HEAL UoS

Archive for September, 2011|Monthly archive page

Donor matching: (not) in the red?

In 2011, Genetics, Reproduction on September 27, 2011 at 10:39 am

News broke last week that red-haired sperm donors were being turned away by Cryos, a Danish sperm bank, due to their currently high ‘stock levels’ and lower demand than for donors with other characteristics. The Telegraph quoted Cryos’ director, Oleu Schou, as stating that Ireland provided ‘the only reliable demand’ for red-haired donors. In contrast, an article in the Irish Times indicated that Mr Schou had stated that Ireland was actually in the top 3 of countries with the highest demand for red-haired donors, placed behind Denmark and Germany.

But, irrespective of whether or not Ireland is the place in Europe where red-haired donors are especially in demand, the story draws attention to a long-established approach to donor conception; that is, ‘donor matching’, where the characteristics of donors are (often, but  not always) matched to the characteristics of the intending parent(s). Whilst there are no guarantees that using the gametes from a donor with similar characteristics will necessarily result in a child that will physically ‘match’ the intending parent(s), which clinics should discuss with patients; difficulties can arise where gamete donors with the desired characteristics cannot be found – the example given in the Telegraph article is of the scarcity of Indian sperm donors.

While the practice of donor matching began in the context of the provision of donor sperm to married couples, in order that they might pass as ‘the family’ at a time where secrecy and anonymity in this field were both promoted, the desirability of donor matching is not restricted to those in heterosexual relationships – Caroline Jones has previously explored the significance of implied cultural and racial bio-genetic links in families with two mothers, drawing on small scale empricial research – see Sexualities (2005) Vol.8(2): 221-237.

 

Other Links

http://www.telegraph.co.uk/news/worldnews/europe/denmark/8768598/Sperm-bank-turns-down-redheads.html

http://www.bionews.org.uk/page_107061.asp

http://www.parentpages.co.uk/family-2/families/no-sex-please-were-danish linking to: http://www.dailymail.co.uk/news/article-2038499/Sperm-bank-Cryos-turns-redheads-No-sex-Danish.html

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This week’s meeting!

In 2011, Capacity, Meetings, Mental Health on September 26, 2011 at 8:45 am

On Wednesday 28 September, we’re meeting at 4pm in room 2007/4 (Law, Highfield) to discuss the ‘Adults With Incapacity (Scotland) Act 2000 – Consultation On Certification Of Incapacity For Medical Treatment, with a view to formulating and submitting a response on behalf of HEAL.

This consultation seeks views on four issues on Adults with Incapacity (Scotland) Act 2000 Part 5 in relation to medical treatment. The issues are:  1.widening the range of institutions which can offer training; 2.whether dentists should be required to undertake training for this purpose; 3.whether multiple section 47 medical treatment certificates should be required in some circumstances; 4.and whether other medical practitioners not specified should be enabled to certify incapacity for medical treatment.

Reprieve for UK Donor Link

In Genetics, News, Reproduction on September 23, 2011 at 8:00 am

UK Donor Link, the voluntary contact register set up for persons conceived with donor gametes, and those who had donated gametes pre-August 1991, faced closure due to a lack of funding, but this month was granted a temporary reprieve by the Government. It is now secure to continue its work until March 2012, and further funding options will be explored in the interim period. 

UK Donor Link was established in 2004 to enable donor conceived individuals, and gamete donors, and half-siblings, to exchange information and – where parties wish to – to have contact with one another. This is only for adults, who were conceived or who donated gametes pre August 1991 (when the HFE Authority was established under the auspices of the Human Fertilisation and Embryology Act 1990).

The potential impact of the closure of UK Donor Link was highlighted by the screening of the BBC documentary ‘Donor Mum: the children I’ve never met’ (30 August) – as at a crucial time of increased public awareness of their activities, due to the lack of funding they could not accept any new registrations following the programme, leaving donors and donor conceived persons without a formal avenue to exchange information and/or to contact each other, where desired. Fortunately registrations were re-opened on 15 September 2011, but the future of the organisation arguably remains fragile until a more permanent basis of funding can be established.

 

 

 

Life, Death & Law Making

In Death and dying, Testing project on September 22, 2011 at 2:04 pm

Now available on-line before the published issue: Jonathan Montgomery, ‘Guarding the gates of St. Peter: life, death and law-making’, Legal Studies journal.

Abstract   In 2009 the legislature, judges and Director of Public Prosecutions (DPP) each turned their attention to issues around assisted suicide. The legislature decided not to change the law. The judges decided the existing law was insufficiently clear and required the Director to clarify it. The Director flirted with reforming the law, but then drew back from such a legislative role. His published prosecution policy has been considered as a contribution to the regulation of death and dying, and as such has been found wanting. However, considered in the context of the proper roles of Parliament, courts and prosecutors, and seen as an exercise in constitutional restraint, the Director’s approach should be appraised rather differently. From this perspective, the decision of the Judicial Committee of the House of Lords in R (Purdy) v DPP1 raises significant concerns for the legitimacy of decision making in the contested moral issues that arise in healthcare ethics. In our democracy, courts should be wary of usurping legislative authority in areas where the Parliamentary position is clear. They should be reluctant to take sides in the protracted war over access to a ‘good death’.

