Should ALL patients have the right to conceive using modern medical technology?
Case: Mr. T is a 30-year-old man who has cystic fibrosis (CF) and cannot conceive naturally because he lacks both vas deferens due to his disease (97% of men who have CF are infertile). Mr. T and his wife, Mrs. T, desperately want children. To complicate matters, Mrs. T also carries the CFTR gene, although she does not have the disease. Their children would therefore have a high likelihood of being born with CF. The T's are seeking advice from their physician about pursuing in vitro fertilization so that Mrs. T may carry their child.
Background: CF is a progressive and life-shortening, autosomal recessive disease for which there is no cure. However, there are treatments that can prolong the patient’s life and relieve suffering. CF affects the whole body, but difficulty breathing is the most serious symptom. Currently, the life expectancy for someone with CF is in the forties.
Questions: Should Mr. T’s physician recommend against in vitro fertilization due to the high risk that the child would be born with this debilitating and fatal disease? Due to the high mortality rate associated with the disease, the Social Security Administration tends to award disability benefits to children with CF. Therefore, does the government have the right to regulate in vitro fertilization clinics and not allow such high risk couples to pursue the procedure? What other ethical issues are at work in this case?
Ah, no. All patients should NOT have the right to conceive using modern technology. Just because the technology is available does not mean that we should use it indiscriminately (myriad science fiction movies and books come to mind...1984, Brave New World, even 2001 A Space Odyssey, etc).
ReplyDeleteOf course I would never deny a person capable of reproduction the right to reproduce, no matter what genes he carried, but Mr. T is actually incapable of reproducing on his own because of some very undesirable genes. Quite frankly, that's the natural order of things- maybe, if you can't reproduce on your own, your body is telling you to adopt. Natural selection is beating him over the head with a sledgehammer and he wants to take tylenol. In cold, scientific terms, Mr. T simply is not "fit" and should not undertake heroic measures to transmit those genes. It is unethical (and immoral) to attempt to do so, and would be unethical of any physician to help him achieve this goal.
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ReplyDeleteGattica?
ReplyDeleteA few things to think about:
ReplyDelete1. Mrs. T does, in fact, have the ability to conceive without the assistance of modern technology. Mr. T, while lacking a conduit to supply to the external genitalia, does carry viable sperm. Is it right to deny one person the ability to have a child because the other cannot conceive? Are we going to deny a child with hip dysplasia the ability to function as a normal adult because he or she is simply unable to fix themselves?
2. By denying (or at least strongly suggesting against) these people the ability to conceive, how much different are we from the likes of Adolf Hitler? Hitler wanted a race of strong, healthy, Aryans. His attempt to ensure the success of this feat was to eliminate people, and thus the genes they carried, from the gene pool. Aren't we acting in a similar fashion?
3. Many people are CFTR carriers without knowing so. Since it's recessive, it has the ability to skip generations thus people may not recognize a family history of the disorder. That being said, two unknowing CFTR-carrier parents, (do your Punnett Squares) convey a possible 25% chance of an affected child. In this exact case, the T's chances of birthing an affected child are 50%. While that percentage is indeed greater than normal, at what level do we arbitrarily decide something is considered "high risk?"
4. In vitro fertilization involves external fertilization of an egg and attempting implant of a successfully fertilized egg. It is possible (and not just theoretically) therefore, to test the embryo for CFTR mutation prior to implanting. Given that, this situation and all its intricacies can be reduced simply to the question, "is the destruction of viable embryos ethical?" .... and that's a whole other topic that I am not going to touch on here.
For those concerned with the money issue: Perhaps the government should eliminate coverage for those families who chose to conceive knowing there was the possibility of producing a child with cystic fibrosis (how about THAT for a death panel?) However, how do we provide evidence that a family knowingly/intentionally conceived?
In conclusion, no doctor has the right to suggest in favor of, or against children, for a couple. The doctor, being a professional, should provide the unbiased the pros and cons of each decision and allow the couple to make a decision of their own volition.
Hitler? Really? That's a spurious comparison.
