ON DONOR BABIES – A Guest Editorial

ON DONOR BABIES – A Guest Editorial

by Dr. Barbara Katz Rothman

So now there’s a need for baby parts. Imagine that.

Another miracle of modern science. It seems that transplants of the bone marrow of a sibling can sometimes be the only real hope for children otherwise dying of leukemia and some other cancers.

It starts off simple. A family has a few children, one is dying, another proves compatible and volunteers – or, as in the case of very young children and babies, is volunteered – has a procedure done that is rather messy, unpleasant, painful, but not very risky as such things go and the dying sibling recovers. A narrow escape, much joy, probably some tension, but certainly much gratitude enters into the sibling relationship. Life goes on.

It gets less simple. A family has only one child, one dying offspring. A teenager, too old not to understand just what is happening. So the parents, a mother no longer really young, but not so very old either, gets pregnant to try to create a donor. The parents understand the risks: The risks of the later pregnancy; the risks that the child conceived for this purpose won’t accomplish the purpose of its conception: Only one in four sibs will be a suitable donor. It’s a long shot. And time is short.

And now the ethicists chime in, asking if this is a suitable and appropriate reason to conceive a child at all. Even in the face of all this tragedy and worry, some of us have to stifle an urge to chuckle. Weren’t these guys (or their counterparts) not all that long ago all worked up over the ethics, the morality, the theological challenges, of women choosing not to have children? Now we have to explain to their satisfaction why we are choosing to have one.

I personally have given up by now on trying to figure out what a good reason, a morally satisfying reason, would be to have a child. It can’t be for the sake of the child – unless you believe, as I cannot, that there is a cluster of souls hovering, waiting for us to create bodies-as-housing-units. And if it is for any purpose in this world, if there is a goal for this child-to-be, then inevitably one is opening the door to failure, to disappointment, to interfering with this person, when it gets to be a person, choosing her or his own destiny. Take the classic patriarchal reason for having a child, to “carry on a family name.” Girls are always more-or-less failures then. And boys? What if, gay or straight, he chooses not to have children? Or what if the parent wants more generally to continue some plan, some culture, some life force? What if that is not the plan or culture or life force the child will choose?

All of the reasons for having a child are in some way selfish, and virtually all of the reasons can in some other way be met – and in a way that might, in a totally pure moral calculus, be preferable. Have a lot of love to give? There are surely already in this world plenty of people, including children, needful of that love. Want to raise a child who will contribute to the world in some way? The energy it takes to raise a child could be put directly into contributing. All in all, I can’t figure out a good reason to have a baby, yet I know that it can be a very good thing to do.

Anyway, here’s a family with their dying teenager and their growing pregnancy. In my opinion, they have a better reason than most for making a new baby. Even if this transplant thing were not an issue, they would have some good reasons for making another baby. Of course, no child is, or could be, a replacement for any other child, but the fact is, if their only child dies, it’s hard to blame them for wanting to continue to be parents, for wanting to have another child to raise. Even if this child turns out not to be a suitable donor, sad as that would be, this baby is not a pointless, wasted object in the world. The parents have said they want a child as a child, not just as a donor, will raise it with love no matter what its bone marrow compatibility.

Somewhere, the newspapers tell us, there was a family that followed another scenario: Used the baby as a marrow donor and then gave it up for adoption. A real story? Apocryphal? It certainly taps into fears we have about selfish parents, rejecting parents, parents who use their children.

These things always start out relatively simple and end up getting more and more complicated. Latest newspaper stories: Now it is “half siblings.” A man has a child dying of leukemia, the need for a donor is urgent. And he has other children: Three-year-old twins, with another mother. He doesn’t have custody of these children – he cannot make decisions for them. He is not their caretaker or prime parent.

Who knows just what his relationship with these children is? The papers tell us he was not married to or living with their mother, he does not live with the children. Maybe he is a devoted father, maybe he isn’t. He wants, he needs their bone marrow, if it is compatible. He’s fighting to get the compatibility tested, clearly showing some devotion to the other child, the dying one. Let’s give him benefit of the doubt – a man who loves all his children deeply, trying to make the same decision we would understand in the “simple” case, the intact family with a dying child.

And what of the twins’ mother? She doesn’t want the children used in this way. And who knows just what motivates her? Maybe there is anger toward the father; maybe this is a punitive act on her part. Or maybe she is trying to do what she is supposed to do in this world, protect her children from harm. Any of our children might be the perfect bone marrow donor for someone. You don’t have to be a sibling, it just increases the odds. Any of us might be. With some motivation, with the right testing programs and database, any of us might be saving a life right now with the appropriate donation.

Now the issue has gotten well and truly complicated. Do fathers have rights to the bone marrow of their children? Do siblings have rights – moral rights-to these donations? Legal rights are another issue: The law has been pretty clear that nobody has rights to use anybody else’s body against the person’s will or, in the case of young children, against the will of their custodial parents.

There have been some exceptions made to this and, on the whole, the exceptions have not served women very well at all. So let us try to leave the law the way it is. But let’s ask ourselves some questions about moral rights, moral obligations.

When we hear that the world has people who need something from us, we know that it is true and we give. Write a check.

Sometimes, anyway. And what of things dearer than money? Blood, marrow, pain and the risk, of our life and health? And what of things dearer to many of us than that: The blood, marrow, pain and risk, even slight, of our children?

Who owes what in the world? More classically, am I my brother’s keeper? Half-brother? Anonymous stranger? Just how much do we owe each other?

If I could answer any of these questions, I could resolve this dilemma. Instead, I find myself wondering whose idea it was to look down this path, to take this direction to seek cures to diseases?

The ethicists – and the journalists forever interviewing them – always seem to stop their questioning at the level of individual decision making: Is this parent acting responsibly? Does this mother have a moral right to create a child as donor? But what about the ethics of the researchers who create these dilemmas in the first place?

The typical medical ethics case presented for discussion involves Doctor Goodguy sitting behind his desk when in walks Patient Problem, presenting an ethical dilemma. That’s not the world as I know it.

Who funded the research that looked into tissue-matching as a cure for diseases? Who thought it was a reasonable thing to investigate the possibility of people as bone marrow factories for other people? Mothers didn’t invent these situations, not as mothers. The media reports tell us that the patient requesting that her tubal ligation be reversed so that she can conceive a donor for her dying two-year-old is presenting doctors with an ethical dilemma. That’s not what it looks like to me. To me it seems that the people who did the research, the people who developed the treatments that use donations from living people and the clinicians who offer such treatments, are presenting parents and other patients with moral and ethical dilemmas that are all but irresolvable. Why don’t I see their ethics being dissected on the nightly news? How come the ethicists aren’t pontificating about their morality in the newspaper reports?

And bear in mind that all of this is happening in a context. If morally responsible people were overseeing the whole project of medical research and health care in America, or in the world for that matter, maybe there would be some very different medical ethics dilemmas facing us. Certainly some of these same issues would develop, but I think context does matter here.

All around us, children are dying of preventable diseases, diseases of poverty that we know we could fix with changes in priorities that most of us would welcome. As a society, we allow some children to die needlessly, invent Solomon-like dilemmas surrounding the treatment of others and then worry about the ethics of parents trying to work it out.

We can’t get the pollution out of the air, we can’t get food and housing to pregnant women and children, can’t get money away from the military budget – is it easier to take marrow from a baby?

Barbara Katz Rothman, a Professor of Sociology at the City University of NY, is author of several books on motherhood, most recently Recreating Motherhood: Ideology and Technology In A Patriarchal Society (W.W. Norton).