Derek’s thoughts on PGD

This is Derek! Welcome to the blog post with lots of abbreviations.  IVF is full of ethical implications; one of which is the practice of genetic screening or Preimplantation Genetic Diagnosis (PGD). During the IVF process, doctors fertilize eggs in a petri dish and then implant one or two into the woman after waiting 4-6 days. However during the PGD process, the development of the embryos is halted around day 4 or 5 when they become blastocysts. Doctors then remove one of the cells off of the newly formed blastocysts, and this removed cell is then tested genetically for diseases such as Down Syndrome, Trisomy-18, Tay-Sachs Disease, Cystic Fibrosis, Osteogenesis Imperfecta etc… If the embryo tests positive for one of these diseases, then that embryo is discarded and only healthy embryos are implanted into the woman.

PGD offers hope for communities like the Ashkenazi Jewish communities where Tay Sachs is drastically more common compared to the rest of the United States population. This terrible disease causes the death of young children and is recessive as well which means many parents risk having children with the disease if they come in contact with another carrier. This disease is so terrible that the Ashkenazi community has actually set up a registry where romantic couples can check and see if both of the people are carriers before beginning to date. PGD however offers hope for carriers of these diseases because it allows for the removal of embryos which would have this disease.

I find the whole topic of PGD particularly fascinating, not only for the hope it gives some couples, but also for the ethical implications of using this technology. Megan and I became more aware of PGD not only through our journey of IVF but through reading a book titled No Easy Choice by Ellen Dollar. The book chronicles Dollar’s journey with the disease, Osteogenesis Imperfecta (OI) or more commonly known as brittle bone disease. The most extreme cases of children with OI cannot even survive childbirth, however for many people with OI they are able to live relatively normal lives albeit with extreme pain and scores of fractures. For children with OI, learning to walk is a terrifying ordeal as every fall or stumble possibly results in spiral fractures of the femur or broken hips. Painter herself suffers from OI and writes that by the age of 14, she had around 60 broken bones. Thankfully, after puberty these fracture rates plummet due to different biological factors, but the scars and pain remain.

Dollar discusses her family’s journey as they debated whether or not to use PGD on their future children. The dangerous part of OI is that it is a dominant genetic mutation which means that Ellen and her husband have a 50% chance of having a child with OI. While Megan and I are not carriers for diseases such as OI, PGD is a question that Megan and I had to wrestle with for our embryos in the IVF process. Is it ethical to use PGD upon our embryos to pick the healthiest of them?

Dollar and her husband had no fertility issues, and PGD wasn’t quite to the level it needed to be when they began their family the old fashioned way. They eventually discovered that their first daughter Leah had OI.  What followed is a series of tragic falls and hospital visits.  Ellen records that Leah didn’t learn to walk until she was two because of complications with OI.  When she did learn to walk, she broke her first bone at the age of two and a half.  She then broke three bones in three months.  After going another nine months, she fell and broke both her tibia and her fibula and her arm in one fall.  Due to OI, these are not simple fractures but compound fractures with bones sticking stomach curling angles.  Leah broke six bones between the age of two and four.

By the time Ellen and her husband decided to have a second child, PGD was further along and an option for Ellen.  The rest of the book is Ellen dealing and wrestling with whether or not they should use PGD to select their second child.  However because of Leah, she asks “By using PGD to ensure OI-free children, were we diminishings the inherit value of people like me , Leah, and others living with disabilities?”  Furthermore, she also wrestled with her moral obligation to her future children to alleviate their suffering.  What role does PGD have in our future world?

I think there are two questions at hand in this conversation: Is it the moral obligation of parents to relieve suffering of their children by any means necessary? And what role do those with disabilities have in society? When we partake in PGD and other means to remove the disabled from society, what are we saying about those with disabilities for example? Is it better for people with disabilities to simply not exist? Is there any benefit they bring to the world. Is it better to exist with OI than to never exist at all? The potential of PGD is forcing families to ask this question. When we engage in practices which remove disabilities from the world, we are subtly saying something about what it means to be disabled. Diagnostic techniques such as PGD and Amniocentesis make a statement about life with disability. Megan and I tested ourselves for these diseases and neither of us are carriers, so we forwent PGD in our embryos. As I write it, it feels like a cop out. I feel inadequate to tell those who have to make these decisions what they should or should not do. However, I know from my experiences with those who are disabled in some way that a disabled life is a beautiful life and one worth existing. Disability challenges our “abled” concepts of independence. It challenges Christianity’s hyper-intellectualization of faith by questioning what it means to have faith. There is much that our world gains from engaging those with disability. People with disability help those of us who are abled to realize that the value of life is far beyond what we produce.  A world without Down’s in not a utopia but a dystopia. By removing all disability, we remove the beauty of diversity. I write that all to say also that there is a place for relieving the potential pain of potential people, however before making these decisions, we must pause and contemplate what we are saying about life.

The second question is more difficult. Robert Edwards writes, “Soon it will be a sin of parents to have a child that carries the heavy burden of genetic disease.  We are entering a world where we have to consider the quality of our children” As parents, are we morally obligated to provide the best life and to remove the most suffering from these potential lives? I believe the answer is no. I have a moral obligation to not be negligent, however we are seeing an onslaught of hyper parenting. Parents feel the need to ensure that their children have the “best” whatever the best will be. The best school, the best tutor, the best whatever, and now there is the potential for children to have the “best” genetic makeup. I believe this desire for “best” is what is creating the rise in anxiety disorders among our children. When you are given the best, you are expected to be the best, and so you feel this ever increasing anxiousness to arrive. As parents we fail to aide our children when we bulldoze a path forward for them that eliminates all suffering. Especially as a Christian, I see potential in the redemptive nature of suffering both in my life and in the lives of my children.

