Saturday
Jan152011
How many dates before you request prenatal genetic testing?
Saturday, January 15, 2011 
It can be devastating to learn that your child has a disease, whether it is a deadly one, a potentially deadly one, or one that will impact her daily life for the rest of her life. There is already a lot of controversy around prenatal screening and diagnostic tests that can be used to test for possible congenital, genetic or chromosomal conditions because of the fact that some parents may choose to terminate the pregnancy because of the test findings.But what if you could find out much earlier?
The developers of a new test, described in the NPR article New Gene Test Screens Would-Be Parents, will allow couples to be screened for up to 580 disease genes to find out if they are carriers or not. Apparently the average person carries two or three mutations that could cause a severe childhood disease and if their partner carries that same gene, then the risk of having a baby with that disease is much higher.
The developers of the test are promoting it as something that couples would use prior to trying to conceive a baby. Apparently in some instances, there are measures that could be taken to ensure that the couple won't have a baby with a particular disease (this has apparently been successful in eliminating Tay-Sachs in people with Eastern European Jewish Ancestry). In other cases, I guess the information would allow people to consider options like adoption, egg or sperm donors, or opting to remain child free.
But will it go further than that? Will tests like this one day play into our choice of a mate?
To some extent, genes probably already consciously or unconsciously play a role when people choose a mate. People may look for a mate who is equally attractive or equally intelligent and certainly genes play a role in those types of things. But will people soon start requesting this type of genetic testing before things get too serious? Why not go for testing for sexually transmitted diseases and genetic conditions all before the third date? Or will we one day use an iphone app containing our DNA profile so that it can alert us of potential good genetic matches or warn us of potential bad genetic matches before we even say hello?
Is this taking things too far? I'm not a religious person, so concerns about humans "playing God" don't really concern me. However, I do believe there is a lot of value in the plurality of the human experience. I think that our world gains a lot from the different type of people who grace the earth and I think it would be our loss if we started eliminating certain types of people because they are less genetically desirable. I'm sure there are many parents of children with genetic conditions who wish that they didn't have those conditions and that they didn't have to suffer. However, if the alternative was not having ever met that child at all, how many would choose that option?
I'm an early adopter of technology and I support medical advances, but I find this a bit scary. What will happen to us if people start choosing a mate because of their genetic profile rather than because they want to wake up next to that person each and every day for the rest of their lives, even if it does mean waking up to care for a child with a genetic condition?
What do you think?
Image credit: shannon abigail simbulan on flickr
Reader Comments (52)
For dating, I'm more likely to be concerned about STDs. After we are together long enough to decide whether we want to raise children, then I'd consider genetic testing if we had risk factors (maybe even if we didn't, if it were easy) but it wouldn't be a relationship-killer to me if my mate couldn't be a biological parent, or I couldn't. There are other ways to start families, including basic adoption.
I agree with you that it is a little scary... I know what I would do, but I also know that what I would do is not what many other people would do. I would do about the same as the above poster- maybe get tested late in the relationship, possibly even after marriage, not to exclude the person as a partner, but to make a choice as to how to bring a child into our family. But I also agree that certain people bring more to the world because of the hardships they have endured. I'm torn on that, though, because it would be devastating to me to be pregnant and find out the child I was carrying had a deadly chromosomal disorder or debilitating lifetime conditions... I wouldn't terminate, but it would be really really hard to deal with... to a point that I can't even imagine, I'm sure. However, who are we to say that these children don't deserve to be born? Even a life that only lasts a few hours can make an impact and have value. It's a tough one.
But, as I said, I know many people who don't feel the same. Unfortunately I know (of) several people who terminated pregnancy for non-lethal issues like Down's Syndrome. So while I know it wouldn't significantly affect the way I live my life, I would be afraid that people would misuse the test. Like I said, it's a tough one.
I am a religious person, as you know, but I don't think that this is "playing God," per say, I think the same way that you do: this could rob people of profound experiences they'd never have otherwise. Life in its full scope is extraordinary, heartbreaking, delightful, and diverse. Do we really need to demand control down to that kind of level? And what will we lose because of it?
