Thursday, January 27, 2005

Have a slice of controversy with a portion of ethics du jour

Somehow, this news slipped under my radar, probably because it issued when I was thrumming with hormones and crying in the middle of the office. But I was rummaging around online the other day when I came across this which reports the following:

"The Human Fertilisation and Embryology Authority (HFEA) are launching a wide public consultation into how clinics should protect the interests of children born through fertility treatment. Under new consultation Infertile couples could face routine criminal records checks before they are given treatment".

The consultation in question, snappily labeled ‘Tomorrow’s Children’ can be found here. I urge anyone living in Britain affected by fertility issues to read and respond to the questionnaire. The consultation paper focuses on three main areas:

• The kind of enquiries to be made of prospective parents – whether medical or social and which other professionals (i.e. social services agencies or the police) should be involved.
• The factors to be taken into account in the assessment – whether these should include medical, physical, psychological risks and social factors.
• Whether patients undergoing different kinds of treatment need different assessment and information – such as people using donor conception.

Suzi Leather, (the deliciously named Chair of HFEA), has said: “The law sets out the important principle that, before any treatment is given, clinics must consider the welfare of any child who may be born as a result. Our job as the sector’s regulator is to ensure that this is delivered in practice. There must be a reasonable, proportionate, fair and practical system that delivers an appropriate level of protection for children without unjustifiably hindering the treatment of people who need medical help in having a child."

Having read the consultation paper, my first point is that much of the news reportage of the issue has somewhat unfairly focused on the rather sexy angle of CRIMNAL CHECKS! FOR INFERTILE COUPLES! It should also be recognised that HFEA are talking about revisions to a Code of Practice rather than a change to the law. And at the moment, some assessment of medical, physical, psychological and social factors already takes place (or is meant to) prior to treatment. So in some ways, the consultation opens up the possibility for relaxing the current code.

However, the bottom line is that what the current consultaton throws into sharp relief is a key question: namely to what extent should infertile couples who require medical assistance to reproduce be treated differently than couples who conceive naturally?

I should start by saying that I view anything that HFEA says with a certain amount of wariness, primarily because I inherently distrust an organisation comprised of unelected representatives holding themselves out to be an ethical regulator and "fertility watchdog".

My views on the consultation proposals are this: On balance, I think that the legal requirement to take into account the welfare of any child born as a result of assisted conception should be generally be limited to questions of medical risk to the child to be born. I think that any further routine "social enquiries" involving any third party/agencies takes us into into dangerous territory, a tenuous ethical landscape where external value judgements and assumptions assume a crucial yet dubious importance. I think it's a slippery slope that has potential to give even more authority over a couple's family building choices to physicians and clinicians, who in some cases already have far too much power over the process, in my opinion.

I can fully apprecate the arguments that it would be preferable if drug addicted, child-abusing psychopaths did not become parents via IVF. Moreover I can see a thorny ethical issue in a scenario arising where a patient seeking IVF, apart from any obvious medical risk to the child, appeared to all concerned to be a wholly unsuitable candidate for parenthood. For that reason, I think there probably should be scope to make additional enquiries in exceptional cases where there is a clear and justifiable reason to do so. But even that makes me a little uncomfortable-because how do we define what is a clear reason? Who gets to decide if a certain factor is a "problem"?

Furthermore the whole issue generally makes me grapple with how we go about evaluating the welfare of the child - a child that is not yet in existence and may never come into existence. How do we fully and properly assess a future scenario that may never come to be?

What HFEA seem to recognise is that at present it can be very hard to to ascertain in all cases if there is a "problem" and if so how is that issue explored or resolved is a bit of a grey area. The consultation paper talks about using a patient questionnaire. But they also recognise that, cunningly, people with a potential problem which might preclude them from receiving treament might lie on such a questionnaire. At the moment some clinics make enquiries to GPs, but of course in many cases, a GP is really not going to be in a position to give any sort of meaningful evaluation of fitness to be a parent. I mean, I have met my GP maybe 5 times. Which leaves talking to a social worker, or the police.

The problem is that takes us from one end of the spectrum (not many checks) to the other (criminal records search, for example). Anything in the middle risk is fairly unsatisfactory, in that it risks pissing off potential patients (who frankly, are usually feeling vulnerable enough as it is) while failing to really ensure any problems are caught.

Findings on the use of the current "welfare of the child" assessment guidance indicate that patients are rarely refused treatment, suggesting that any benefit of the present system is disproportionate to the time and resource required to carry out the checks. I'm guessing that has a lot to do with the fact that most people who reach the point of seeking assisted conception have already thought long and hard about parenthood, have already undergone a certain amount of intrusive and painful interventions, have already made difficult decisions about family building.