ReplyDeleteLet's not forget that what Hitler practiced was active elimination of people he deemed inferior and active encouragement of the creation of a master race through his Lebensborn program of coercive breeding.
Now compare this to the situation with Mr. T: Mr. T CANNOT conceive with his wife on his own without medical intervention. Why can't he conceive? Because of a deadly genetic disease. The issue is not whether his right to reproduce (or indeed that of others with genetic diseases) should be curbed or legislated against, but whether aggressive medical intervention to produce conception is justified. This is in NO WAY analogous to eugenics; in fact it is just the opposite. Eugenics involves active intervention, just as any attempt to allow Mr. T to conceive would. One could argue that it is a kind of reverse eugenics--stubbornly and deliberately maintaining CF in the gene pool even when, in this admittedly contrived situation, the party carrying the gene is unable to pass it on without assistance. Your point seems to be that not undertaking heroic medical efforts to produce conception in anyone who would like to have children is practicing eugenics. I just cannot accept that.
In conclusion, to quote John Stewart: "Only HItler is Hitler."
The definition of eugenics as per Merriam-Webster- "a science that deals with the improvement (as by control of human mating) of hereditary qualities of a race or breed."
ReplyDeleteEugenics doesn't necessarily require genocide, but is the active strengthening of the gene pool through selection of certain, "superior" (read: not CFTR deficient) genes. While Mr. and Mrs. T are not being selectively eliminated, through denying them the ability to reproduce, the genes they carry are. How is it that this doesn't fit criteria for eugenics?
In claiming that it's an active intervention, how is recommending against not considered active? If the technology is available and the T's are willing, it seems to me that recommending against fertility treatment is the active intervention.
In referencing your initial comment, "in cold, scientific terms, Mr. T simply is not 'fit' and should not undertake heroic measures to transmit those genes"- if this is indeed the case, why should we even use "heroic measures" that will allow Mr. T to live to childbearing age and thus have the possibility (remember, three percent are still fertile) to reproduce and subsequently pass on his deficient genes? Doesn't it seem that measures taken to keep a CF patient alive to the age of 30 are more "heroic" than in vitro fertilization?
You are of course correct that eugenics does not necessarily imply genocide. The definition you cite does indicate, however, that eugenics is a population-level, centralized intervention with the goal of affecting the genetic makeup of the human population—“a science that deals with the improvement (as by control of human mating) of hereditary qualities of a race or breed." This would manifest as laws against reproduction or forced sterilization in people deemed "inferior." Webster's also says that eugenics is "the movement devoted to improving the human species through the control of hereditary factors in mating". The American Heritage Dictionary says that it is "the study of hereditary improvement of the human race by controlled selective breeding."
ReplyDeleteRegardless, Mr. T is already sterile. He is not being forcibly sterilized. Furthermore, a doctor recommending that he consider not getting in vitro fertilization because of the likelihood that he will create a child with his deadly genetic disease is not equivalent to genetic engineering (note that in vitro fertilization IS a form of genetic engineering), nor does it constitute active prevention of the man from achieving his goal. Mr. T and his wife are seeking advice from a physician. It is entirely appropriate for said physician to advise against it and explain reasons why.
As to your point: "why should we even use "heroic measures" that will allow Mr. T to live to childbearing age and thus have the possibility (remember, three percent are still fertile) to reproduce and subsequently pass on his deficient genes? Doesn't it seem that measures taken to keep a CF patient alive to the age of 30 are more "heroic" than in vitro fertilization?" That is a straw man argument. As you know, this is not a discussion of whether to keep people with serious genetic diseases alive. Of course we should make every effort to ensure a good quality and long life for Mr. T. The question under consideration is whether to intervene to help him in creating more human beings with the same problem. This is most emphatically not a referendum on the value of Mr. T's life or on whether he has a right to live. Sure, 3% of people with CF are fertile. However, the prompt clearly states that Mr. T is not fertile and cannot reproduce on his own, so the question before us is how best to handle his desire to achieve vitro fertilization with his wife, also a known carrier.
