“Grow Your Own Marrow Donor” Ethics and Consequentialism: The Ayala Family Saga

Anissa Ayala and her custom-made bone marrow donor

Once again, the fans of that ethically corrosive twin of  “the ends justifies the means,” consequentialism, were holding court in the mass media, as the “Today Show” revisited a two-decade old ethical outrage to declare that it was all perfectly fine after all…because it worked.

Thus does television, itself dominated by ethically-dim writers, producers and stars, corrupt the public. So here we go again:

Does the fact (if it indeed is a fact) that Osama bin Laden capture and execution was facilitated by torture make torture less ethically wrong?

No.

Do the fortuitous results of any action that was unethical from its inception change the nature of that conduct from unethical to ethical.

Again, no.

Is conceiving a child solely to provide donor bone marrow to her cancer-stricken older sister ethically acceptable as long as the sister’s cancer is cured?

Absolutely not!  But to listen to the “Today Show,” and revoltingly, the “Today Show’s” resident medical correspondent Dr. Nancy Snyderman, it is not only ethically acceptable but laudable. Because it worked.

Twenty years ago, Abe and Mary Ayala were desperate because Anissa, their 16-year-old daughter, had been diagnosed with leukemia. Chemotheraphy proved ineffective, and neither the Ayalas nor their son was a compatible bone marrow donor. The Ayalas had long before decided that two children were enough; Abe had a vasectomy. But then Mary came up with the idea of having another child in the hopes that it would be a bone marrow donor who could save Anissa’s life.

Remember, this was the only reason baby  Marissa was conceived, and the odds of the scheme working were long in every possible way. At 42, Mary Ayala had only a 40% chance of having a successful pregnancy. Abe had to get his vasectomy reversed, and that isn’t always successful. There was also less than a one in four chance the new baby would be a compatible donor. But when Mary was seven months pregnant,  doctors determined that her unborn baby was in fact a bone marrow match for her soon-to-be sister. Marissa was just 14 months old when doctors at the Hope National Medical Center in Duarte, Calif., extracted some of her marrow and gave it to Anissa.

It worked. Hooray. Anissa is about to graduate from college. She’s cancer free. Not only that, but publicity about the dying girl and how her parents custom-made a bone marrow donor has supposedly increased the number of registered donors nationwide.

The plan, and its execution, was still absolutely wrong.

A child was conceived not out of love, or because she was wanted for whom she would become, but for what benefits her cells would confer on another daughter. A human being was exploited and used to further the welfare of another. An infant was used as a medical donor without her consent. This is not merely the “ick factor,” our reflex revulsion at strange, new uses of science. This is conduct that violates core ethical principles about human dignity. Marissa was conceived as less than a child, as a private human bone marrow bank, owned and operated by her parents. She couldn’t refuse to donate her marrow, because she was too young. Follow the principle:

  • If it is ethical to create a child solely to save another, why not permit a child to be adopted for the same purpose?
  • How different is it to conceive a child to give not one but both kidneys to save a failing sibling?
  • How long before we accept the premise of “The Island,” with wealthy individuals paying for identical clones, kept in storage until a liver, a cornea, or heart is needed to replace part of the clone’s original?

If doctors had determined that Marissa wasn’t a match, would the Ayalas have aborted her and tried again? Why wouldn’t they? She could not serve the purpose she was manufactured for, so wouldn’t the prudent thing be to replace her as quickly as possible with a useful child? What if the unborn fetus had been able to communicate, perhaps via telepathy, that she would refuse to allow her marrow to be used? Would they abort her then, hoping for a matching and more pliable fetus?

Marissa told Meredith Viera that she wouldn’t be alive today had it not been for her sister’s need for a donor, so she’s happy about the outcome. Presumably former slaves, conceived for sale, were similarly glad to be alive. They could say, like Marissa, “Without slavery, I wouldn’t be here today!” That doesn’t extinguish the evil of slavery, however, and the fact that Marissa, who was raised knowing that she was a created not to be a child and a member of the family, but to be a means to an end, doesn’t wish she didn’t exist is not support for the unethical practice of baby farming for organ harvesting.

