A couple of weeks ago I pointed to an article by bioethicist Jacob Appel arguing that genetic screening for severe disease mutations should be mandatory for parents undergoing IVF, and that not doing so is tantamount to child abuse.
Today the same theme is taken up by New Scientist biology editor Michael Le Page, but extending the process to all parents-to-be via carrier testing:
All would-be parents should be offered screening to alert them to any
genetic disorders they risk passing on to their children. Those at risk
should then be offered IVF with pre-implantation genetic diagnosis
(IVF-PGD) to ensure any children are healthy.
This is a perfectly technically feasible approach. Over the last few decades geneticists have uncovered the genetic basis for hundreds of severe inherited diseases; with modern genotyping technology it would be possible to design an assay testing for all known disease mutations in a single scan (indeed, this appears to be the goal of recently uncloaked genetic testing company Counsyl). Couples who both carry known disease-causing mutations in the same gene could then be offered IVF, with pre-natal genetic screening of embryos to identify those that would suffer from the disease.
Such screening wouldn't prevent all genetic disease (it would miss disease due to very rare or unknown mutations, or due to de novo mutations occurring in the child), but it would certainly have a dramatic impact on the number of children born with horrible diseases such as cystic fibrosis and Duchenne muscular dystrophy.
Le Page argues that the failure to offer such screening as routine is ethically equivalent to allowing children to die of treatable conditions such as diabetes, infection or malnutrition - reports of which are regarded with widespread horror by Western society:
Most people are rightly appalled by such cases. How can parents
stand by and let their children die instead of doing all in their power
to get the best medical care available?Yet
this is precisely what society is doing. We now have the ability to
ensure that children are born free of any one of hundreds of serious
genetic disorders, from cystic fibrosis to early-onset cancers. But
children continue to be born with these diseases.
The argument is straightforward: allowing a child to be born with a disease that will result in a lifetime of suffering and premature death, when a simple screening test could prevent it, is completely morally equivalent to allowing a child to die of infection when effective antibiotics are freely available.
Interestingly, the individual technologies involved in such screening are relatively uncontroversial in mainstream Western society: few people object to carrier testing, IVF is widely accepted, and even pre-natal genetic diagnosis of severe diseases (as opposed to cosmetic traits) appears to be morally unobjectionable to the majority of people. Le Page is not even arguing that the process should be mandatory (unlike Appel), but simply that it should be offered as routine to all potential parents - although he doesn't state whether or not he believes that the screening should be paid for by the government.
Naturally there are objections to embryo screening among religious conservatives who believe that inflicting severe disease on children is the will of God - but why does the prospect raise such unease among even the secular community? I share Le Page's puzzlement on this question, and would invite opponents to lay out any well-reasoned arguments against routine screening in the comments below.
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I think the non-religious moral argument is more on the "slippery slope" idea: that we need to carefully limit what choice parents have over embryos, because it's just a step away from choosing based on sex, hair color, physical build, etc... then using genetic modification to bring about the changes we want, and we're straight on into eugenics. And of course only the rich people will be able to afford all of the fancy improvements, so rich kids will all be super-intelligent and beautiful, while poor kids will be stupid, fat and ugly. And (on down the slippery slope) we head into the Brave New World.
I personally think this (like many, many slippery slope arguments...) is full of crap. It's not like we lose all moral sense once we take the first step -- we'll just continue to evaluate each option as it becomes available, and lay down the law at some point.
Rob-
I think that the slippery slope argument you mentioned misunderstands the concept of shifting morality in the field of bioethics. As with evolution, where we state that individuals do not evolve, but only populations, and not within one generation but over many generations, invoking a slippery slope argument does not suggest that one step will make everyone lose all their moral sense. Individuals do not lose moral sense; populations do. It is not lost in the span of one generation; it requires many generations, each taking a step or two further, until the morality of the population has shifted. That is the danger: our children do not have the moral foundations on which we grew up, they have those we developed after we were grown. The same will be true of their children. Working to have the foresight to prevent this change in morality from occurring is what I see as the primary use of invoking a slippery slope argument.