Did you read the story recently of the Australian couple who aborted twin boys because they wanted a girl instead? A girl to replace the baby girl they'd lost? Not only was I upset because it's clear that the parents need intense grief counseling, but I wonder how their lives would have been blessed and joyful with two boys they didn't know they needed.
Some of the most amazing things in my life have happened despite me wanting something else. I feel like this is a scary step to take because it's not just limiting what children will be born, it is limiting our personal growth.
Brand is - I have several friends who have Down Syndrome babies. One completely owns up that her Downs baby is her favorite child (haha) The other wrote a searing and moving book on discovering, at birth, that her child had Downs (it's called http://www.amazon.com/Year-Son-Were-Born-Self-Discovery/dp/0762750618" rel="nofollow">The Year My Son and I Were Born.) None of my friends wish they'd terminated.
I wonder about the accuracy of the tests and I dont know if I would want to know if myself or a mate had these potential problematic genes. It would be something I would always wonder about 'did i make the right choice' b/c the test is predicting odds: "could cause", "higher risk". It would raise a lot of doubt for me. What if you and your mate never had your own biological children, and they would have been fine or otherwise been amazing additions to your family? What if the "risk factor" was 50/50 so you tried and had a child with an illness? Would you always blame yourself?
If you can eliminate Tay-Sachs, what other "undesirable" genes could be eliminated? Short? Fat? Tall? Red Hair? IQ of a certain number?
Food for thought. Just because I wouldnt' do it, does it mean others shouldn't have the choice?
This is interesting. I just watched the movie "Two Lovers" last night with Gwyneth Paltrow and Joaquin Phoenix. In it, Joaquin's fiancee leaves him before the wedding because they both tested positive for Tay Sachs. I wonder if the Jewish population has been dealing with this situation for a while, because of Tay Sachs, and if they commonly know whether or not they carry this gene and ask a date whether they carry it too. (The movie implied that it was the women's parents who actually made them break up though, so parental involvement in finding a mate was also an issue in the movie) If having children is important, I can see why it might be advantageous for some people to know and ask about certain genetic issues before they get serious. However, from my own experience, I didn't start thinking about children until I found the "right" man.
Very interesting post. I can speak to this as a mother of a son with a potentially life-threatening & rare genetic disorder (VLCADD). With genetic disorders that require a double mutation to be positive, you know that any child you have has a 1:4 chance of having the disorder, a 2:4 chance of being a carrier, & a 1:4 chance of being completely unaffected.
Had I known my husband and I were both carriers, I probably wouldn't have married him much less have a child with him. In fact, I probably would have used that as an excuse to never get married or have children (yes, there are deeper issues here lol). Now, I can't imagine my life without my family exactly the way it is...hospitalizations & all.
We have the option of IVF to prevent implantation of any affected embryos or testing in utero to find out if a child I'm carrying is affected. The more I think about it, the less likely I am to do either. The shock of finding out my son has a genetic disorder caused the worst day in my life but I have subsequently learned that this is manageable and my husband & I are capable of handling it. I had to handle it for 7 months by myself thanks to the Navy.
As much as I would love my son to be perfectly healthy, I would not go back & change anything. I suppose I might feel differently for disorders that have a more pronounced detrimental effect on basic quality of life...but I don't know for sure. I definitely don't have anissue if people choose to utilize this testing when choosing a partner but I could not & would not do it. My life is richer & fuller with my husband & son in it.
You mentioned in your post that genetics may already be playing a role in who we pick as a mate. There have actually been lots of studies on human scent and how we are attracted to those people who have different genetics from us base on how they smell. To me, these tests just take something that we already have a natural mechanism for and replaces it with a test. Obviously that mechanism in nature us not without flaws. But a test would have it's flaws too.
Reality is that life is complex, random and impossible to control or predict. I don't have a problem with these tests being available. But for me, I wouldn't use them. I understand some would feel it could help provide information to make a different choice, but I would rather follow my gut and let life bring what it may.
