By now many of you are aware of the proposed Human Fertilisation and Embryology Bill (HFEB) in its second reading in the House of Lords in London and the response of the British Deaf Association opposing this bill due to its eugenics implications, which include the potential to place restrictions on certain kinds of reproductive practices. This topic has special meaning for me – for the past four years, I have been writing a Ph.D. dissertation that evaluates the moral permissibility of using genetic technology in order to ensure the birth of a deaf child.

I first set eyes on the Palace of Westminster (where the House of Lords is located) last October, when I was in London attending the Disability Capital 2007 conference to give a talk on genetic selection from my dissertation research titled “Deaf Genes and Hearing Parents: The New Eugenics.” Little did I suspect that in a several weeks this topic would become more relevant in London than I could have possibly imagined.

On 22 November 2007, deaf lawyer Alison Bryan posted this blog about the Human Fertilisation and Embryology bill in the House of Lords.

On 28 November 2007, the British Deaf Association (BDA) issued a draft letter opposing the proposed change to the Human Fertilisation and Embryology Bill in Clause 14, section 4, number 9 (Lines 23-30, Page 10), which states:

Persons or embryos that are known to have a gene, chromosome or mitochondrion abnormality involving a significant risk that a person with the abnormality will have or develop—
(a) a serious physical or mental disability,
(b) a serious illness, or
(c) any other serious medical condition, must not be preferred to those that are not known to have such an abnormality.

The BDA letter raises two important ethical concerns in response to this bill:

1. Who is not permitted to reproduce?
2. Who is prevented from coming into existence?

For several reasons, I’ve been following the HFEB quite closely. Since I am a philosopher and bioethicist, I decided to blog about these issues. My main goal is to clarify the issues and to explain how these two questions connect to the text of the HFEB. Today’s post focuses only on the first question, which deals with reproductive liberty, or the freedom to bear children. In the few days, I’ll follow this post with a post that takes a look at the second question, which deals with genetic selection.

Who is not permitted to reproduce?

Let me preface this by repeating that I am a philosopher, and I am not trained in British law. Philosophers are trained in argument analysis and this is what my post focuses on. Breaking down the language of the bill is a good place to start.

Persons or embryos that are known to have a gene, chromosome or mitochondrion abnormality involving a significant risk…

Setting aside the issue of embryos (that’s the next blog), what does this mean? Well, one interpretation of this is that it establishes a group of people the law applies to – this is the class of people “known to have a gene, chromosome of mitochondrion abnormality involving a significant risk”. Hold on – what exactly does this phrase mean, “significant risk”? Interestingly enough, it is not defined anywhere in the HFEB. And what about “known”? How does a person find out if he or she has any of this genetic material? What if genetic testing becomes part of the accepted standard of health care? What happens to this information? Who safeguards this information – the same entity that is charged with upholding this law?

Continuing on with the language in the bill…

…significant risk that a person with the abnormality will have or develop—
(a) a serious physical or mental disability,
(b) a serious illness, or
(c) any other serious medical condition,

Now we’ve added ‘abnormality’ to our list of undefined terms. “Serious” is a popular word in the HFEB, modifying all sorts of physical variations. The problem is, we’re once again dealing with an undefined term. We do know this from the House of Lords debates: deafness is defined as a serious condition.

Finally, we come to the end of the clause:

…must not be preferred to those that are not known to have such an abnormality.

Here’s the plain English summary (as I understand it):

The class of people known to have genetic material with a significant chance of resulting in the birth of a person with a serious condition should not be preferred over people whose genetic material will not likely result in the birth of people with a serious condition.

There’s a real problem here folks. This is a pretty darn big class of people. According to the Genetic Alliance, a coalition of genetic advocacy organizations,

Currently, there are more than 1300 diseases for which genetic tests are clinically available, several hundred tests used in research, and even more in various stages of development.

I wonder how many of these genetic tests are for “serious” conditions? Undoubtedly quite a few – medical and scientific research agendas focus on what is well funded. Trivial stuff isn’t as well funded as the other stuff. You should be aware that a person can be a carrier for a genetic variation and appear perfectly “normal” (whatever that is).

The BDA draft letter makes this important point:

A related issue is that the language of this bill effectively prevents all people who hold carrier status for any genetically identifiable serious physical or mental disability, illness, or other serious medical condition would be prohibited from becoming gamete donors… the language of this clause makes it highly likely that a significant number of citizens will not be permitted to donate gametes.

To be sure, gamete donation is about donating eggs or sperm, and not everyone wants to do this, or thinks this is moral. I’ll concede that. But here’s another question: will reproductive services in England only be available to those with the right genetic material?

The BDA draft letter offers these two scenarios:

Deaf people seeking fertility treatment will be denied access to these services if they possess genetic conditions that result only in the formation of embryos associated with deafness. Consider the infertile deaf couple desiring to have a child. Before fertility testing commences, genetic testing is conducted on the couple, and results indicate that all of their offspring will be deaf. The infertile couple’s request for fertility services is denied for the reason that embryos associated with genetic deafness are not preferred. Thus, the couple is denied the opportunity to have any children based on the stated preference against ‘abnormality’.

…a deaf couple has one deaf child, conceived through IVF several years ago, who is currently in need of a bone marrow transplant due to illness unrelated to her deafness. The child is quite ill, and her best chances of survival will come from marrow donated by a well matched donor, such as a sibling. The parents hope to save their existing child’s life by conceiving another child through IVF, using PGD to select embryo with the best bone marrow match for their existing child. Since the parents can only have deaf children, and the law prohibits access to fertility services on the basis of genetic deafness, the couple is not only denied fertility services, but denied the opportunity to pursue the strategy offering the best chance of survival for their remaining child.

The BDA draft letter is written from a Deaf perspective, but the HFEB applies to many others. It has the potential to restrict “reproductive liberty” by excluding some people from pursuing the medical means necessary to have children – even if their genetic variation is completely unrelated to the reasons they cannot have children.

This is a blog that focuses on issues related to deaf people, so I’ve limited my analysis to the HFEB and the BDA draft letter. But the current language in the proposed HFEB will apply to many others as well.

So…what do you think?