Many people who know they have Huntington’s disease choose not to reproduce (are not coerced or legislated against) because they don’t want their children to endure what they know they will. Most parents want the best for their children. Do you consider this eugenics?
In short: I believe that the physician must try to convince the T’s that they should not attempt in vitro fertilization. The chances are very high that any child produced by the couple described in the prompt will have this deadly disease, which results in a lifetime of severe health problems and suffering. It would be irresponsible for a medical professional not to explain this likelihood. (As you pointed out before, we could make multiple embryos and eliminate the ones that have CF. The ethical issues inherent in that is a whole other can of worms that I do not wish to open here...)
New rule. Bringing up Hitler means minus 2 points. Never bring up Hitler. It means you have been either (1) watching too much History Channel or (2) you got lost and think this is high school debate class. News flash: we're not talking about World War II, so bringing up Hitler is a stinking loser. I can smell your argument from here.
ReplyDeleteWhy not be creative next time and compare your opponent to someone evil that nobody has ever heard of? Maybe they remind you of Pol Pot? What about Richard Nixon? Or you could try Javaar from Disney's Aladin. =)
Point is, it's silly, stupid, and weird to compare everything to the Holocaust. You are Hitler. You killed this debate.
Ms Marple: A few more things to consider:
ReplyDelete1. CF is not always as debilitating as it may seem. Like many other diseases, being homozygous recessive doesn't necessarily mean that you will have the worst case of CF people have seen. There is a range, and given that range, a bell curve distribution allows some people to have minor symptomology.
2. As per the experiences of a close friend who is, in fact, a genetics counselor, many people with Huntington's Disease do proceed to have pre-implantation genetic diagnosis.
3. While a discussion with a doctor does not involve informed consent, the aura of that philosophy should still remain. We do not have the right to make a decision for anyone. As a physician, you need to provide an unbiased viewpoint. This is the basis of my entire debate.
At any rate, I appreciate your debate. It has been wonderful to be forced to research some of the issues you've raised. Feel free to reply, I will be sure to read, but this will be my last post for this issue.
MRJ: The history of modern genetics counseling first started with eugenics- a philosophy which was popular among the Nazis. Given this, relating the topic to Hitler is VERY relavent. If you haven't yet been informed, this is a venue for academic discussion on a subject, and personal attacks are not appropriate. Unless you have something relavant to add, please do not post at all.
One final thought from me....I think you may be using the definition of "unbiased" rather broadly. As physicians, we will be paid to use our best clinical judgement, and any judgment we make will be colored both by what we know--scientific facts we have learned in school, statistics and probabilities (with varying degrees of validity)-- and our own opinions based on our personal beliefs and anecdotal experiences. I think there is a profound difference between explaining to a patient the reasons why a course of action may not be the best choice (to the best of our knowledge) and making the decision for the patient. We cannot become our patients' "yes men".
ReplyDeleteAnonymous, I have enjoyed our debate and look forward to sparring with you in the future! :)
respectfully,
MM
Valid point, Anonymous. I think we probably should not have published MRJ's comment as it does not contribute to the discussion in a constructive manner. Thank you for posting.
ReplyDeletePoint 1: Should we recommend against IVF
ReplyDeleteI feel that the relatively known probability of the child being a carrier or being affected by CF is something that we should discuss with the patient. Of course, there is also the posibility of harvesting Mr. T's semen, Mrs. T's eggs, and combining them into screenable embryos and only implanting the ones that successfully come away from screening as heterogenous for the CF gene (or, having a homozygous CF child if none of the embryos are better). However, as a physcian I don't beleive that we can select for negative traits (ex: blindness in children) when the option to avoid that disability exists (if I'm not mistaken, there are court cases about that very matter in the works right now).
Therefore, my initial response to Point 1 is to inform the patient of the risks involved, suggest adoption as a reasonable (but rejectable) alternative, and also inform the couple of the advances in techonology that would allow them to have a child.