Dana K:
I actually have a rare genetic condition that follows that same pattern (double mutation = 1/4 affected ,2/4 unaffected carrier, 1/4 completely unaffected). I have 3 siblings and none of them have the same condition. Neither of my children have it either (I don't know if my partner is a carrier or not). The condition that I have sometimes causes complications (from minor to major) and sometimes has no complications at all. I don't appear to have any complications at all. Perhaps that is one of the reasons that this story interested me and scared me so much.
Thank you for sharing your story.
"Do we really need to demand control down to that kind of level? And what will we lose because of it?"
THIS. Exactly. No, we don't need to demand control to that level, IMO.
That story about the Australians is awful. I am 100% pro-choice, but things like that do sadden me.
There are numerous reviews and studies of sex appeal that affirm that our selection of a mate is, in large part, determined by genetics...without our knowledge. We TEND (nature is not without anomalies) to select potential mates who have an immune system that complements ours, whose scent and mobility (i.e. hip swaying) we find attractive, whose voices we prefer and whose complexions we find appealing (although I've also read some studies that point to men finding female complexions, scents, movements, voices, etc. that are otherwise unappealing to them appealing during, say, ovulation). Most of that is determined - at least in part - by genetics. For example, women are more scent-motivated than men in most cases. Women tend to find the body odors of their male brothers, fathers, sons, grandfathers, grandsons, and sometimes their nephews and uncles repugnant. They also tend to find the body odors of men who have immune profiles remarkably similar to their own less attractive than those of men whose immune profiles complement their own. I'd say that's probably genetically determined to some extent.
I personally trust my body and trust nature. My husband and I may very well be at risk of bringing a baby into the world who has genetic abnormalities. So what? Our lives would be richer for that experience. We selected each other for a variety of reasons, and genetic profiling isn't the only biggie. We are compatible in other ways, ways that you can't tell on a genetic profile test. We didn't test for genetic problems in our pregnancy with our daughter because we believe that part of parenthood is accepting every challenge and embracing every child as they are, as our parents did for us. So I don't see us ever using this sort of technology or encouraing other people to do so.
I do not, however, mind if this is the sort of thing that other people want to use to determine how or with whom they would like to bring a child into the world. I don't agree with abortion, for example, but I believe that every individual has the right to govern their body. Every individual also has the right to determine their own breeding priorities and use the technology available to them to craft the experience they feel is most suitable for their family. I don't agree with designer families, but who am I to tell someone else what they can and cannot or should and should not do?
A big part of my reasoning for not doing the IVF is that I don't ever want my son to think I would have chosen not to have him had I known he had VLCADD.
Very reminiscent of Gattaca, isn't it? (That was a brilliant film, I still think).
I guess my concern about this is a downstream one - if more people have and begin to use the technology to effectively prevent some (or most) genetic conditions entirely, what impact might that have on the perception, treatment and care of those children who are still born with genetic conditions, either through chance or through the parents' decision not to have testing performed? Related to that, will we ever get to the argument that people have a *responsibility* to prevent these conditions?
I think in particular of two cases. The first is my own family, where my brother was born with a serious and rare genetic illness that rendered him very disabled and led to his death at age 8. My mother was put under great pressure to terminate her later pregnancies on the basis that any further sons she had would probably have the same condition. She lost two pregnancies "naturally" (ie to first-trimester miscarriages) but the third pregnancy became my youngest brother, who does not have the condition and is now a healthy 30 year old man. My mother's point, though, wasn't just that she thought it wasn't a lockstep - she also believed strongly that my first brother's life had value, that he was a loved and cherished member of our family, and that taking the "risk" of having another child with the same condition was not a terrible thing.
The second case is a good friend of mine, who has the Huntington's Disease gene change (although she is not yet at all symptomatic). She and her first husband divorced several years ago and one of the key reasons was their disagreement on using prenatal screening to identify embryos with Huntington's (he wanted to, she did not). She now has a 2-year-old son with her second husband. Her son, conceived and born without testing, may or may not have Huntington's - only time will tell.
Her view is that her life has a value, to herself and others, that isn't reducible to her genetic status, and that, for her, to screen out embryos was effectively saying that a person with a genetic condition was less of a person, less "perfect", less complete, than a person without.
I understand that others' mileage may vary on this and I also firmly believe in bodily autonomy, which must include every individual's right to make decisions under what circumstances they will engender or carry a baby (including what preconditions they need for conception).