PGD is a burgeoning technology which is only growing in its reach for future couples. It is a technology with both potential for great good but also for potential to shape how we view those who are disabled. In that context, it’s an issue that we should be thinking about and discussing

Ethical questions about IVF

This is Derek. I’m trying to write some too for the blog as we talk about our story. For this post, I’m going to discuss some of the ethical issues within IVF and infertility. I’ve put this into a question/answer format to answer questions that either people have asked us, we’ve asked ourselves, or our friends who have gone through IVF were asked by other people. I hope this makes it a little easier to see various objections to the process ethically, and kind of walks you through how we arrived at the decision we did.

IVF is incredibly expensive, so why don’t you just spend the money on adoption? Why don’t you just adopt?

I put this first because, honestly, we wrestled over this question more than any other. It hits close to home because Megan and I are passionate about adoption. We actively support and work with a special needs orphanage in China, and we think adoption is something Christians in the world should be more active in. IVF is also incredibly expensive and costs about the same amount as a new car. Is it justifiable for us to spend so much money on something unnecessary when there are plenty of other kids in the world that need parents? Should we spend money on something medically unnecessary when that money could be spent on adoption? First off, it’s absurd to think that only infertile couples should be asked this question. We rarely think about adoption before buying a car, or buying a new house, or getting the kitchen remodeled. Infertile couples do not solely carry the burden of adoption or the weight of financial decisions in lieu of adoption. “Why don’t you just adopt?” is a question that can be asked before any major purchase. Many object to the cost of IVF while failing to look at their own finances. It’s an easy way to pass the buck onto someone who we don’t understand. This is something we often do to the “other.” Any question that begins with “Why don’t you…” is often a failure to empathize or understand a person’s background. Secondly, I can’t explain how much infertility hurts, and how strong the desire for biological children is. We really wanted to explore all of our options, and after three years of trying, we needed to take this path to its end whether that was biological children or not. While we were working with the fertility clinic, we also were actively pursuing adoption through various programs in the Atlanta area. However, we decided we really wanted to explore our options for biological children until we ran out of them. We decided we would give one round of IVF, and then stop. But at least then we could have closure, and wouldn’t have to play the what if game.

Doesn’t IVF create a lot of embryos which in turn causes the death of many unborn babies?

I get this concern, however it’s primarily based out of a misunderstanding of biology. In “normal” pregnancies, women regularly miscarry around 20% of the time. On top of that, it is estimated that around 30 to 50% of the time eggs which are fertilized naturally miscarry before even implanting in the woman’s uterus. This is why even fertile couples don’t get pregnant the first time a woman ovulates and has sex. This is why no doctor will consider you infertile until a year of actively trying (which is incredibly). Sometimes (obviously not all the time) when a woman’s period is late it’s because an egg was fertilized but didn’t make it past the first couple of days. There’s a natural dying off of fertilized eggs because of natural factors at play. We see a lot of the same tendencies and percentages at play in fertilizing eggs during IVF. Also, I find it interesting that the same people that would like to decry IVF creating life through embryos dying do not hold funerals for miscarriages. We obviously see a difference between a baby and an embryo in the way we as a society treat losing each. Miscarriage is incredibly painful, losing a child more so. While all life is sacred (embryonic or not) and should be treated with incredible dignity and respect, there is also a difference in our treatment of these two and should be.

Is IVF playing God?

The rationale goes that we should accept what God gives us and that IVF is taking life into our own hands and trying to replace God. I would push back against this. We regularly do not accept the hand given to us. I reject the fact that I am near blind without corrective lenses, so I wear glasses. Oliver was sick last week, and we gave him antibiotics. We play God every time we treat a disease or have life saving surgery. We give prosthetics to people who were born without the legs or arms. Aren’t we playing God every time we heal a disease or correct a birth deformity? IVF is simply curing the disease of infertility. IVF brings life to this world and undoes the damage of inferility in people’s live. It’s a beautiful thing and participating in the work of God restoring creation.

What about the left over embryos?

Before you sign up for IVF there is a enormous packet to fill out with what to do with the embryos. You can destroy them, give them to research, or anonymously donate them to another couple. We chose to adopt them out to another couple if we didn’t use all of ours. I was actually really excited about the option of donating unwanted embryos to couples who were struggling with infertility. Part of me was excited to help other couples in need, but the other part of me was excited to imagine every little ginger I see from now on as possibly my kid. Sounds weirder as I type it than it is in my head. However, many object to IVF but don’t realize adoption is an option. There is no need to discard any viable embryos created during the IVF process.

Is implanting so many embryos dangerous and does it cause multiple pregnancies? Will the doctors need to abort one for the others to survive?

You can always implant one embryo and in fact our fertility doctor demanded it for our first attempt. For the second attempt our doctor did not want us to do two embryos, but he understood and eventually after signing a waiver allowed us to implant both of them. Implanting 3 – 4 embryos at a time is something that is highly discouraged today, and was something more common when the percentage of success was much lower. The rates are so much better now that doctors want most couples to do one and at max two. At no point did any fertility doctor suggest we should abort one. Our high risk OB did offer that as a possibility, but we declined and she seemed pleased about that. She wasn’t pushy, and it was definitely not expected or encouraged just simply offered as a medical option, and after that day it was never mentioned again.

There are numerous other issues surrounding infertility such as suffering and the why behind painful issues like it. There’s even more advanced issues such as Pre-implantation Genetic Diagnosis (PGD). Hopefully I can write on here about some of those in the future. I think Christians need to start having conversations about reproductive technologies and bioethics.  The world is changing and creating questions that the Church is ill-equipped to handle currently. I believe we as a Church must move past the stigma of infertility in order to be able to grapple with these bio-ethical dilemmas that both this generation and the next will be forced to answer.