On topic, I think that secular society is queasy about the idea of these screens because it requires us to make individual moral judgments about what qualifies as a worthwhile quality of life. If you define "quality life" as "life free of [insert screenable genetic disease]", then you have a definition of quality life that many people would disagree with from their own personal experience. If, on the other hand, you describe it as "life full of good, encouraging relationships and enjoyable experiences", then certainly there are many disabled people, for example many with higher functioning diseases such as Down's, that live with an incredibly high quality of life. Each person's definition of quality will be different, and so to invoke my definition on you makes us feel the unease that comes with limiting individual freedom.
Certainly no one would argue that a life with a disabling genetic disease is without perhaps more than its fair share of difficulty, but would any of us without such a disease argue that, because of our health, our lives have been free of difficulty? Of course not. We all face different hardships in life that cannot always be compared to the hardships faced by others. However, arguing in favor of such genetic screens requires us to make the argument that we can compare them, and that we can determine objectively what qualifies as a "good" or "quality" life versus one that is not worthwhile.
Suppose that the SNPs for Depression, ALS, Schizophrenia, Alcoholism, and Homosexuality are indentified and among others are offered for testing to parents. Many people in different societies consider some or all of these to be bad. Think of the people that we would have quite possibly been deprived of had this testing been available for the last 200 years. Stephen Hawking suffers from ALS, the most debilitating disease on this list; he is one I would not want to have never existed.
Widespread genetic screening of would-be parents and their would-be children would only be ethically feasible if the government were able to foot the bill. Without equal access to these options, the gap between the rich and the poor would become even greater and we could over time end up with a genetic gap between classes.
Andres,
If a genetic disease is uncorrelated with scientific achievement, then selecting against it won't affect average scientific achievement: some of the embryos selected for lack of genetic disease will also achieve on a Hawking level.
Also, doesn't your argument implicitly favor embryo selection to increase the odds of a child turning out like Hawking?
The government has been footing the bill for mandatory post-natal screening of infants for decades, for such treatable diseases as hypothyroidism and phenylketonuria.
A child born severely disabled drains both the healthcare system and the parents' (or government's) pocketbook. It wouldn't be hard to find a favorable cost/benefit analysis for this type of testing.
I am fairly extreme on this topic. I would have aborted any child with an abnormality that we could find. (I have four healthy children--I got lucky). Raising a child is hard enough. Childhood is hard enough. Ethically, morally, and financially, we have an obligation to use every piece of information at our disposal to protect our children. Even before they are born.
To Mr Shulamn:
No, it does not.
That fact is that we cannot predict who will be a Hawkins type genius and who will not based solely on genetic information. I am certainly not saying that there is a correlation between scientific achievement and genetic defect. What I am saying is that you cannot positively predict when someone with a genetic defect will be a genius or not be a genius.
The mechanism that leads to high achievement in any field is multi faceted and is not based completely on a genetic predisposition to intelligence.
A correlation between artistic achievement and depression has been postulated and the prima fasciae evidence would seem to indicate that it is so but this is an area that awaits definitive study.
My point is simply this â absent a genetic defect that always leads to a catastrophic diminution of cognitive skills, you cannot predict the intellectual or artistic achievement of anyone based solely on genetics at this point in time.
The argument in favor of routine screening assumes no risk of the procedure, no false positives, and no financial cost. I am not willing to accept that monetary costs are insignificant, considering that the total incidence of genetic disorders likely to be blocked by such a test is less than 1/500.
I'm assuming that we aren't going to screen for common late-life things; I suppose you could take in many more by screening for polycystic kidney disease or otosclerosis, but at some point this becomes ridiculous.
I don't believe we know enough yet to quantify the additional risk of non-implantation after the test. The total risk of non-implantation during IVF is already high. If the additional risk is as high as one percent, that means that five pregnancies are prevented for every single case of a genetic disorder prevented. The argument does not consider the suffering of those childless couples, or the cost of additional IVF rounds.
The argument also ignores the suffering of people who face the opprobrium of society for their choice not to have the test performed. At present, this is considered to be bad luck. The change toward an attitude of parental negligence has already begun for parents who choose to complete Down syndrome pregnancies.
Risk cannot be reduced without some action, and all actions have costs. It is easy to say that one child's suffering justifies any cost, no matter how high. But we certainly don't have that attitude toward non-heritable birth defects, many of which are far more costly and painful.
It's hard for me to see a principled reason why we should think heritable conditions are "more preventable" when the only possibilities for prevention are (1) expensive IVF coupled with expensive screening, or (2) cheap prenatal genetic testing coupled with mandatory abortion.