But leaving aside all the ethical dilemmas, I have to say that on an emotive level I simply find the whole notion that infertile couples should have to contemplate the possibility of additional hurdles, such as an interview with a social worker, or a criminal record check to be repugnant, invasive, and downright creepy. I cannot even begin to imagine how upsetting and stressful it would be to sit in the waiting room, knowing that not only will your physical body be wide open for all to see, but wondering if they are going find anything else which will prevent you from receiving treatment.

It also may a knee-jerk reaction but all I can think if IVF candidates are required to routinely undergo detailed checks, then who's checking the parents who conceive naturally? The people who in some cases conceive carelessly and thoughtlessly? Or who make reproductive choices as private decisions, and subsequently parent without being subjected to any sort of assessment whatsoever? HFEA's rationale on that point seems to be that once a person requires the intervention of third parties, such as medical staff, then this does put people on a different footing, one more akin to adoption. So really, if ever there was a practice designed to further widen the gulf between the experience of the bountiful uber-fertile and the bitter isolated infertile, this is it.

I'd really, really appreciate comments on this, which may help me to finalise my opinion and articulate my views to HFEA when I come to respond to the questionnaire. I'm also very interested in what goes on in other countries- for example, is there any form of check in the States prior to commencing treatment? If so, how do you feel about that?

21 Comments:

At 7:28 PM, Blogger Orodemniades said...

Y'know, ultimately it doesn't matter. Personally, I believe that Britain is slowly but surely heading down the road to 'if you're not perfect, you're not getting ART'. In a way, infertility is being treated much the same way as being overweight is - it's your fault, you're costing the country too much money, just shut the fuck up and deal with it, loser. Although, of course, if you're fat and infertile it's a double whammy, cause you're too fat to breed. Ha ha!

The difference between Britain and the US is that there's always a clinic willing to treat you - you just have to find it and be able to afford it. Anyway, ask me in a couple of months, after I go home and search for clinics there.

Meh

 
At 7:54 PM, Blogger Toni said...

Ugh...I don't like this at all. They don't ask you these things if you don't have issues...why are they asking if you have an issue? Do they do checks for organ transplants? Or blood donation? I'm guessing not. So sorry you have to go through this.

 
At 8:11 PM, Blogger E. said...

Oooo, this pisses me off but good. It hits me in one of my biggest soapbox areas: nanny-statism. Various forms of this crap come from every political party, right, left, and center. And any increase of government power is always justified on the grounds that "it's for the chhhhiiilllldrrreeeen."

Here's my take (major rant ahead): where does the decision on parenthood belong: with the government? Or with the individual? Yes, individuals can and do make very stupid choices -- but there's a lot of evidence that shows that committees of bureaucrats who know little to nothing about individual circumstances make many more stupid choices. I mean, who are these bureaucrats, anyway? They're the same people the government claims not to trust with personal decisions -- except they happen to have government jobs.

So stupid choices are inevitable. That said, which approach does the most damage? I contend that granting this kind of power to government takes us down the slippery slope another fair piece. What's next -- committees deciding whether or not someone deserves to have heart surgery? How about having to get a license to have children?

Something very similar goes on in China -- is that the model we want to emulate? It's not so far-fetched -- it seems to me that if you're turned down for IVF, that would likely be a strike against you if you subsequently decide adopt. I can easily envision a scenario where IVFers are ruled unfit not because they're unfit, but because some bureaucrat's NHS budget is tight and to make his statistics, he needs to reduce IVF demand. Then, the poor IVF couple goes to adopt and can't, NOT because they're unfit but because the record shows they were ruled unfit for IVF -- all because some self-interested bureaucrat had an incentive to cover his ass. And wham -- the government has effectively done what China does: bar perfectly fit would-be parents from having the family they want.

And yes, on a personal level it does indeed piss me off that we infertiles have to put up with scrutiny and judgement the rabbits of the world don't have to endure...just because we happen to have a medical problem. People who want to adopt face the same problem, and that makes me mad, too. Ugh.

To your question: in the states, I think some clinics require psychological counseling...but lots don't. Thank you for posting this. I'm getting an education.

 
At 8:12 PM, Blogger Suz said...

Hi, Mare -

I did a quick google search on background checks for IVF in US clinics and believe that they only occur in cases of egg donation and surrogacy. I firmly believe that this is the only case where they should be conducted. Mandating any sort of check for IVF couples, as you mentioned, exposes them to a slippery slope where couples could be denied simply based on a social worker's snap judgement. I don't even believe that a criminal records check should be conducted because I don't feel that someone who may have made a mistake in their youth should be penalized for it later in life. I don't feel that those who must seek ART should be held to a different standard than those who reproduce naturally. It seems to me that government resources could be much better employed elsewhere.

 
At 8:25 PM, Blogger Soper said...

There actually is a similar movement in the U.S., which has less credibility behind it than the U.K. argument, I think.