Ah, but ethical principles can be so easily discarded in the interest of sentiment! Dr. Snyderman said on the segment, “It crossed so many medical ethical lines. I remember thinking early on, I was very critical of this as a doctor. Then I thought, ‘Well, as a mother, would I do it?’ And then I thought, ‘Yes, I would.’ “
Then Dr. Snyderman does not believe in the medical ethics and bioethical principles she reports on. What else would she do “as a mother,” I wonder? Break the law to save her child? Lie? Rob? Maim? Torture? Kill? There is no “mother exception” to ethics. Mothers are not permitted an ethical and moral free pass to do anything at all in a child-related crisis…just so long as it works. Before they decided to conceive Alissa’s Designated Marrow Donor, whom they nick-named Marissa for short, an unrelated bone marrow donor had been found and then withdrew his consent. If she had found that she could not conceive at 42, would Mary have bought a Glock, and forced the donor at gunpoint to give up his marrow? Would Dr. Snyderman?

I guess it would all depend on whether it worked, according to the Today Show’s logic. If the donor then said, “hey, that wasn’t so bad…you know, I’m glad I could save a life!” and if Anissa survived, that would make the gunpoint procedure all right.

It would not, just as the fact that the sisters are happy and healthy doesn’t make the Ayalas’ massive violation of fairness, respect for autonomy, and human dignity conscionable. Creating a child to be an organ or bone marrow donor is absolutely unethical, which means that it isn’t an ethical option-–it can not be considered or justified. The fact that the Ayalas’ wrongful act saved one sister while creating another cannot make a wrong right.

It only makes it seductive, corrupting, and dangerous.

24 Comments

Filed under Arts & Entertainment, Bioethics, Family, Gender and Sex, Health and Medicine, Journalism & Media, Religion and Philosophy, U.S. Society

24 responses to ““Grow Your Own Marrow Donor” Ethics and Consequentialism: The Ayala Family Saga

  1. Chase Martinez

    I have to wonder if they could have looked at the extended family.

  2. Joshua

    Here is to hoping “The Island” never comes true. This already puts us towards that twisted, seductive possibility.

  3. Karl Penny

    Sometimes I want to jump up from my chair and applaud after reading one of your posts, Jack. This was one of those times. I’m afraid you may be swimming against a strong current, however. The sentiments on the other side appeal to much to the warm, fuzzy side of our natures. “All her children are alive. They’re happy. There’s so much love in the family. Who could doubt that this was a good thing after all?” Next to that, the people who still doubt seem like grumpy curmudgeons, afraid of medical science because we are afraid of the future. If the Ayala story represents the wave of the future, however, we should be very afraid.

  4. Jeff

    Wasn’t this the premise for My Sister’s Keeper?

    (I can’t STAND Jodi Picoult…)

  5. Fred

    People have children for many reasons, some of which are utilitarian. In most of the world, children are born, in no small part, to take care of the parents in their old age. It seems to me the issue pivots on the “but for” test: But for the needs of the sister, she would not have been born. Could not the same be said of billions of children, if you substitute the future needs of the aged parents in place of bone marrow for the sister. Does this make these births unethical? Some cultures have many children because so many die in childhood. Could they also have been hedging against the loss of the sister with another child?

    I admit I have mixed feelings and see your point. Something about the calculated medical nature of it gives it a weirdness factor but I don’t know if it is really different than any other utilitarian reason to have children (such as, at a societal level, to pay for Social Security).

    You don’t pick easy ones.

    • Having children to serve as cheap labor is a good ethical issue, but the Ayalas transcend it by the added offense of using a child as a donor without cognition or consent. Presumably some MDs would refuse to do such a procedure.

      • Karl Penny

        I would hope that some MDs would refuse to do such a procedure. If they would not, then medical ethics are in a place that already makes me very afraid of the future, as alluded to earlier.

  6. Law Warrior

    Bottom line this is dealing with the cloning of human cells. Cloning on any level should be looked at in a serious light. If we do one cell cloning,where will this open doors for a future? Is this really a message we want our society to follow? Yes having any family member facing death can be scary,but only if we allow fear to enter into the picture. Why can’t death be a part of life anymore? Why must we as a society keep looking for that big fix of living forever. Who really wants to live forever anyway? Disease in the animal World is for weeding out the weak allowing for the stong to continue the species. Humans are mammals so why must humans take the unethical road to immortality……….

    • Dwayne N. Zechman

      Here’s one reason: Each and every one of us . . . mammals . . . has a strong survival instinct deeply engrained in us. It is because of the existence of this instinct that our laws and our culture never truly condemn anyone for acting on that instinct. Best example: killing someone in self-defense.

      It is also why we lift up as heroes those who act in opposition to that instinct to accomplish some sort of good that wouldn’t be possible otherwise. Best example: New York City Fire and Police at the WTC on 9/11.