Case of the week: September 22, 2000

In Case of the week, Cases 2000, Death and dying on September 19, 2011 at 8:46 am

Re A (Children) EWCA Civ, Sept 22, 2000.  

The twins, named Jodie and Mary in the reports in order to preserve their anonymity, were born on August 8, 2000 in Manchester, after their parents travelled to the UK from Gozo, Malta (as it was known they were expecting conjoined twins and local resources were limited). They were joined at the lower abdomen/pelvis and – crucially – shared an aorta. Whilst Jodie was reported to have an ‘anatomically normal brain, heart, lungs and liver’, showing normal reactions to stimuli etc [para 6, CA transcript, below], Mary was reported to have a ‘primitive brain’, poorly functioning heart, and an absence of ‘functioning lung tissue’ [at 7], and was therefore dependent on Jodie for survival. The surgical team and hospital were in favour of surgical separation in order to maximise the chances of Jodie’s survival; the pressure placed on her heart in supporting both her and Mary was, according to expert evidence, highly likely to lead to the premature deaths of both children, whereas separation might enable Jodie to survive, albeit it that it would concurrently lead to Mary’s immediate death.

The parents disagreed, noting the influence of their devout religious faith (Roman Catholic) that it should be ‘God’s will’ to decide whether or not either or both of the children should survive. The hospital sought, and was granted, a declaration that the operation might go ahead – it was granted by Johnson J on 25 August 2000. The parents’ appeal was, a month later, dismissed by a unanimous Court of Appeal panel, comprised of Ward LJ, Brooke LJ and Robert Walker LJ. Unsurprisingly this case raised a plethora of legal and ethical/moral dilemmas for the court including – but not exhaustively – the role of parents in decision-making; questions over comparative ‘quality of life’ issues; welfare/best interests; murder, intention & the doctrine of necessity (in defence); role of religion; relevant aspects and intersections of Family Law and Criminal Law; & the sanctity of life (including some comments on the (then) forthcoming Human Rights Act 1998. However, the unanimity of the agreed outcome masks the divergent routes by which the individual judges arrived at their decisions.

For those who wish to read further, the case transcript is freely available to all via  BAILII:  http://www.bailii.org/ew/cases/EWCA/Civ/2000/254.html. Permission to appeal to the House of Lords was granted, but the parents chose not to appeal – nor was a direct application to Strasbourg (ie an alternative route to challenge the decision) undertaken.

Links

Coverage of the CA decision: http://news.bbc.co.uk/1/hi/health/937586.stm  

http://www.guardian.co.uk/uk/2000/sep/28/4?INTCMP=ILCNETTXT3487

Coverage of reactions to the decision: http://news.bbc.co.uk/1/hi/health/937377.stm

This decision is also reported at [2001] Fam 147, [2000] 4 All ER 961, [2001] 2 WLR 480, [2000] 3 FCR 577, [2001] 1 FLR 1, [2001] Fam Law 18, 57 BMLR 1; but access to these resources may be restricted (subscription required).

Storage problems? Legal principles on the storage of human tissue

In 2011, Human tissue on September 14, 2011 at 7:00 am

One of our HEAL UoS colleagues, Dr Remi Nwabueze, spoke last Friday, 9 September, at the inaugural symposium on ‘Legal principles underlying the law on storage of human tissue’, a two-year Oxford-Melbourne Research Partnership set up to explore how the storage and use of human body parts and tissue should be regulated. Remi’s paper was entitled: ‘Philosophical perspectives on the concept of property and its applicability to human tissue’, and builds on some of his earlier work in this field, including his monograph on Biotechnology and the Challenge of Property.

This time last month: Tom Condliff & his gastric band request

In 2011, NHS, Testing project on September 12, 2011 at 8:57 am

On 15 August 2011, the BBC reported that Tom Condliff’s renewed request for a ‘gastric band’ had been granted by North Staffs PCT. Mr Condliff had previously requested this surgery, but the PCT in question had turned down his request as his BMI (body mass index) fell below the required threshold set out in the relevant policy – his was reported to be 43, whereas the policy in question required a minimum BMI of 50 before this operation would be routinely provided (among other conditions, including the clinicians indicating it was necessary, and the consent of the patient in question).

Part of the PCT’s policy excluded consideration of social factors, meaning that non-medical/non-clinical matters could not be used in consideration of the ‘exceptionality’ of a given case. The PCT refused his ‘individual funding request’ (IFR), which Mr Condliff had made based on the ‘exceptional’ circumstances of his case; and thereafter he sought judicial review of the PCT’s decision.