It is all weighted in the parens patriaedoctrine. Yes, the state steps in as "parent" for the child when needed for the welfare of the child. Since the gov't is potentially paying for treatment to get said child in the U.K., I can see a (thin) argument supporting regulation.

But in the U.S., when it is MY money and MY body, why should the gov't stick it's nose in my business WHEN CRACK ADDICTS HAVE THE RIGHT TO HAVE KIDS WITH ABANDON?

It is a tense issue -- do we allow people actual, free reign over their bodies and their lives, or do we allow the gov't to moderate our behavior because SOME people are stupid and make poor choices?

Love having Coffee Talk with Mare. *sigh*

 
At 8:39 PM, Anonymous Anonymous said...

Oh.
My.
God.

It's spreading. Worldwide. The bullshit is spreading.

Thanks for sharing, Mare. Fight the good fight, sister.

Jen/VintageUte

 
At 10:45 PM, Blogger Beaver Girl said...

It occured to me the other day that my clinic never asked for i.d. or anything to prove that dh and I aren't brother and sister or anything. Even the health club made us prove we were married to join as a couple. But whatever. Horrible people will continue to breed naturally. Wonderful people will be screened. Eventually they'll realize the screening is useless.

By the way, Suzy Leather is going to be my new porn name. Just decided. Used to be Donna Matrix.

 
At 11:44 PM, Blogger amyesq said...

It is a tough issue and, I think, one that is harder to grapple with in the UK that in the US. While the US system is certainly not perfect, there is less wiggle room for this type of information gathering, thanks to the Constitution and the Bill of Rights. Both the right to privacy and the right to reproduce (I am not talking here about abortion rights but, rather, the right to be free from forced sterilizations and certain mandatory marriage and reproductive counseling) have been zealously defended throughout the years. I would argue that any law requiring background checks for individuals seeking ART would seriously infringe upon those rights in both areas. The backlash would be huge and that type of case would see the US Supreme Court, where hopefully such legislation would be struck down.
However, since the UK has no codified Bill of Rights, there is less that can be done at a direct level to limit such legislation. Mare, I don't know much about the role public opinion plays in passing new legislation, or whether there are any checks and balances in the system to either limit or do away with such proposed legislation. Do you happen to know?

At the very least, it sounds like a good issue for my law school Moot Court board to take up.

 
At 11:46 PM, Blogger amyesq said...

P.S. Beaver Girl - I was thinking Suzi Leather could be MY new porn name. I mean, shoot, you already have a great one with "Beaver Girl!" :)

 
At 3:38 AM, Blogger twirl said...

Sounds like a road to hell being paved with "good intentions" to me.

 
At 6:14 AM, Blogger DeadBug said...

I can't even comment on this rationally. I find it utterly repugnant. Invasive, irrational, biased...just repugnant.

UGH!

--Bugs

 
At 2:58 PM, Anonymous Anonymous said...

I have so much to say on how much this angers me and how I find it reprehensible that I will limit my comment to this so I don't take up your entire blog with a huge rant.

One more 'agency' just sticking its nose where it doesn't belong and shrugging its shoulders that there's nothing they can do about that crack 'ho because she can reproduce and since reproduction is a bilogical right, the 'agency' in this case has its hands tied. Interesting, when it comes to a crack 'ho it's a biological right, when it comes to me, because I need assistance, it's no longer a right but an invasion of my privacy.

They can all go eff themselves.

Emily

 
At 7:12 PM, Blogger HomeFireBlue said...

I will NEVER comprehend this mindset!

Why should it be so different and difficult for people to get ART or adopt than it is for them to just spit out a kid unassisted? WHY?

For one thing, certainly the grotesque outlay of time, effort and money can be assumed to have winnowed out at least the majority of psychos and weirdos? Am I wrong? What worthless bit of shite who intends to shame and abuse his kid would go to all the trouble? Yeah, I'm gonna get married, fill out tons of paperwork, inject shit into my wifes ass, get groped and tested myself, show up for all the appointments, PLUS lay out the cash just so i can get a little Johnny Jr and step on his head and tie him to his bed?

I doubt it. (BTW - I just used a man as an example, yes women abuse kids too)

And secondly - as everyone else pointed out - why aren't these 'controls' imposed on fertiles??

I, myself, am finally having my family and no one's asked me how much I drink, or for a psychological profile, or a background check, or taken fingerprints. I could have all of mine wrapped up in duct tape in a shed (too young to attend school).

Fuck, I've taken my then 2 year old into his own doctor with bruises on his face and a split lip from overexuberant attempts at being Spider-Man and was NOT ASKED ONE QUESTION.

But they want to judge an infertile woman before she even has a chance to TRY to concieve???

Blue calls BULLSHIT!

