Genetics ‘stuff’ might have died somewhat with the virtual unopposed passage of Clause 14/4/9 of the HFE Bill through UK Parliament and burn out on the part of those of us who have spent so much time and emotional energy trying to bring to public awareness the consequences of the Bill. But it looks like rearing its ugly head in the Netherlands; Stop Eugenics always warned that what becomes law in UK tends to be copied elsewhere, but I’m sure none of us will take any pleasure if those words are vindicated.
We could really have done without UK’s See Hear smashing and thrashing a lot of big thick nails into the coffin of what has been such a heartening and soul-fulfilling International campaign of which there is much to be inspired by; more on that later.
The HFE Bill is something that certainly should be treated seriously. I’m writing under the assumption that it appears as if 14/4/9 is about to pass through Parliament and become law, and unless there is some dramatic intervention, here is what it will mean.
As is well known most deaf babies are born to hearing parents. Deafness, rightly or wrongly, is still looked upon as something of a deficit in our society, the loss of a sense, a disability that a child should be prevented from having if at all possible, and in that context the vast majority of parents tend to feel grieved when they learn their child is deaf.
We also know that 50% of deafness is genetic, and therefore unknown. There is not a lot that can be done about that and therefore deaf babies are still going to be born (unless, of course, Tom Cruise comes to the rescue in a Minority Report kind of society where balls roll down a chute to warn the medical-police of a deaf baby potential so in swarm the cops to pry apart the couple from the act of copulation).
The hearing parent may want to know why their child was born deaf. If they are thinking of having another child, they may want to know the chances or possibilities of their future baby being born deaf. In the past such questions would be left to speculation, unpreventable, chance, wait and see, etc.
Genetic counselling, however, offers couples the opportunity to go for a chat and explore their questions and concerns. What is more; we will now have a situation where it is legally possible to create a ‘designer hearing baby’.
Ok, it isn’t a simple or cheap solution right now; the couple will have to go through the process of IVF, because that will enable embryo’s to be removed from the womb; and they will then be able to go through a process known as Pre-Implantation Genetic Diagnosis (PGD), which will enable a test to be undertaken to identify if an embryo is likely to be born deaf or hearing.
Currently it will only appeal to those rich enough to afford it, because this is expensive (they pay for IVF and also for PGD).
Sure, only the connexin 26 gene can be identified from this test, but it is would not surprise me if the test was expanded in future to identify the hundreds of other genes for deafness that are known (300 at the last count).
A couple may legally undergo PGD screening to see if they can identify the deaf/hearing status of the embryo. If it is found that there is a mix of deaf and hearing embryo’s, the next step is very simple. The hearing embryo(s) are the only ones that can legally be implanted [because deaf genes are highly likely to be regarded as ‘abnormal’ under the terms of the clause], and so therefore the female will have the hearing embryo put inside her and with it comes a high chance/near certainty that their child will be born hearing.
Of course, there is no guarantee: it could well be that all embryos are found to be deaf. Then the couple will have the choice of deciding whether it is better off having a deaf child or no child at all.
But when the first ‘hearing’ child is born from IVF via PGD I’ll hazard a guess the chances are high that this will hit the news, presenting an overjoyed couple with a hearing baby. Other couples in a similar situation may then want to look at the possibility of the same kind of service for themselves, encouraged no doubt by genetics industry spokespeople who consider deafness as an illness, a disease to be eliminated and eradicated, and a drain on taxpayers money. I can just picture them now, in their white coats, speaking calmly about the miracle of genetic technology, the joy it brings to parents, the lack of resources to make this more widely available, the high expense that prevents people affording it, and presenting themselves as entirely impartial service providers with no vested political interest.
And of course we will have the ‘baddies’ too: those ‘moronic’ and ‘sick’ Deaf people who see nothing wrong with being Deaf, taking great pride in language and culture, and who see the technology as yet another means of reducing if not eradicating Deaf people from society altogether. The media story will begin by highlighting a ‘frenzied’ group of Deaf people wanting to force hearing parents to have deaf babies, to deny them the choice of PGD; and in the process the media will whip up yet another anti-Deaf hysteria field day.