His application – based on arguments around the applicability of Article 8 of the Human Rights Act 1998 (right to respect for private and family life), together with section 6 of the same Act (whereby it is unlawful for a public authority to act in a way which is incompatible with a Convention right) – failed in both the High Court on April 7, 2011, and in the Court of Appeal on July 27, 2011. 

He submitted a new IFR in August 2011, and it was reported (by the BBC, above) that he was informed soon after that the request and additional medical evidence brought him within the exceptional category as per the PCT’s policy.

Other links:

Guardian: http://www.guardian.co.uk/society/2011/jul/31/tom-condliff-gastric-band-appeal?INTCMP=SRCH

Telegraph: http://www.telegraph.co.uk/health/healthnews/8703065/NHS-funds-weight-surgery-for-obese-man-despite-court-loss.html

Mills and Reeve (the N Staffs PCT’s solicitors) briefing on CA decision (27/07/11): http://www.mills-reeve.com/files/Publication/34b1ea56-ce83-4b47-a714-b7e2255cecd9/Preview/PublicationAttachment/a56af14a-d151-488f-96d9-bb64ab85d749/R_(Condliff)vNorth_Staffordshire_PCT_26_July%20_2011.pdf

Consent and confidentiality in genetics

In 2011, Genetics, News on September 8, 2011 at 8:05 pm

The Joint Committee on Clinical Genetics has recently published an updated document Consent and confidentiality in clinical genetic practice: Guidance on genetic testing and sharing genetic information (http://www.rcplondon.ac.uk/sites/default/files/consent_and_confidentiality_2011.pdf)

The document was substantially rewritten from the previous edition of 2006 by HEAL member Professor Anneke Lucassen and Alison Hall from the PHG Foundation (see http://www.phgfoundation.org/)

It was a privilege to contribute a foreword to the document, which provides guidance on acceptable practice, illustrates it with case studies and contains some useful flow charts to assist clinicians in making decisions.

Reliable information is the keystone to good practice in all healthcare but the distinguishing feature in clinical genetics is that much of this information affects not only the individual patient but also other family members. The normal principles of confidentiality and data protection are not so straightforward in this context. Clinical genetics services will often want to use the information they gather when providing advice to one person to assist another family member but may be unsure whether this is acceptable.

Where a patient agrees to confidential information about them being used in this way, there is little cause for concern. It may even be appropriate to encourage those who are hesitant to permit this to be altruistic in the expression of their ‘genetic solidarity’ with their relatives. Consideration also needs to be given to whether there are circumstances in which it may be legitimate to use such information even without consent. This will not necessarily mean disclosing it to anyone as it may be helpful merely to use it when assessing the risks of genetic disease to another family member.

Article 8 of the European Convention on Human Rights recognises that people’s right to privacy may be outweighed by the rights and freedoms of others, provided always that it is proportional to do so. This is a difficult balancing act and the new guidance aims to help professionals strike the appropriate balance.

It is an important document that deserves to be well read.

Jonathan Montgomery is Chair of the Human Genetics Commission but this post represents a personal view, not the position of the Commission and is based on his Foreword to the newly published document.

Looking back 10 years: NHS reform!

In 2001, NHS on September 5, 2011 at 8:35 am

Originally announced in July 2001 (foreword by Nigel Crisp), in the Shifting the Balance of Power Within the NHS: Securing Delivery paper, the Department of Health’s NHS Plan was ‘about improvements for patients and the public’, by – among other things – developing the Primary Care Trusts (PCTs), the creation of  ‘fewer, larger and more strategic health authorities’ and ‘re-focusing the Dept. of Health ‘on doing only those things that only it can do.’

Come September 2001 the Dept. of Health issued consultation documents on ‘Modernising the NHS’ through restructuring, including our ‘local’ consultation on Modernising the NHS: Shifting the Balance of Power in the South East, on the proposals for a new Health Authority for Hampshire and the Isle of Wight.

 

NB in the interests of transparency, we should probably declare at this juncture that Jonathan Montgomery is the current Chair of Hampshire Primary Care Trust.

Looking back five years: egg donation for research

In 2006, Reproduction on September 1, 2011 at 3:01 am

In September 2006 the Human Fertilisation and Embryology Authority launched a consultation, ‘Donating eggs for research: safeguarding donors’, asking whether or not egg donation for research purposes should be permissible, and if so, how could donors be best protected?

For a brief overview of the consultation, see this Bionews commentary: http://www.bionews.org.uk/page_12842.asp; and for a summary of the BMA’s Medical Ethics Committee’s views, see Veronica English’s follow up piece: http://www.bionews.org.uk/page_37900.asp.

In February 2007, the HFEA announced its decision to permit ‘altruistic’ donation for research purposes – see the Report.