My Questions About the Ethics of Embryo Selection

It sounds pretty basic. A lovely young couple wants children, and they want those children to prosper and grow. They want to do as much as they reasonably can to ensure that those children have good, full lives. Happy lives. Lives that are as free from suffering and pain as possible. The problem is that they run the risk of bearing children with a gene that will probably cause a slow and painful death, albeit a death many decades in the future.

What should they do? Never have children? Adopt? Take the risk and conceive, come what may? Take the risk, conceive, and then terminate the pregnancy if the gene is present? Or try preimplantation genetic diagnosis, which involves creating embryos and testing them for the problematic gene and only implanting embryos free of the gene?

In the case of the Kolinsky family, as Gina Kolata reports for the New York Times, they chose preimplantation genetic diagnosis (PGD) in order to be certain that none of their children inherited their mother’s rare, painful, fatal neurological disease. As Kolata reports, the use of genetic testing and PGD is on the rise, and so the ethical questions associated with these tests are all the more relevant to all of us. As she writes:

Ethicists are divided about use of the method.

Janet Malek, a bioethicist at the Brody School of Medicine at East Carolina University, said that people who carry a gene like GSS have a moral duty to use preimplantation diagnosis — if they can afford it — to spare the next generation.

“If there is a paradigm example in which a parent can have an obligation to use this technology, this is it,” she said.

But David Wasserman, an ethicist at Yeshiva University and consultant to the department of bioethics at the National Institutes of Health, says there is no obligation to use it for diseases that do not start until adulthood. Eliminating embryos with such genes is essentially saying someone like Ms. Kalinsky should never have been born, he said.

I should say here and now that technologies such as PGD concern me for a host of ethical reasons, including the fact that we as a culture tend to let ethics follow technology rather than the other way around. PGD provides yet another example of a technology that people are using in the midst of an ongoing debate about the potential personal and social repercussions.

On a more personal note, after Penny was born and we were thinking about having more children, my doctor suggested PGD as a way to insure that we wouldn’t have another child with Down syndrome. I said no because of my various ethical concerns about the practice. At that point, I liked the idea of being sure that we wouldn’t have another child with Down syndrome. But if she had asked me a few years later, I would have said no not so much due to ethical principles but because I would have welcomed another child with Down syndrome into our family. And I know that I am glad that Penny was given to us and I never took the question of embryo selection any further than an abstract concept.

I’m not trying to pass judgment on the couple profiled in this article. I don’t think Down syndrome is the same as a debilitating physical disease, and yet this article, and the technology and ethics included raise important questions for us to consider. Here are a few:

Are there or should there be different ethical standards for people of faith and for those who do not believe in a God who creates, sustains, and nurtures life?

Even for people of faith who subscribe to the idea of God as a creator, what role should parents play in stewarding the lives of the children they conceive? (Which raises the question of whether embryo destruction is the same as abortion is the same as infanticide. I’m not going to get into that debate here, though I will mention my appreciation for my friend and colleague Ellen Painter Dollar’s treatment of these questions in her book No Easy Choice.)

Is near-certain physical suffering a good reason to cut short a human life? Can there be value in suffering?

What are the larger social effects of these technologies? (For instance, the article mentions that 2% of PGD is currently used for sex selection, widely regarded as an unethical practice. I also wonder whether research dollars could/should be spent towards gene therapy rather than embryo destruction as a way to try to overcome the physical suffering involved.)

What are the larger spiritual implications of these technologies? In a world of instant gratification, diversion, and entertainment, what place is there for waiting, for longing, for the brokenness and potential openness to grace that can come with dreams deferred?

I do not have all the answers. I wish the Kalinsky family well. But I also very much hope we will wrestle as a culture to better love the vulnerable ones in our midst.

About Amy Julia Becker

Amy Julia Becker writes and speaks about family, faith, disability, and culture. A graduate of Princeton University and Princeton Theological Seminary, she is the author of Penelope Ayers: A Memoir, A Good and Perfect Gift (Bethany House), and Why I Am Both Spiritual and Religious (Patheos Press).

Comments

  1. PGD and embryo selection is an area where I don’t think hard and fast rules can apply; reading Ellen painter Dollar’s book helped me see that even more clearly. Good job continuing the dialog, AJ.

  2. Thanks for the mention of my book. I found the NYT article you link to a really tough one in terms of pondering the questions you’ve named here and the many others that I cover in the book. In many ways, the profiled couple’s use of PGD is a no-brainer to me. A gene that certainly causes a certainly debilitating, certainly fatal disorder? Of course I would want to make sure my children didn’t get that gene. The mom in the story illustrates how one’s life can be full and joyful in the face of such a disorder. She is living a full and rich life one day at a time, in the knowledge that she will certainly die early, and after experiencing significant loss of function. She may even see ways in which her experience with the disorder has paradoxically enriched her life and relationships. Yet she still chose to spare her children the possibility of getting the disorder. That, to me, embodies the paradox at the heart of my own journey–that I love my life as it is yet wish I did not have my genetic disorder, that I love my daughter as she is yet wish she did not inherit it. Even though there is most definitely a place in this life for waiting, for wailing, for accepting the brokenness and pain that comes to us, it is hard for me to say that avoiding an awful, fatal disorder is unethical. I’m not a big believer in slippery slopes. I think it’s possible to say yes for PGD in this kind of circumstance, no for PGD for gender selection. (PGD for other disorders, where debilitating effects are minimal or nonexistent, such as Down syndrome, is a murkier business for me). But in the US, we have been unwilling to regulate any of this, with the net effect that it is available for pretty much any reason, so long as people can pay for it. That is not an ethical way to determine if/when PGD should be used. The biggest problem I see is that we routinely fail, as a culture and as Christians, to discuss the ethical concerns raised by reproductive technology in a fruitful way. So thank you for starting a good conversation here!

