child will be best served by being aborted> Knowing that you haven't the werewithall to properly care for him or her? Knowing what the future holds as far as care and responsibility for that child? Knowing that if you die, the State will have to care for your adult child and often the care for adults with profound mental disabilities is far from 'the best' when handled at the state level. They're put into lower-level nursing homes and treated as objects instead of people.

My husband just went through nurses' aid training and had to do a clinical experience at a state-run nursing home for 'wards of the state' and it was the most dispicable place I've ever seen (and I've worked in a few nursing homes). It reeked like a toilet, the patients were wheeled out and put in front of a window to stare into the parking lot for 12 hours a day. There was no entertainment, no enrichment. Just sit and stare and shit and eat. It was much more depressing than nursing homes generally are, and I realized that this could very well be the place that my cousin ends up when my aunt passes on (many, many years from now hopefully).

We really don't do very well for people in this situation. The state really has no vested interest in providing quality care for them in many instances. The support for family members dealing with this is lax, educational opportunities and job-skills education are limited, and it's as if the state ENJOYS creating situations for families like mine and yours, where we're at our own mercy and hope that some magic option suddenly presents iteslf because that's the only way (besides being millionaires) that we can ensure that the most fragile members of our family, and of society, are properly cared for in a compassionate way.

:hug:

was one of the most stressful times in my life. Our exams in school were the hardest I'd ever taken, and I have another degree in finance. But I passed on the first round,minimum number of questions (hurray!).


Stay at it! And don't think those nurses and students represent most of them out there. Most nurses I know, even here in red state texas know better than to be so judgmental about situations like this. I do't think they'll make very good nurses if they have that kind of attitude.

Association for Retarded Citizens. They may be able to help her get low-cost assistance. The schools in Michigan are responsible for education of the developmentally disabled until age 25, her state may have similar policies.

Has your aunt applied to receive SSI for the child? Down's is one of those clear-cut conditions for eligibility. It would give her medicaid coverage for the child, too. If she didn't need all the money to care for him, she could put some aside into a trust for him every month.

When I said I wouldn't abort a down's baby, I wasn't judging those who would. I do have good insurance and make enough money to deal with some of the special needs. I recognize that many people don't have those things, and I don't think women need to justify their reasons for having an abortion to anyone but themselves. I'm just saying that I wouldn't do it, because I don't have any kids and would like to have a baby, but never found the right man to marry. For me, the husband comes first.

for him, but I'm not exactly sure. I do know that she gets like $1,000 from the state every year for being a family-care-giver---I know she has custody of him, but I don't know if their situation is like "adopted/adoptee" or a foster-family type thing, but I do know that she gets state $$ for being a family caregiver.

I'm going to send her a link to this thread. if nothing else, I think it will help her know that she's not alone in this situation.

Thanks for your help!

heddi :)

for this real life look at mental retardation .

Until this country provides complete support for all parents, and people don't have to bankrupt themselves, give up their jobs, ignore their other family members, and make themselves sick from stress to get their special needs child medical care, physical therapy, an appropriate education, or a day off from 24-7 caregiving, folks can poo-poo those who would abort a fetus with DS need to shut the fuck up. You hear too many stories about people who had to give up custody of their child in order to get the state to pay for care or who would wonder how they were going to take care of a disabled sibling after their parents died, since they were living on the margins as it was.

that they must carry and raise a child who may have incredibly high needs. And I am not speaking from the point of view that I would abort a Down's syndrome baby, because I would not. But I have a very good friend, a wonderful person and mother, who said that if her two children were found to have Down's, she just couldn't do it.

Who am I to judge what one can handle? It is so personal.

conditions.

Some downs are better off than others.

I have down syndrom in my family and I was wrongly diagnosed with it when I was born - back in the 60's.

I was diagnosed with it because my stomach wasn't fully devoloped and my face was up instead of headbent down when coming through the birth canal.

Obviously I didn't have it so I was lucky.

My aunt died in her 30's with it.

There's just more to it than kids with far apart eyes that act slow.
I would abort a child with downs. I would abort a child with any severe defect like brain damage(downs gives them 1 extra chromosome and results in retardation)

I am pro-choice with no desire to abort my own kid, but I'll make a concession. I would not conciously bring a kid into the world who couldn't take care of itself.

My wife and I had this discussion and I said if we could find out if the kid had Downs I'd want her to have an abortion. She is pro-choice, but was clearly not interested in that kinda talk.

In the end, after the ignorance was washed away by chance meetings with these people I kicked myself forever wishing not to have one.