      However, this story is not an example of that. The parents took these steps to save their daughter, not themselves.

      –Dwayne

  7. crella

    Excellent article. I find this kind of thing horrifying, but am in the minority. Most people I talk to see it as a ‘touching’ story. It would be, had the sister voluntarily donated marrow, or made some other conscious sacrifice or effort to save her (such stories *are* touching) but this child was used as a tool.

  8. Pingback: “Grow Your Own Marrow Donor” Ethics and Consequentialism: The Ayala Family Saga | Ethics Alarms | Freedom for All

  9. Pingback: Explain: How is Remaining Childless “Selfish”? | Forming The Thread

  10. Cathy

    Interesting. So to you, a child must be born of love. So what say you of all the children not born of love? Is their existence less valid to you?

    Interesting also that you speak about consent, as if this is paramount to anything that can happen to your body. Why do you vehemently oppose abortion if the fetus does not have consent to occupy the organs of the woman? I thought in life or death, surely *her* consent is second to the fetus?

    And since we are talking about consent: infant boys don’t consent to their foreskin removed.

    Children don’t consent to any medical procedures, including putting marrow INTO their bodies. So if the parents of a brain dead child can consent to the donation of their child’s organs; why can’t they consent to the donation of bone marrow?

    I’m not asking you to alter your views; I’m merely asking you to be consistent in them.

    If it’s wrong to take blood, marrow or organs without consent, then it’s also wrong to force a woman to donate the use of her entire body.

    • Cathy, I dealt with that (awful, illogical) analogy in an earlier post. It is not just unpersuasive, it’s desperate. A mother isn’t a bystander in the gestation of her child—she has responsibility from the moment of fertilization.

      Your entry into the topic is also illogical and desperate. I said nothing about a child “having to be born out of love.” Saying it is unethical to create a child only as a helpless involuntary donor for another child is unethical in the extreme, which it is, does not argue FOR any other kind of childbirth.

      Bone up on logic, analogies, law and ethics, and then we can have a coherent debate. This comment is just emotional leap after leap.

      There is nothing “vehement” about my argument. Try refuting it with facts and logic rather than fallacious assumptions.

      • Cathy

        Gonna have to disagree here. A woman has no responsibility to a fertilized egg. Responsibility does not extent to the forced use of your body. Consent to sex is singular. Just like consent to kissing is not consent to sex, consent to sex is not consent anything but that singular act. And consent can be revoked at any point. If I’m having sex and want to stop. My partner has to stop.

        If that were true, then all fathers have a responsibility to donate their organs and blood and marrow regardless of their consent.

        If no other living breathing person can use another’s body, even if they die, then a fetus doesn’t get special rights that no one else gets. THAT is logic.

        So if this child must consent to donate, then you are also saying every child must consent to all medical procedures. To which they cannot.

        • Gibberish.

          “So if this child must consent to donate, then you are also saying every child must consent to all medical procedures.”

          Jump ball! Please explain to Cathy what is so idiotic about this statement.

          Oh, hell, it’s too easy, for anyone but her, apparently: In the case of the marrow donor, the child is having a procedure that does not benefit it, but rather uses a human being for another’s benefit, a classic Kantian taboo, and inflicts risk and pain. In the case of a medical procedure for the benefit of the child, the child’s consent is presumed. If you don’t understand THAT, you are really out of your depth.

          One more comment that assertive and simultaneously ignorant, and I will consider the rare Ethics Alarms ban for mental deficiency.

      • Cathy

        No one consents to their creation. Further, what *you* consider an invalid reason is completely subjective. I may find it unethical to have another child when you cannot possibly give him/her one on one parental attention (the Duggars) but my views are as irrelevant to Michelle Duggar as your views are to the Ayalas Family.

        • No, Cathy there are well established rules of reason and logic, as well as facts. One’s desire to exist is an example of presumed intent. It is presumed that living creatures want to live, since all instinctively try to survive. Saying no one consents to being created is sophistry of the worst kind.

          Meanwhile, you are wrong about the Duggers, and are rejecting the way they are agreed upon. It is absolutely relevant to the Duggers that the society, if it does so, concludes that they are irresponsible. That’s what a culture is. We decide what’s right and wrong. The way we get fewer monsters who have children to make them permanent victims of their siblings is to make families that do it know that it is unacceptable conduct.

          If you don’t accept the concept of ethics, stop commenting on an ethics blog. “Everybody should do whatever they want” to is anti-ethical, and proven formula for chaos.

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