-Blue / the thrifty mom blog

 
At 6:58 AM, Blogger akeeyu said...

This is really offensive.

I mean, nobody investigated the DFF (Dumb Fuck Fertile) I know who got OopsPregnant with a crack dealer's baby. It might have been nice if they HAD investigated her, because they would have discovered that said crack dealer was the sole babysitter for her *other* kid. Yeah. Mother of the Year.

But WE should get investigated because our snatches don't work right? It's obscene. Do they investigate other potential parents with physical impairments and/or disabilities? Of course not.

Great. Now I'm all peevish.

 
At 3:09 PM, Blogger Kristin said...

Argh...this crap makes me so angry. I in no way, shape, or form believe the government should be allowed to dictate who can be a parent and who can't. And, that is definitely what they are doing here.

 
At 4:12 PM, Blogger Kath said...

I was repulsed by this and duly told them so.

 
At 10:25 PM, Blogger Karen said...

1984, here we come. Eeeeeeeeeeeeeeeeeeeeeeeeeek. THis scares the shit out of me.

Let's treat those infertiles like second class citizens, since we CAN. What can they say anyway? We're letting them get the chance to conceive, obviously. THey should be thankful to us.

Karen/naked ovary

 
At 12:19 AM, Anonymous Anonymous said...

WTF?!?!?!?!?
OK, fine, then every couple who intends to conceive a child without ART should ALSO have a background check. The bastards, oh the bastards.
It is appalling for many of the reasons stated above, but it is also stupid. Clearly shows they have no idea of the inner strength required to go through ART. Heck, give me an infertility treatment survivor for a parent any day. They are people willing to put themselves through hell to have a child. They will be questioned at every turn about why they "want a mini-you" or "why don't you just adopt." They will have to endure isoloation from family and friends, or expose themselves to cruel or ignorant comments. They will test their relationship with their partner to its limits. They will have a crisis of their soul, their faith, their life.
Anyone who is willing to go through that because of love for another human being and longing for a child with them doesn't need a background check. They need a medal.
Menita
(lifesjestbook.typepad.com)

 
At 7:38 PM, Blogger LEB said...

de-lurking:

It is so nice (not the best word) to see that I'm not the only one spitting nails about this. Fertility treatment in the UK is a mess - both as a result of HFEA (bunch of wankers) and the Human Fertilisation & Embryology Bill which have succeeded in keeping public attitudes to infertility treatment and the infertile firmly in the dark ages ("it is just so *unnatural*" - morons).

The whole welfare of the child principle was shoe-horned into the bill by the same people who wanted to make it "unlawful to transfer an embryo into the womb of an unmarried woman". More wankers. It is a morality issue thinly disguised as a child protection issue and my only conclusion is that 'they' believe that the infertile are intrinsically less fit to parent than the fertile and present a greater risk to their future children than fertile people do to theirs.

I fucking hate the bastards.

 
At 8:05 PM, Blogger Barren Mare said...

Thanks everyone for all your comments, and also for the reality check that I am not the only one who finds the whole idea of checks on infertile couples to be kicking us when we're down.

Amy asked an interesting question about public opinion and legislation. In most cases, at least in Scotland, Bills and the accompanying policy require to have some form of consultation in draft before going through the legislative procedure. However, whether or not the policy changes in response to what people say at the consultation depends on how much of a political hot potato it is. There can also be political pressure as the bill goes through Parliament, but it's pretty hard to do anything once it gets past a certain stage.

The difficulty with HFEA and with these proposals is that they are not making changes to the law. We're stuck with the current crappy law, which as LEB has a "welfare of the child provision" shoe-horned into it. In other words, the current law requires SOME form of check. What HFEA are now asking is how stringent that check should be in terms of the guidance issues to clinics. My response is going to be that it should be as minimal as possible. But really, in an ideal world, as LEB says, we'd have a new law, one with some sense and not some bullshit practice designed to second guess the worthiness and suitablility of people unfortunate enough to need ART.

New legislation might be coming our way around 2008. Watch this space.

 
At 1:37 PM, Anonymous Anonymous said...

I'm really glad you raised this! The HFEA already regulates treatments to a degree that is painful and difficult for some couples. In my case it's because I'm a lesbian using a known donor, a close friend. It is made much harder to do this than if we were married, or even if I was a single woman using anonymous donor. We have had to jump through numerous hoops, all emotionally exhausting. I fear that more regulation will too easily be used against 'unconventional' families. For example, the shortage in donor sperm is already hitting lesbians hard because the clinics are asking donors to decide whether or not their sperm is used for single or lesbian women (no prizes for guessing what most of them say). The compulsory counselling for everyone goign through treatment readily becomes a test of suitability. The reality is the HFEA cannot act like social workers in the case of adoption, and they should not be trying to. Thank you! Tell them! Londongrrl.

 

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