My personal view, though? It has the potential to lead to a cold, less compassionate, and less diverse world. And it's certainly not something I'd ever consider.
I think it's a big jump to go from testing for genes to choosing partners solely based on those genes. Choosing whether to mate with that partner as opposed to adopting or remaining childfree based on the possibility of conceiving a child with a disorder? Yes, I can see benefits and drawbacks to that; though, not enough negatives to consider science shouldn't continue its forward march.
I am in support of tools which help individuals make decisions about their lives. Now, if those same tools could potentially be used for governments to make those decisions about others' lives (i.e. the film, Code 46)... that's crossing a scary line.
If you haven't seen the Science of Sex Appeal documentary Kathleen & Sarah refer to above, it's worth a view.
I think of this somewhat differently. An analogy: I would perhaps choose to abort if I was pregnant with a third child. The third children I know have fulfilling lives! The parents I know with three children find joy and meaning in all of them! But for me, for my own family, that's not the choice that's right for us. And knowing that, I would not have married someone who definitely wanted a large family (just as I would not have married someone who didn't want kids at all).
Almost nobody has as many kids as they could possibly have; every child they don't have is someone who would have been a valuable human being, enriching the lives of those around them. I don't think there's anything wrong with trying to get your own particular children to be boys, or Deaf, or blue-eyed, or straight, or able to walk, or less likely to have your stupid hayfever, or whatever other serious or trivial thing you might try to select for, as long as you understand the odds of it working and are prepared to parent your child even if your selection attempt fails. Diversity of population is best maintained through diversity of preferences, not through denying individuals pursuit their preferences.
To answer your question - it is common in the Jewish community to get tested for Tay Sachs before you get married. Most local JCCs or other Jewish organizations will even help pay for it if the couple cannot afford it. It is greatly encouraged.
I understand people have different points of view, but I think that realistically, nothing is going to stop science, for good or bad. Some (hopefully many) people will use this test wisely, but there will sure be those who will abuse it, just like there are now.
I'm definitely pro-choice but personally, if I am given the option to know BEFORE I get pregnant, that's infinitely much better than having to make a horribly difficult choice while already pregnant.
I got tested for CF carrier when we found out my nephew had the disease. I simply felt it would be totally irresponsible to have such a mutation in the family and NOT get tested. The key is to know, and then to make a conscious decision, to test the partner, to decide together. There are options, and one of them is to conceive naturally despite an increased risk and be fine with it. But every parent has to decide this for themselves. Bear in mind how many people in this country continue to have no health insurance - how would you want them to deal with a genetically sick child? Also, not everyone gets pregnant within marriage or relationship - some couples choose egg or sperm donor for fertility reasons, maybe for genetic health reasons, some single moms choose a sperm donor too. In those cases to have these tests available is important enough that I would expect them to be part of the "classic" STD and genetic disease carrier program that is already routine. And I think that's great. I'm all for diversity, sure, but tell that a parent who finds out their child won't make it past the age of 10 and I think it sounds rather inappropriate.
Interesting post... I'm a genetics researcher and I've spent a lot of time pondering similar murky ethical waters. I'm going to play devil's advocate here.
I believe we've already gone very far thanks to advances in technology/medicine/genetics - keeping people alive past their biological limit, allowing children who otherwise would have died hours after birth to have a chance at life, etc.
In many more traditional societies, *twins* were not even viable: parents were forced to choose one of the babies, and let the other die. Genetic anomalies were way too costly and those babies were left to die (if they hadn't already).
So... now that we have the technology to keep such otherwise non-viable people alive, is it not just an extension that we develop the technology to potentially decrease the chances of this happening? Isn't this just an 'evening of the score', evolutionarily speaking?
Amy:
I understand the analogy you are making, but I think that choosing to have/not have a child with a genetic condition is different from choosing to have/not have a child with a certain eye colour, birth order, or gender. I think diversity of preferences would take care of a lot of things, but I do think more people would be likely to opt against genetic conditions than would opt for them. In the end, that would make some of those conditions less likely to occur, but would also make people who are carriers of those genes less desirable as mates.