To some people, having a child may be the pinnacle of their existence. While I recognize that someone horribly unfit to rear a child may constitute a threat on behalf of the child, I don't believe that the US government has the power to deny people the ability to have children (not since the days of American Eugenics in the 60s)--they must declare them unfit and take the child afterwards, I believe.
Point 2: Does the government have the right to regulate IVF clinics and prevent the use of such technologies in instances of 'high risk' births?
Technically, the government can do whatever it wants so long as a law is written that does not conflict with the Constitution (or an amended Constitution) and due process is followed. So, 'yes,' the government could do that if the conditions were right.
However, I suspect that the United States government would have a difficult time passing that law in the absence of proving abuse to the assumed-born child (unless it was merely denying the patients money as individuals using an insurance plan or government benefits) without potentially violating individual privacy (perhaps reflected somewhat in Griswold v. Connecticut, 1965?).
As stated above, I'm guessing that a protracted legal battle would ensue and would require federal laws to be passed and/or Supreme Court cases to set precedent (I apologize if one has and I've missed it).
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ReplyDeletePoint 3: What other ethics are involved in this case?
First, to say that someone has a right is to suppose that someone has a duty to either (A) provide them with a specific treatment or (B) refrain from taking specific actions against them.
In this case, I would say that anyone has the right to have children insofar as they are able to find someone to consent; we have the duty not to interfere with someone who is capable of having a child on their own (without breaking laws and whatnot).
However, do we have a duty to supply couples with children when they are otherwise incapable? I don't feel that I have that duty per se, but (as a physician) I would have the duty to accurately inform a patient about the risks and the actions that could be taken to overcome the obstacles that limit them due to their disease or illness. As such, it would be my duty to inform the patient on how they could possibly get around it.
Make no mistake--that does not mean that I should have to pay for it (and, as a physician, you could probably get away with sending them to another doctor and not performing the procedure on grounds of consciencous objection in a non-emergent situation).
Should the government pay for it? As it is elective, I would think that they wouldn't and, perhaps, that they shouldn't. Still, I imagine that there could be specific programs and private benefactors and non-profit groups that could aid these individuals. However, I think insurance companies should no more discriminate against this than other couples who utilize IVF on the assumption that they, too, are incapable of proper contraception (or not considering it at all).
In the end, if people save their money to have a child via IVF (diseased or no), who am I to say that such a decision should be stopped, but condone the purchase of a house, sports car, OR philanthropic contribution? In my mind, they have played the game of life (American House rules) and beaten the system and EARNED a kid, regardless of that child's disposition.
Lastly, it is important to remember that even disadvantageous genes may come to serve a purpose in humananity's evolution--Sickle Cell shows how it confers benefits to those who are heterozygous. It is possible that CF may one day confer some advantage (though unlikely). I believe it has been further stated that each person walks around with about 6 fatal mutations in their genes, but does not die because we have two of each autosomal chromosome; some unlucky citizen earns out ire for losing the genetic lottery? In all probability, we have similar fatal flaws--they just line up in a fashion that doesn't burden us.
In conclusion, I feel that such individuals are certainly granted access to the technology and should be made aware of its existence and how to get to it. However, the ability to ultimately achieve that end may rest with them (i.e. society does not have a positive duty to provide them with children no matter the hurdle, no questions asked).
I would hope that the physician would counsel the couple appropriately and make it clear what the risks are for a child with Cystic Fibrosis.
ReplyDeleteThat being said, the couple have as much right to reproductive services as anyone else. Unless we (as a unified society) decide to put into law active discrimination against certain populations, there's nothing we can/should do to stop the CF couple from using services that others are given without question. And if those laws did come into action, they too would be subject to a thorough examination of ethics regarding individual rights and genetic discrimination.
As far as the "reproductive evolutionary fitness" argument is concerned, I think we can all agree that in a society where <1% of all people actively hunt/farm their own food, or build their own houses, or live without TVs/fridges/ipods/etc, we can straight-up dismiss the idea that our reproductive and evolutionary success is driven strictly by "natural" factors.