A child born severely disabled drains both the healthcare system and the parents' (or government's) pocketbook. It wouldn't be hard to find a favorable cost/benefit analysis for this type of testing.
Let us suppose that the test is $1000, covering all the embryos in a single IVF round. That is a small addition to the cost of IVF. The fraction of children born with CF in the US is around 1/2500. That is an expense of $2.5 million per CF case prevented. The average annual cost of treatment of CF in children is on the order of $10,000 (depending on symptoms and genetics). A CF risk pool of only $100 per birth would be sufficient to cover the maintenance costs; the test is therefore a bad investment by a factor of 10.
That calculation does not attempt to quantify intangibles such as suffering, and we can consider that other, more rare genetic disorders might also be prevented by the screening. Still, 499 out of 500 couples would be better off putting the money in the bank.
If we want to consider a pure cost-benefit analysis, prenatal genetic testing will soon be a lot cheaper than pre-implantation screening. Coupled with abortion, it's already near cost-neutral for CF. I don't believe that we should implement a mandatory prenatal genetic testing policy, and I don't believe that we should encourage routine abortion for CF diagnoses.
Andres,
If you agree that we don't have to worry that disease screening will reduce the number of scientists at the level of Stephen Hawkings on net, why bring him up? It seems irrelevant.
John,
PGD also lets you test for chromosomal abnormalities, and thus actually improves the fraction of implanted embryos that come to term. If you're doing a CBA, look at this paper by Armand Leroi: http://www.ncbi.nlm.nih.gov/pubmed/17139290?dopt=AbstractPlus
CF is an excellent example for why mandatory screening shouldn't be done. Survival for CF patients now typically extends well into the 30s. Such individuals can often have productive and happy lives. So those who know CF individuals, as I do, or who have CF find this offensive. CF is a bad example. Now there are many awful diseases with early onset and low survival. These would be reasonably screened -- as some already are.
John,
I'm currently writing up a more detailed post responding to some of your points, but just a quick response to one point here:
It's hard for me to see a principled reason why we should think heritable conditions are "more preventable" when the only possibilities for prevention are (1) expensive IVF coupled with expensive screening, or (2) cheap prenatal genetic testing coupled with mandatory abortion.
What about relatively cheap carrier testing (via a chip targeting all known Mendelian mutations, or soon via capture-resequencing of all Mendelian disease genes), followed by subsidised IVF/PGD for those couples who are both homozygous for a recessive disease mutation at the same locus?
I have to agree with David, as I just had a conversation with a man whose daughter is hom delta F508 and so genetically has CF, but has no symptoms of the disease. I have carrier tested pregnant women who had no idea they had CF.
The problem with PGD isn't the cost to parents, it is the idea that parents are evil or irresponsible if they have children with a disease. I have heard endless accounts of parents who are already vilified because they did not screen or abort their children. (An insurance company recently told a woman they would not cover the health care cost of her CF child if she didn't abort.)
PGD is the wrong approach to disease. It is literally throwing the baby out with the bathwater. It assumes that treatments in the future won't improve, or that cures will never come. PGD doesn't cure disease it only gets rid of the people with the disease.
I suggest focusing on curing genetic disease instead of making sure the people with them never get born.
The whole argument presupposes that embryos are not human beings and that anyone who feels otherwise is arguing from religious principles. While the pro-life movement is dominated by religious types, there are secular arguments for extending human rights to conception, which, scientifically speaking, marks the beginning of each individual human being's life cycle. The most convincing secular argument being that human embryos are human beings, however nascent, and that our own subjective prejudices about what it means to be human should not override such an objective reality. If you accept this premise than the whole argument is moot. Embryos with genetic defects are still human beings, just as children with genetic defects are still human beings, and their parents have the same responsibility to care for them as they do to care for their other children.
Thinking about it from a personal POV, my daughter is 15 months old.
Though I had asked for earlier screening, my so-called "National Center for Excellence in Women's Health" dropped the ball and only gave me screening in my 6th month of pregnancy. Technically, you can abort in this state up until 24 weeks. Yet, there are babies who are born at 24 weeks or later who survive. What a terrible dilemma...