My husband and I had the option to screen our sons, because I have a life-threatening, autosomal dominant genetic disorder. What it came down to for us, or at least a big part of that decision, was that I'm glad I'm here. My parents had no idea that I'd have this illness, but what if they'd could have known? My life is harder in some aspects, but it's rich and I wouldn't want to change any of it. I love the experiences I've had, even the hard ones. Will my younger son, whom we learned inherited the disorder, think the same way? I hope so. One of my fears is that he'll grow to wish we'd used the technology that was available.
On the topic of government making those decisions for us - there are still states in America that require AIDS testing before people get married. They feel that they have a responsibility to the people and be sure that all parties know. I can see the logic in this but I wonder if this type of genetic testing will one day be required before marriage. Will the government state that people NEED to know? I have no idea but sometimes I think science can be scary not so much because of the choice to use it but because of the fear that it will become required. Just a thought.
Carla:
The lack of health care certainly is a problem. I'm thankful that isn't an issue where I live (Canada). However, families who have children with disabilities still do often struggle financially because health care costs are not the only costs they are dealing with.
I am really enjoying reading all the comments here! My friend Ellen is actually writing a book on this subject (though from a religious perspective) and has posted a few stories on her blog from those who had illness in their family did and did not choose to use reproductive technology. I think she's still looking to interview a few more who did choose preimplantation genetic diagnosis actually: http://choicesthatmatter.blogspot.com/.
I can definitely see your point of view. But having been witness to the extreme pain that a beautiful little baby I know lived with for 8 1/2 months (as well as the extreme emotional pain of her parents), I think genetic testing could have its place. It's one thing to choose not to have a child that isn't "perfect" but quite another to choose not to create life for someone who will live in constant pain. Sure, ask this baby's parents if they never would have wanted to know their sweet little girl and they would say -- of course not. But ask them if they'll do fetal genetic testing/IVF or other measure to avoid any future children living with this terrible, very painful rare disease (with no chance of living without pain and until adulthood) that their daughter suffered through and they would say -- hell, yes. It would almost seem cruel to do otherwise.
I heard this story on NPR the other day while I was in the car. My first reaction was sadness. I wonder who this type of testing is supposed to benefit? Is it the child who would have the disorders? The parents of the children? The community as a whole? While I understand (to the degree that I can while not having been through the experience) that if an unborn baby had certain diseases and disorders some people would terminate a pregnancy. I'm not quite clear about what it is that would lead someone to choose termination in the event of a disease or disorder that would probably (but possibly not) affect a person's quality of life and lifestyle. Is it that the parents would be trying to spare their child from a hard life? Are the parents concerned that they themselves are not strong enough to support a child with a disability or disease? Are they afraid of what society would say or how society as a whole treats those with disabilities?
From my personal life, my husband and I did not undertake any kind of testing during our pregnancies. We simply did not want to know while we were already pregnant and we therefore made the choice to live with the outcome -- whatever it may be. But had someone asked me before we began "trying" if we'd like to do some kind of simple test, I could actually see myself considering this option (although I can't speak for my husband). But whatever the outcome of the test, I'd keep my husband!
As several commenters have already mentioned, I think the question should not be whether or not to use the tools becoming available to us as technology advances, but how we should use them. Still, even that question is one I don't believe has a single right answer. Each individual must find their own answer by taking into account their unique set of circumstances.
I, too, find this idea a bit frightening. I worry that we become too excited with each new scientific advance, caught up in what we can plan and determine, but failing to see exactly how that fits in to the bigger picture. If we were to change who we chose as partners, what else would be altered, besides the prevalence of genetic conditions?
I worry that a great deal of beauty will be lost if humans begin to plan everything to a T. I am not a religious person either, but I do believe that nature spontaneously produces things that are far more beautiful (and well-suited to their place and time) than the human mind can dream up. Simply considering human milk, and how superior it is, in so many ways, to anything man-made, and how much we still lack in terms of our understanding of the many things that make it up, reminds me that we're far from having it all figured out, and trusting in nature is still our best bet much of the time.
I do not carry any genetic disorders that I know of, and neither does my husband that I know of.