  3. Aaron Cobb says:

    Thanks for these reflections and thoughts. I agree that we need to think seriously about this technology.

    I have a number of questions about this use of PGD. I’ll keep it to just one here: does screening off embryos that have markers for disease and/or disability imply that these embryos do not have the same value as embryos that are free of these genetic markers?

    • Amy Julia Becker says:

      Aaron, Thanks for your question. I’m inclined to think that there are many reasons why people screen embryos, and one of those reasons is to prevent suffering. I don’t think that necessarily implies that a life with suffering is a less valuable one, but I do think it puts suffering in the place of the worst possibility, the thing to be avoided at all costs. There are reasons for this posture, of course, but as a Christian with a faith in the God who has entered into our suffering, I also disagree with the notion that suffering should be avoided at all costs on behalf of our children. As you know, many people believe parents OUGHT to screen, believe it is irresponsible to bring children with T21, T18, etc into the world at all. Plenty of people are in the middle and think it should simply be a matter of personal choice, but I do think the place of suffering and the role of parents in preventing children from suffering is central to the debate.

    • If I may respond to this question even though it’s not my blog….Some people would say yes, others would say no. A medical ethics scholar did a thought experiment in a journal article once, whereby she set this scene: Imagine you are a parent standing with your child at an intersection waiting for the “Walk” light. An angel appears and tells you that if you step off the curb when the walk light turns green, your child will be hit by a car and become a paraplegic. Does your decision not to step off the curb mean that you don’t value people who are paraplegics? Of course not. As someone who has used PGD to attempt to screen for a disabling genetic disorder, and who has written about the topic extensively and interviewed other parents about their decisions, I believe that most decisions to use PGD to screen has nothing to do with how we “value” one type of prospective child over another. It has to do with the very human impulse to protect our children from suffering when we can. That said, I do believe that some (most?) decisions to screen pregnancies, either through PGD or through early prenatal diagnosis, are influenced by cultural norms that don’t value people with genetic disorders as highly as healthier people. As a culture, we do tend to assume that the lives of people with significant physical or cognitive challenges are full of suffering and less meaningful than the lives of others (or meaningful only because of what those lives teach the rest of us, rather than being meaningful in themselves). So…yes and no!

      • Ellen (if I may),

        Thank you for this reply. As a parent who has lost a child to a chromosomal abnormality (Trisomy 18), I can understand the impulse to protect our children from unnecessary suffering. I appreciate the way that you’ve framed that discussion. And I appreciate the analogy about our valuing of individuals with paralysis – the decision to screen-off embryos doesn’t necessarily imply a negative attitude toward those who are already living with the conditions one is seeking to screen.

        I want to think about this more, but it strikes me that the analogy limps when one looks at what screening off involves. If one holds that all human embryos are full members of the human species with the same inherent value as every other human being, then screening off (where this means ending the embryo’s life) means protecting the embryo from a life with potential suffering by terminating the life. It seems that this would imply that there are some human beings for which it would be better for that human not to live than to live with suffering.

        Granted all of this assumes that every living embryo has the same inherent value as every other living human being and I know that this is a big assumption.

        I will continue to think more about these issues. Thank you for your response.

        • You’re welcome. And yes, you’re right…How you think about human embryos adds a level to this conundrum that the “walk light” scenario doesn’t address, because in that case, you’re talking about protecting someone who is already living as an independent human being.

          • Amy Julia Becker says:

            Ellen and Aaron, as always, thank you for modeling civil dialogue that allows all of us to think more deeply and clearly about issues that are not easy or clear.

  4. Thoughtful questions in hard places.

  5. I think some medical definitions are in order to clear up questions.

    > embryo destruction is the same as abortion

    No. Abortion is the termination of a pregnancy. A pregnancy is defined as beginning at implantation, usually in the uterus, or it could implant in a Fallopian tube, and called an ectopic pregnancy. At any rate, before implantation there can be no abortion, because there is no pregnancy.

    > is the same as infanticide

    The problem with assigning personhood—usually by the religious because they say a “soul” begins at fertilization—is that these microscopic “people” are dying on sanitary napkins in bathroom trashcans. Why? Because most fertilized eggs do not implant and lead to a pregnancy.

    If blastocyts in a lab are going to be counted as fully human with “souls,” the problem isn’t really technology, it’s getting your own theological house in order first.

    Baptisms, naming, and funerals are in order for these discarded human life “souls,” if you want to define them as equivalent to any other human life. And if you’re not going to treat embryos that are not implanted as “souls” in your bathroom, then why should a lab value embryos that are not implanted differently than you?

    Mote, Beam and all that.


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