I had an amniocentesis that came back gloriously negative for anything....but it was a tough wait. I honestly am not sure what I would have done had it come back positive for a genetic illness like Down's Syndrome.
Also, my Mother-In-Law has a Very Rare genetic disease (Barter's Syndrome, AKA potassium wasting). I believe that she's lived longer than any other person with this illness. I asked that my child be tested at the amniocentesis, but they couldn't figure out how, and gave me stats saying it was an improbably low possibility.
As it stands, testing sucks. And I'm one of those nuts who believes in abortions - hell, I'm for mandatory contraception, mandatory abortions, and getting a permit to have kids.
Rebecca and Andres, your argument via examples of successful, valuable individuals with genetic diseases implies one of two things:
A - That the diseases themselves contribute positively to a person's wellbeing and success (Andres, you proceeded to explicitly deny this angle)
and / or :
B - Given less than ideal criteria to make a moral choice, deliberate randomization is superior to choice.
What reason, if any, would you give to support B? I suspect this falls back on the sort of intuitive moral double-standard isolated by the notorious Trolley Dilemma, wherein people view passive decisions as less culpable than active decisions.
While I absolutely agree that disease risk alone is aninadequate predictor of subjective quality of life, this observation does not refute Le Page's analogy. Since many malnourished children may grow up do be happy, productive adults, should parents flip a coin to decide whether to malnourish their children?
Spaulding, I hold that Le Page's analogy is flawed. Le Page says that not using PGD is the same as flipping a coin to see if you should starve your child. Here is the problem with the analogy, if a child is malnourished the "cure" is food. With PGD, if a child is diseased the "cure" is to toss them out and start over.
Le Page analogy also assumes that the parents have power over their genetic make-up and what embryos they can produce, as they would have power over the nourishment of their child. But we do not have power over our inherited genetic make-up. In PGD, diseased offspring are still created, they are just thrown in the trash. Parents should never be vilified for allowing genetic nature to take its course and accepting what nature gives them. Parents of diseased children should never be compared with people who would willingly starve their children.
I know I am commenting on an old post but I was so appalled by this thread I had to comment.
Mother - "I am fairly extreme on this topic. I would have aborted any child with an abnormality that we could find. (I have four healthy children--I got lucky). Raising a child is hard enough. Childhood is hard enough. Ethically, morally, and financially, we have an obligation to use every piece of information at our disposal to protect our children. Even before they are born."
As the mother of a child with hearing loss and a cleft lip and palate I have to say I pity your "luckiness". It is obvious that you have not needed to mature to the point that you can see a persons value even though they are not like everyone else. Even though they have to overcome things like pain, disability and social stigma. And NO, you don't get to say that something is ethical just because it is cheaper for the parents and the government.
It's interesting to see a bunch of "typical - healthy" people talking about whether having a child with a genetic disorder is abuse. Perhaps you should be asking the people with these disorders. "Would you rather you hadn't been born?" If ALL of those people say no then perhaps you have an argument.
To the people referring to Stephen Hawking. He says himself that he was a poor student before the onset of his disease. It was facing a terminal illness and the pressure to make something of himself before he died that made him apply himself.
No, I do not suggest that parents should be forced to bear a child that they feel unable to provide for, but to say that giving birth to a child who is genetically risky is abuse is manipulative and unethical.
As a person who works with disabled people I would like to say that having these children is a blessing and having them is not child abuse. I work with a girl who is in her twenties and even though she is nonverbal I can tell she is happy from the way she laughs and smiles. Her parents and the people who work with her love her so much. Also my mother was told to abort me when she was pregnant because I showed signs of having a genetic disorder. I was born perfectly normal and healthy and graduated at the top of my class. What a mistake it would have been to abort a healthy smart child just because they could have a disability.
These are the most disgusting comments and beliefs that I have ever read in my life. Eugentics is Eugentics period. If you want only perfection you damn well better be perfect yourself.Do you see perfectly, hows your hearing hmmn or intelligence.How many of you can run like Jesse Oewns, or write like Mary Shelly. Not a single damn one of you. The basic bottom life is you don't want to be BURDENED with the
care of a disabled child, you only want to spare yourself the HARDSHIPS
of parenting such children your MOTIVES are niether noble or wise, only cowardly and judgemental. If you believe no can read through your oh so
poltically correct words your are wrong.