But we don't know. We have two children, who are (or at least appear to be) perfectly healthy. Personally, I would like to have a third, but my husband isn't so sure. But let's assume, for the same of argument, we decide to.
If we did have another child, I would be over 35 and I would therefore be eligible for genetic screening through amniocentesis. I think I would avail myself of that option, if only because I am a planner by nature and I like to know. If I were carrying a child with down syndrome, for example, I would want to have a chance to prepare. But I would still welcome that child.
But I wouldn't consider getting testing pre-conception. I suppose to me it feels like there's a difference between wanting to know something to prepare, and wanting to know something to select. I'm not really comfortable with the idea of selecting my children, and I realize that it's not really possible anyway.
But again, I am saying this as a person who does not have any reason (that I know of) to seek testing. I suspect I may feel differently if I had a child who was suffering with a genetic disorder.
Sounds a little too much like Gallactica for me. I think the only reason I would participate in it is if my partner or I were already known genetic carriers prior to thinking about conceiving. I wouldn't test just for the sake of testing. I would also have to consider how the disease or condition affects quality of life.
I think part of the issue here (which was discussed on the NPR piece on genetic testing) is that the science outstrips the structure for dealing with the science, if that makes sense. Physicians offer genetic testing, but often don't know anything about what the results mean, and therefore have trouble helping people make sense of the results. Scientists do things because they can; the knowledge itself is the goal. Then we as a society have to figure out what to do with it. I'm hoping we all vote "no" on human cloning, for example. But this is one of those situations where it seems like personal preference is paramount. I can't imagine getting genetically testing for any number of diseases, but I know people who have and the intense stress that results from a "positive" result. But I also know that someone's life may have been saved from such tests. So I understand why people do it, for themselves and for their children. It's true that people could make decisions on whom to marry based on such tests, but I have to say I doubt it, at least in the near future. We know fertility is a problem, for example, but people don't force each other to have fertility tests before marriage, even people who really, really want to have children. (I'm definitely in the "I'd keep my husband" camp - we really wanted children and a family, but I'd have married him even if he couldn't give me biological children, for whatever reason.)
I also had a baby post-35, and also declined to have the 13 week nuchal fold test because I knew I would not have an amnio and would not terminate for Down's. But I also wouldn't impose my view of genetic tests on other people. I can see why people would want the information, might choose not to have (biological) children based on the results, or would terminate a pregnancy based on certain results. Some people feel like the more information the better. I think if there is even one situation like @Julie's where a couple could have more children without facing the agony of watching their child suffer and die, then it's technology that can work to the good.
I think that is one more argument for the government to get out of the business of marriage altogether. Allow religious people to "marry" through a religious (but not legally binding) ceremony and allow people (religious and not) to enter into legal contracts relating to their partnership that would be handled through the courts. But having the government continue to dictate who can and cannot marry and what rights that does or does not give someone has outlived its usefulness (if it every had one).
My husband's sister has an autosomal-dominant genetic condition. It is one that presents in a vast spectrum of ways with highly variable severity. We thought long and hard about having kids, especially since we were already 37 when we got married. Ultimately, we had my husband evaluated to confirm he did not also have the condition before starting to try to get pregnant. We never discussed adoption but I think we would have gone that route if there had been a 50% chance of our child being affected.
Because of age (I was 39 and 41 when I gave birth), we had CVS testing with each pregnancy. We decided we wanted as much information as possible, as early as possible. We didn't play a lot of "what if..." but we wanted the chance to make a decision if it was to come to that.
Julie:
There are certain conditions that are going to be debilitating or lethal in 100% of cases. There are others where there is, for example, a 50/50 chance or a 60/40 chance of it being debilitating/lethal. I think those are the scenarios where having more information doesn't necessarily lead to an obvious conclusion and may in fact make the decision about whether or not to have a biological child more gut wrenching than it needs to be.