These kids bring nothing but love and joy to everyone they touch. Now, they aren't the next Einsteins and their lives don't hold the promise that most do, but if they bring a little bit of light to the world then their existence is meant.

Put it this way, I've never heard of a kid with Downs shooting up a high school, torturing animals, or bullying those that are smaller and weaker than they are. Maybe we could learn something from them.

I'm glad my baby days are over. It would be a hard decision for me after seeing what my Mother-in-law goes through with her 55 year-old daughter. I'd think twice about it.
(Of course, she could dump her on the state on in a home )

In my opinion, this is a matter of personal choice, and that choice rests with the parents and their doctors. A test is available, and doctors do perform abortions for this reason. People may still debate the ethics of it, but it is already taking place.

If you have a child with an impairment/handicap it will be put on your other children to care for. Is it fair to decide for another child their role in life? My neighbor has a down syndrom daughter who is in her 30s now. He just passed away last year and his only other child is fighting tooth and nail not to be the one responsible for her sister. The impaired sister is at a level of about 10 yrs old, has many physical problems and will never be able to be independent. The father never had her trained/educated properly. The other sister is married with children living in another state. Should she be shamed into caring for her sister? She had no choice in the matter. Is this fair?

Touche, Trixie. I had a friend who found herself pregnant with a Down baby and she already had two children. A big part of their decision to abort was based on the effects this child would have on the first two.

To the person who said - "These kids bring nothing but love and joy to everyone they touch." What nonsense. Get a puppy.

...if you're going to abort at all. Late term abortions are not cool.

And remember, for the sake of perspective, people abort pregnancies just because it's not the right gender, they don't like the father, it's not convenient to be pregnant right now, can't afford the medical costs, etc, etc.

This case hardly stands out as egregious and it seems to me to be more reasonable than many other purposes for abortion.

Of course, we could always legislate against it and hand the woman a coat hanger.

Is this still a liberal board?

I don't see any ethical dilemma with this test at all. The earlier, the better. Woman that decides to abort Downs baby certainly shouldn't have any less rights than a woman that decides to abort a perfectly healthy baby for whatever reason.

or for gender selection, etc.

Do we legislate against it? Not just No, but HELL NO. The analogy I use is this: Many people abuse the privilege of driving by driving drunk, drugged, what have you. Do we therefore ban the automobile? Of course not.

This is an ethical debate worth having, not (one hopes) a legislative one (in which the anti's would again try to co-opt the disability community :grr: ).

edit: punctuation

What indications would you support abortion for? Pro-choice means you support abortion..so it's not ok to abort a child with down's syndrome, but it is....if it's 'not the right time' in a woman's life?

I'm just curious...I actually have a very tenuous pro-life stance...I believe abortions have become much to acceptable as a means of contraception and that we have become less and less responsible for our sexual habits. I've met too many people who have had unprotected sex and then an abortion as a late form of birth control.

I would support abortion in the cases of down's syndrome, danger to the health of mom or rape, etc.

Anyway, I'm just curious.

edited to add: I have a friend who has a son with a similar disorder to down's....he has a huge head and normal body...and the mental status of about a 5 year old...even though he's 19. The mom has cared for this child and her two older boys her whole life and there is no end in site. She worries about what will become of him when she dies because he will never be capable of functioning even at a basic level..and both of the brothers have also said "no way"....though many people have tried to guilt them into becoming the caregivers.

It means you support a womans right to CHOOSE to abort. You may be dead against abortion while supporting other womens rights to choose.

There's nothing carved in stone there.

a child because this child has Downs syndrome, no?
I mean, you say you support woman's right to chose. Then, if woman choses abortion because the child has Downs, you have to support that as well. Or what exactly do you support? Right to chose for some specific reasons only?

As I have said many times.

Your general statement is what I was answering.

Having spent years on feminist boards I'm pretty informed on what pro-choice is.

Many women who are against having an abortion, are still pro-choice. They retain the right to CHOOSE. When someone is willing to give up their right to choose - ie make abortion against the law so there is no choice - then they are considered "not-pro-choice". The MS boards(now defunct) had an excellent faq that covered this.

As far as picking and choosing instances for abortion; most women do. However, that is not relative to someone saying - prochoice means she supports abortion. Wrong. It means she retains the right to choose. She will vote to keep abortion an option.

Many women who are very against abortion will also vote for abortion to let other women have the choice. Again, they are pro-choice.

