ASK Musings

Last week was busy. In addition to writing two essays (which I turned in Friday, so the weekend is FREE), I attended three events related to my field of study, but not required or even directly sponsored by the LSE. The first I’ve already written about. The second and third were a lecture and seminar hosted by Gresham College and NYU in London on the Ethics of Reproduction. Specifically, it was a lecture on embryology and pre-implantation genetic diagnosis (PGD). It was followed the next morning by a smaller seminar where we were able to have more of a conversation. Really, really interesting stuff.

Baroness Ruth Deech spoke first. She has an interesting background – she was in charge of th UK Human Fertilisation and Embryology Commission (HFEC) for many years, overseeing rulings related to IVF (in-vitro fertilization) and genetic research. I must say that while much of what she said I found interesting, I do not think she and I would agree on many fundamental issues. For example, I believe she clearly thinks that the only real family involves a heterosexual couple, which I obviously find to be absurd.

The UK has a very regulated industry involving IVF and genetic studies. Unlike in the US, where one can post a request to buy eggs and pay the donor for more than expenses, the UK does not allow it. The goals of the HFEC are to save life and support research. Some of the thinking is that with PGD, it is more moral to test embryos for debilitating diseases and not implant them than to implant, find out about these diseases and then abort.

This has of course raised some serious concerns from members of the disabled community. One of the strongest responses to this type of screening technology has come from the deaf community, where family members are concerned that deaf parents may screen for deafness, not only slowly decreasing the deaf community but also making the deaf (and others with screenable disabilities) even more marginalized. For example, let’s say someone is born deaf when their parents theoretically could have screened for it. Will people assume the parents didn’t love their child enough to want them to be able to hear? Will communities of people with disabilities, or research into ways to treat disabilities, become less important because some can screen away for it?

One interesting question that came from this is that there were cases of parents who were deaf wanting to screen to ensure their child WAS deaf. In the UK that is not allowed – you can screen out a characteristic that is seen as unhealthy, but you cannot screen in for the same characteristic, nor can you screen for gender. However, you can screen for gender if the disease of concern is carried on the Y chromosome.

A question that was raised related to this entire issue was this: does one have a right to be a mother? Baroness Deech does not believe so. She thinks the closest thing would be a right to try to become a mother, but even that, she admitted, tends to really be for the people who can afford it. It’s an interesting ethical topic

The other speaker was Rayna Rapp, who teaches on Anthropological Research at NYU in the states. She spoke a lot about how reproductive technologies are used in religious communities – for example, tay sachs screenings in the Jewish Community. Much of what she had to say had graphics to go with it, so I can’t illustrate it really properly.

It was a really interesting discussion. I find the PGD aspect fascinating, especially in the US where there isn’t the same type of regulation. I am also interested in the financial aspects – once again it seems like only the well-off are able to screen out for certain diseases, or are able to even use IVF in the first place. I’ve often found myself torn on IVF, given how many children exist already without homes. But I’ve also never a) wanted kids and b) faced infertility.