I think Amy brings up a good point. Is choosing to have or not have a child based on genetic conditions really so different from choosing to have or not have a child based on eye color or sex or birth color? You are still ultimately selecting the characteristics or circumstances you feel are appropriate. And long-term those choices could have the same result. If individuals consistently attempted to manipulate whether or not they have a child with a genetic condition, they may make the conditions less frequent and they may also lead to discrimination against individuals who do have those conditions or against individuals who decide to bring a child with a genetic condition into the world. On the flip side, if individuals consistently attempted to manipulate whether or not they have a homosexual child, they may make homosexuality less frequent and they may also lead to discrimination against individuals who are homosexual or against individuals who decide that they don't give a shit whether or not their kid is homosexual.
The thing is, though, that as a whole I disagree with the practice. I think that reproductive manipulation is a bad idea. I don't mind other people determining what they feel are acceptable conditions under which to bring a child into the world, and I don't mind people governing their bodies, but at the same time I very strongly feel that any time we interfere with reproductive variety we will inevitably introduce further discrimination. We have enough discrimination in our world - we don't need any more!
I guess to me testing prior to marriage would be like conditioning your marriage on your loved one's fertility because basically it's saying that if they aren't someone optimal for you to have children with, you don't care if you're madly in love etc, you're going to kick them to the curb. I think it dehumanizes people to basically treat them like showdogs to be bred for certain traits. (If we want to take this thing to the logical extreme.)
That being said, I do think it'd be valid for a couple, after getting married, to undergo such testing and take it into consideration when deciding when and whether it'd be prudent to have children. As a Catholic though I am absolutely against abortion and that includes for children who have genetic disorders. Their "imperfection" by our human standards doesn't change their value in the eyes of God, or give us a right to deny them life. While I think genetic testing can be a factor in deciding whether to have children in the first place, I think its only moral use once a pregnancy occurs is for the parents to be informed and therefore better able to care for their special needs child.
I know many commenters don't share my religious beliefs and that accordingly their views may be different, but that's where I stand and why!
I didn't get any prenatal testing for possible disorders when I was pregnant with my son, so I doubt I would get the one mentioned in the article. I think there will always be people that wouldn't want to know, that would choose to have their children just the way they are, even when they are hypothetical and not yet conceived, just like now there are people who choose to have their children even knowing that the child will have a disability...
Unfortunately the above mentioned article doesnt mention how accurate the test is. With most prenatal testing there is room for error, and this one might be no exception, especially since it tests for multiple things.
P.S. lurking for a long time, leaving my first comment, thank you for your blog
Okay, so I've been thinking about Amber's comment because something she said really clicked for me. When I was pregnant, we opted out of genetic screening. We knew that because my pregnancy was a high-risk pregnancy and I was working with a team of doctors who all deal exclusively with high-risk pregnancies and would be delivering in a hospital that works extensively with high-risk pregnancies...any problems we ran into could be handled. Still, our doctor asked if we'd like to reconsider. "Let's say you have a baby born with Down syndrome," the doctor said. "Down syndrome children have higher cardiac risks from birth. We have pediatric cardiologists on staff, but there are times when there is not a pediatric cardiologist in the hospital. If you gave birth to a child who could have or was at higher risk of having significant heart problems, you might want to know so that as soon as you call in your labor and head to the hospital, we can contact one of the pediatric cardiologists and ensure that they are there when you deliver. Sometimes a twenty-minute wait is too long."
We still opted out. But this does remind me of that. Maybe the technology would be a good idea for some genetic conditions that can still cause minor health complications from birth. You test, you find out that you're at higher risk, you conceive and now they know exactly what to look for during your pregnancy or what to prepare for during your delivery.
It still comes back to how the technology is used, I suppose, more than whether or not it exists.
Hi there, I've read your blog for quite a while but never commented. Your posts are always so interesting. This one in particular. I've just finished reading "Becoming Human" by Jean Vanier. Very moving. All lives are valuable and need to be seen as worthwhile and unique regardless of what shortcomings society perceives. I think this kind of testing puts different values on different lives. This is not what I want to see in the world.
Thanks for the excellent post.
I agree Annie! I wish the government would just get out.
I suppose to me it feels like there’s a difference between wanting to know something to prepare, and wanting to know something to select. I’m not really comfortable with the idea of selecting my children, and I realize that it’s not really possible anyway.
I think that's about as well-stated as it's going to get; I kept trying to form my opinion here, and couldn't get it more eloquently.
