Diagnosing Life: Who Makes the Cut?

| June 26, 2018

“The uncertainties of life find no refuge at its beginnings.”
-Ethics Committee of the American Society for Reproductive Medicine1 (italics added)

Recently the United Nations Headquarters hosted the 11th session of the Conference of State Parties (COSP11) to the Convention on the Rights of Persons with Disabilities (CRPD). I was able to attend several side events related to the rights and empowerment of persons with disabilities.

It was at one of these events that something caught my attention. I heard the terms “preimplantation genetic diagnosis” and “premarital genetic testing.”  These two terms lie in a hotbed of discussion and ethics conversations in today’s world of reproductive medicine, especially as related to individuals with disabilities (see my earlier post on neurodiversity for further conversation). Bear with me as I briefly give a definition.

Preimplantation genetic testing (PGT), which includes preimplantation genetic screening (PGS) and preimplantation genetic diagnosis (PGD), “can be used to investigate the genetic composition of preimplantation embryos,” according to The Ethics Committee of the American Society for Reproductive Medicine, which published the article “Transferring embryos with genetic anomalies detected in preimplantation testing: An Ethics Committee Opinion.”1

In other words, PGT is genetic testing on the unborn, capable of detecting disorders and other “genetic anomalies.” The opinion article goes on to discuss the ethics of choosing to implant or not implant embryos with “genetic anomalies,” if implantation is requested by the parents.1

Part of the controversy of PGD is related to in vitro fertilization (IVF), defined by the Mayo Clinic as “a complex series of procedures used to treat fertility or genetic problems and assist with the conception of a child”.2 In short, eggs are taken from ovaries, fertilized outside the womb in a lab, and then the resulting embryo is implanted in the uterus.2

For those who believe life begins at conception, one issue lies with the “leftover” lives not implanted. The Center for Bioethics and Culture Network (CBC) also discusses many other complications and potential issues with IVF, including the “payoff” for fertility clinics and pharmaceutical reps, as well as emotional and health risks for the families involved.3 Further controversy arises from the selection of which embryo(s) to implant or to refuse to implant, discussed in more detail in the Ethics Committee article.1 How far could we take the idea of a “genetic anomaly” until it means whatever the parent or scientist wants it to mean?

I asked one of the experts on the panel after the session at the UN to tell me more about these terms and their purposes. I asked what happens to the other babies created in the IVF process, and he said they are “discarded”. His viewpoint, from my perception, was that there is no ethical issue (or at least it is a separate issue altogether) before implantation. He seemed to believe the real ethical issue comes after implantation, an opinion shared by many scientists and doctors. And yet, who has the authority to decide that implantation is the boundary line of whether or not a life is worth protecting?

I also asked for clarification regarding the testing procedures, “so the purpose is to eliminate disability from the family?” He answered, “yes”.

It shocked me that we were in a session on fighting for the rights of persons with disabilities, and he was able to look me in the eye and say “yes” so easily to that question. The line here is very thin, and we must take the utmost care when assessing the ever-changing medical field and its ability to manipulate human life.

The issue is that PGD can be used for good or for evil and adds to the ever-entangled web of bioethics in the postmodern world. This is just one example of why it is so imperative to protect the sanctity of life at all levels…because we should not have the authority to decide who “makes the cut” to be given a chance at life.

…we should not have the authority to decide who “makes the cut” to be given a chance at life.

The conversation and subsequent research leads me to this question:

How can we harness the international and fervent fight to support and cherish individuals with disabilities and channel this also into protecting the sanctity of all life, including the most vulnerable: life between conception and birth?

That no human is capable of determining when life truly begins begs the utmost caution be taken here.

“The uncertainties of life find no refuge at its beginnings.” 1

Who will you trust with the uncertainties of life?

May our intellectual humility and faith point us back to the Sovereignty of the God Who knew our genetic code, our hearts, and our days before we were born.

 

  1. Daar, J., Benward, J., Collins, L., Davis, J., Francis, L., Gates, E., . . . Westphal, L. (2017). Transferring embryos with genetic anomalies detected in preimplantation testing: An ethics committee opinion. Fertility and Sterility, 107(5), 1130-1135. doi: 10.1016/j.fertnstert.2017.02.121
  2. Mayo Clinic Staff. (2018, Mar. 22). In vitro fertilization (IVF)Retrieved from https://www.mayoclinic.org/tests-procedures/in-vitro-fertilization/about/pac-20384716
  3. White, Christopher (2016, Jan. 6). IVF pays off…For whom? Retrieved from http://www.cbc-network.org/2016/01/ivf-pays-off-for-whom/

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