We have already seen a dry run of that in the press with the furore over the HFE Bill, which See Hear, to its shame, has tried to minimise with a narrative that treats the whole things as a silly little fuss over nothing.*[See End Note]
I was fascinated to read how the press has treated the story of the yet to be born baby that has been through IVF and PGD to ensure he/she will be born without carrying hereditary breast cancer. A couple had decided to undergo this process due to the high incidence of cancer in their family. The thisislondon report was typical of many I read, headlining the process as the creation of a ‘designer baby’; I am fascinated by the media depiction since one might assume the elimination (or at least the reduction of) the potential for a baby to develop cancer as an adult would be hailed as universally positive: and yet here they are calling the process the creation of a ‘designer baby’.
Yet there was hardly any mention in the media that the screening out of deafness, which the media widely regard as being a bad thing, would equate to the creation of a ‘designer hearing baby’.
Interestingly, the reports highlight something else that is quite crucial: this screening process does not guarantee the baby will not develop cancer; it reduces the risk (albeit considerably they report).
I don’t personally think that particular practice is necessarily a bad thing to do, to harness and use genetic technology for screening out something like cancer. Nobody that I know of celebrates breast cancer; in Edinburgh they have an annual ‘through the night’ walk to raise money to go into research to seek cures for such cancer (called the MoonWalk) but with the Deaf community we have a group that celebrates sign language and Deaf culture.
If our energy is waning and the baton looks like being passed on elsewhere, I wanted to take this opportunity to celebrate the positives from what’s come out of the opposition to Clause 14/4/9: Stop Eugenics may not achieve its aim of getting the Clause scrapped, but it did give the world a glimpse of what’s possible. Via cyberspace, a true campaigning network force was created (which incidentally I read elsewhere is becoming quite a common means of organising protest in the 21st century). The established charitable organisations were largely on the fringe (though the National Deaf Children’s Society did early on release a statement opposing the Clause); links were made with International organisations that represent the interests of Sign Language People (such as the World Federation of the Deaf); the odd media article was truly insightful, the blogosphere rocked with some stunning pieces of writing, while many within the genetic and medical community recognised the injustices of the clause and said it could easily be scrapped; the radio proved probably the most surprising outlet of them all for dissemination of the view of those opposed to this Clause. The British Deaf Association delved in early on, quickly recognising the implications of the Bill. There was a march organised by people unconnected to Stop Eugenics, which was made up largely of young Deaf people. Disability organisations and writers even got involved adding their words and voices in opposition; there have been many positives too long to mention: the setting up and maintaining of the website; creative posters and pictures opposing the Clause; that incredibly powerful ‘Stop’ video; translation of all kinds of material into BSL (done entirely voluntarily); transcripts of radio interviews into English by the superb Team HaDo (again largely voluntary); Tomato and Paula’s hectic international interviewing schedule; meetings with the Department of Health and at Wales Gene Park, and so on.
This was all achieved in the space of less than 6 months, when fully-paid up politicians, government departments, civil servants, and all kinds of other organisations, have had years to prepare their arguments.
If there are any group of people or scientists who are working on something for which others hold a totally opposite view, consultation and open discussion and debate is essential before any kind of policy making is made for legal consideration; but in this case that has not happened…Oh, I forgot, the UK government does actually legally require a consultation process with affected parties to take place…only it appears to have been brushed aside in this case.
This is far from the end; it feels to me just as if the ignition has been turned on to fire up and start a brand new car.
[* Note: As a comparative example, look at all the mighty fuss kicked up in the UK over the 42 day terrorism detention extension…critics are universally agreed that hardly anybody will be locked up for so long (though legally they can be), but they also know that is far from the point, it’s arguably a blatant attack on civil liberties generally. Bit by bit those days have extended by the UK government over the last few years…there is a mighty argument about it, some are solid in their support, others solidly against and a lot of people in the middle. It comes on top of the growing number of CCTV cameras, surveillance in general, increasing, more police powers to stop and search people on the streets they suspect of possession of weapons, substances, or whatever, possibility of ID cards on the way, etc. That doesn’t make people stupid because they have different views on these issues, or sometimes are not always entirely clear of the arguments; but they do have some sense of feeling threatened by these laws and articulate that in different ways.]