I do, however, recognize ethical twists, especially in this area. I would hate abortion to be used extensively for gender selection, retardation, or developmental disabilities though. I can understand severe birth defects and terminal situations. It's all a fine line.

back in the 1950s. My cousin, with the help of special schooling his PARENTS provided, was able to get a low level job and travel to it on his own. HOWEVER, since his parents were in their 30s when he was born, by the time he got into his 30s, they were in their 60s and it was becoming a problem for them to keep him at home. My aunt died when he was 35 and both my uncle and my cousin both had major medical problems when they were pushing 40 and 75, respectively.

My uncle and my cousin both died within 6 months of each other. I think a LOT of people fail to see the long term consequences of this.

it seems more ethical to have this earlier abortion possible.

It's easy for others to smugly say it is wrong or they would never do it, but it's another thing if you are in that situation.

My sister tortured herself over it. It wasn't that she felt the child wasn't worthy of life or love but the facts of it all were hard. As it was her kids sometimes went without insurance, how would she handle the medical issues? She couldn't quit work to care for the child and special day care would eat up so much of her salary, she was raising other kids. She was over 40, if the child was healthy enough to outlive her did the burden go to the other children, or just the guilt of choosing not to care for the child?

She hadn't been expecting a pregnancy at all but birth control fails. She made room in her heart and was willing to juggle things. But with the news of Downs Syndrome she just didn't know how she could "juggle" that without hurting others who depended on her.

She made the best choice she could. She had a private ceremony to honor her child and let him know she was sending him back with love. She asked for anesthesia in case the fetus could feel pain at that point in the pregnancy. She grieved. She still does, she still questions if she was being selfish.

In another kind of country where there was health care, there was support for families, she might have had a choice. In this case there were no good choices.

Good for her.

They also have a "normal" one who acts out, probably because his sister requires so much of their parents' time & attention.

A special needs child affects the entire family physically, emotionally & financially. Their care is unbelievably expensive. Most day care facilities won't accept them, & not all of them can be mainstreamed. Many of them will need to be cared for their whole lives, & who will provide that care? What happens when the parents die? That's the main reason I would end the pregnancy if that ever happened to me. I think it's great that so many people would welcome a special needs child, but I know I could never handle one myself.

It seems that the same ethical situation would be involved.

I for one would not opt to bring that baby into the world.

:bounce:

I am astonished after reading through these. I read stereotypes and insensitivity. And worse than that, I am amazed at how few people here have any concept of what life is like for people with disabilities. Many people with Downs and people with no upper or lower mobility live on their own now and have jobs.
I read several posts with personal anecdotes which were supposed to mean that a person knew something about these situations on a broad level.
I'm all for choice. Personal choice has nothing to do with whatever personal anecdote anyone wants to come up with because the choice about whether or not to have an abortion is based on personal life factors. We hope!! If not we are talking about eugenics.
I think some posts seemed to indicate that people thought that an abortion would be the appropriate decision in ALL cases with a positive test, or something along those lines.
I'm pro-choice because I think reproduction is a personal issue. There are people who have a personal lives making those decisions. They need to match up all their data themselves. If a person makes an unconditional judgment and assumption that there is only one thing to do, it is indeed eugenics.
The ethical considerations are real and the person who is truly pro-choice will say that it is up to the person.
As a society, we must be very mindful of the potential negative influence that an increase in abortions of embryos that test positive may have on the perception of existing persons with Downs as well as every person who has a cognitive disability of some other variety, including those acquired in accidents, etc.

Many women abort perfectly healthy babies. It's their choice, right?
Then WTF shouldn't people have a choice whether to have a disabled child?
Frankly, I would not want to care for a severely disabled child.
It's extremely difficult, many families break up when they have disabled children, it's expensive, it's emotionally draining. I am not cut out for this.

I was referring to posts where people had evaluated other people's situations and suggested that they had answers for that.
If a person doesn't see a possible ethical dilemma as the possibility of assigning relative value to individuals is exacerbated in this country, they are ignoring a myriad of factors in this debate.
My point was that it might be worthwhile to remember what it means to be pro-choice, and be sure that this is a choice that is left people who are actually dealing with it personally, or risk getting into an unfortunate debate.
When hypothetical discussions take place on this subject, you implicitly get into territories such as eugenics and it is impossible to ignore the ugly fact that there is something very ugly being said about people who are currently living in this world with these disabilities.
Having a hypothetical discussion of abortions of an unknown fetus is one thing, but when you get into discussing abortion a particular group is something else. Remember the reaction to Bill Bennett's comments?
Yet, somehow people have knee jerk reactions thinking that person is anti-choice if it bothers them........ unlike after Bill Bennett's comments.

Same struggle different difference
.......except even the progressives don't get it yet.