That said, I'm also a panicker; I would've gotten every test available in my pregnancy, if my OB had not calmly explained that most of them were unnecessary.
Annie, but even with the debilitating/lethal/incompatible with life conditions (say acranium anencephaly), getting the test also only informs the parents about the 'probability' of having a kid with the condition.
I think you were being facetious with your "how many dates" question, but this article actually gives an answer, at least within some Orthodox Jewish circles:
"In the context of shidduchim (=arranged dates with marriage as a goal), the "carriership check" is often run within the first three dates, to avoid disappointments and heartbreak. Ideally, it should be checked prior to the first date, as there are no charges applied to any particular query. Couples generally wait until the third through fifth date because of the perception that participants go on too many first dates to make a pre-first date query viable and asking for a check after a first date indicates that the requester is over enthusiastic about the match."
Here's the whole article:
http://en.wikipedia.org/wiki/Dor_Yeshorim
Channa:
I wasn't being entirely facetious. I do think that if this is something that is important to people that they may wish to get tested earlier rather than later. Perhaps not when people are dating as teenagers or very young adults, but as soon as they start to feel like they are looking for a "life mate", then I think someone who would do the testing at some point, might as well do it sooner rather than later to avoid "heartbreak and disappointment". Obviously if both parties agree that they are not set on the idea of having a biological child and that they would be more than willing to pursue another route if the testing showed a potential risk, then perhaps the tests aren't needed that early in the relationship and they could wait and see.
katadia:
Yes, I realize that.
Nodding in agreement with @Upstatemama. Before becoming pregnant with my first son, his father was tested for the Tay Sachs gene (both of us would have had to have the gene to have a child with Tay Sachs). He isn't Jewish but we learned Italians are also at high risk. Had he tested positive, our child bearing plans would have changed. Tay Sachs testing is routine among Jews in the U.S. prior to conceiving. If having children from your own genetic material is important to you, I imagine being tested prior to something like marriage (we weren't married) is sensible.
File me with those who see the primary risk of this as privacy (akin to the government interference argument). As long as this information stays with the person to whom it belongs, I don't see any problem with knowing it and making decisions based on it. I had all the genetic testing available at the time (or of which I was aware) both before I got pregnant and when I was pregnant. Had the genetic testing I had when I was pregnant shown one of a number of genetic "disorders" (my partner and I decided this beforehand), I would have aborted. I fully support those who chose to have children with certan genetic "abnormalities" (these words are problematic) but my choice would have been otherwise.
Being given more tools to decide whether or not you want to create a potential life which may have a disease or disorder isn't devaluing life.
Empowering information values the lives which are already here: parents' who have to make the serious, important, life altering decision about what they are willing or able to take on in their already existing lives before they bring another life earthside (a life that unfortunately and all too frequently could become unwanted - just look at the adoption & foster care pages online - when parents realize they can't afford or otherwise handle the care of a disabled child after the child is born).
There's nothing wrong with a person deciding they don't want the responsibility of a child with a disability. It's the same as every person's right to decide they don't want any children or they want 8 children or they want to adopt.
I see tools that may help people better able to make those decisions before children are born as a benefit.
I have written about how Orthodox Jews, many of whom have arranged marriages, handle this here: http://www.amotherinisrael.com/genetic-testing-marriage/
[...] about the procedure and technology at Care2. I have mixed feelings about it, just as I did with the expanded prenatal genetic testing that I wrote about in [...]
Annie, I do like that idea and that used to be my view, however, a problem with it has been pointed out to me. In our cis/hetero-normative, homophobic society, people (including people with institutional obligations) will privilege cohabitating opposite-sex couples like they are married, whether they have the paper or not. Other types of couples sometimes need that piece of paper to back them up when their status is not respected because they lack straight privilege.
I agree that selecting against some genetic disorders *feels* different from selecting against other traits, but I can't quite make a coherent rationalisation. (I'm not being rhetorical when I ask:) Isn't selecting against genetic disorders ableist? Why would selection rooted in ableism be any different/better than selection based on sexism, hetero/cis-sexism, racism/colourism, or any other mode of oppression?