couple of articles i read this weekend... the privacy issue is kind of worrying really... especially what with the apparent potential for intimidation/bullying...
An abortion ruling that puts the privacy of women at risk | Kate Smurthwaite | Comment is free | guardian.co.uk
An abortion ruling that puts the privacy of women at risk
The decision to publish individual figures on late terminations will needlessly expose vulnerable women to public scrutiny
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Kate Smurthwaite
guardian.co.uk, Friday 22 April 2011 10.30 BST
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Following a recent ruling at the information tribunal that will allow late abortion figures to be released, vulnerable bereaved parents and their clinicians are being put at risk of being doorstepped by tabloid journalists, or forced into lengthy and expensive legal battles.
The Department of Health had argued that while data on the medical grounds for termination of pregnancies after 24 weeks should be provided, it was in the interest of patient and practitioner confidentiality to aggregate conditions affecting 10 or less cases. More detailed breakdowns would be made available, aggregated over five or 10 years.
Importantly, the challenge to the DH's stance does not come from a neutral academic research body in need of clearer data for medical research. It comes from the ProLife Alliance, an overtly anti-choice campaign group with a clear and stated agenda to completely end the provision of abortion services in the UK. Combined with information already in the public domain, the details released could help identify women having late-term abortions and make them vulnerable to harassment by anti-abortion campaigners and tabloid journalists. This is a travesty of justice.
Harriet S (not her real name), a woman in her 30s, told me: "You don't get to six or seven months of pregnancy with a child you're feeling kicking and then decide you're going to terminate for trivial reasons. There are extremely serious conditions, many of which are terminal. In my case, it wasn't a question of if the baby survived but of when it died." It's obvious how much her late-term abortion has affected her when she adds, "We had painted the nursery."
I've changed Harriet's name, of course, to allow her to tell her story without risk of being identified. But the ruling means that she, others like her and the clinicians who support these women could have their identities exposed.
In 2009, there were 136 abortions in the UK among women who had passed 24 weeks of pregnancy. Numbers are fairly consistent – around the 130 mark each year. The range of conditions involved is very wide, predominantly involving a variety of brain and cardiac abnormalities; most common foetal abnormalities, such as Down's syndrome, are typically revealed earlier in pregnancy at the 12 or 20-week scan. As such, many conditions will be listed with only one or two cases a year, effectively providing one individual woman's medical record.
Single tick-box categories fail to provide a real understanding of cases anyway. Many conditions may interact with other medical problems or known genetic issues within a family. Others exist on a spectrum, or can be symptoms of more serious underlying conditions.
When similar information was leaked in 2001, a court case was brought by Church of England vicar Joanna Jepson against doctors accused of performing a late termination on grounds of a cleft lip and palate. No mention was made of the fact that the condition exists across a wide range of severity and can indicate an underlying genetic problem. The details of the case were never made public but it was immediately thrown out of court on the grounds of "no case to answer".
In the wake of the Jepson case, some clinics felt compelled to establish ethics committees, leaving parents reeling from bad news waiting up to two weeks for permission to proceed with a termination. Ultimately, we are creating a situation where clinicians feel they have to justify their decisions on a case-by-case basis to the national media. There is also concern that reduced confidentiality will make women more reluctant to participate in medical research that could lead to earlier diagnosis and better preventative and therapeutic treatment options for serious medical conditions.
To date, the ProLife Alliance's tactics have included sending plastic models of foetuses to MPs, operating "helplines" intended to mislead women about the risks of abortion and holding vigils outside family-planning centres. It seems clear that any opportunity to launch a legal challenge on any aspect of abortion or to kick up a media storm will be seized upon.
Jane Fisher is the director of Antenatal Results and Choices (ARC), the UK's only non-directive organisation supporting women who are given diagnoses of foetal abnormality. She tells me that:
"ARC has regular contact with women who are given the devastating news late in pregnancy that their baby has a potentially lethal or severely disabling condition. Reeling from the shock of this news they face the life-changing decision about whether to continue or end their wanted pregnancy. It is a very traumatic time and they need to be enabled to make the decision that's right for them with an absolute guarantee of privacy and confidentiality. These are also challenging and distressing situations for clinicians. All parties involved in such harrowing circumstances need our trust, support and compassion, rather than suspicion or judgement."
This ruling will do nothing to advance the wellbeing of those involved in decisions around late termination. All it will do is leave them paranoid that whatever normality they've managed to find after the loss of a child could suddenly be ripped away.
) so she didn't know what to do. She went to Planned Parenthood, and basically given her situation they told her to abort abort abort. They offered no alternatives, and they basically said that was her only viable option.
