Report on Donor Conception

source: http://www.nuffieldbioethics.org

A special Working Party of the Nuffield Councilk on Bioethics has published its report "Donor conception: ethical aspects of information sharing" which considers the interests of people affected by donor conception and makes recommendations about what can be done to support, encourage and empower those making decisions about the sharing of information.

Here is an extract from the introduction:

The task for this Working Party has been to consider questions of information sharing in practices of donor conception in the UK. Its primary focus has thus been on issues of privacy, openness, and access to information, and the implications of each of these for the individuals, families and groups affected by donor conception. While its remit was not to investigate the ethics of donor conception  per se, the Working Party nevertheless received evidence of a wide range of views and attitudes towards the use of donated gametes as a means of creating families. At one end of the spectrum, some people, including some donor-conceived adults, believe that donor conception should not be allowed at all. Both this view, and the opposing one that donor conception is a legitimate means of creating a family and of having children of  'one's own', hinge on the relative significance placed on biological or 'blood' connection between parents and  their children. This issue of the significance of biological connection in family relationships, and in the identity of the individual, has also proved to be central to questions about whether donor-conceived people should always be informed about the means of their conception, how much information about their donor they should be able to obtain, and whether they should be able to find out the identity of their donors, with the possibility of such identifying information leading to contact.

References to 'disclosure' in the context of donor conception tend to conflate two separate issues: 'openness' by parents about the use of donor gametes in conception (donor-conceived people knowing about the circumstances in which they were conceived), and access to information (identifying or non-identifying) about the particular donor. It is, however, very important that these two issues should be distinguished. It is possible for a parent to be open with their child in the context of anonymous donation. It is not, however, possible for a donor-conceived person to exercise any entitlement to information about their donor in the  absence of information about the circumstances of their conception. It should also be noted that, in contemporary social life in the UK,  'openness' has acquired positive connotations and is axiomatically thought to be desirable. The Working Party has been compelled to think carefully about the language it uses in order to convey not only the complexity of the issues raised in sharing information in the context of donor conception, but also the diversity of views and opinions on its implications.

These issues have been contentious for many years, as the Working Party's factfinding meetings and responses to its call for evidence have illustrated. The Working Party is acutely aware of how many, potentially competing, interests are at stake ± and of how much these issues matter to those whose lives are affected by donor conception. Because of the variety and complexity of these views, the Council, in establishing this enquiry, sought to provide a forum where  all voices could be heard; and it was felt that this would best be enabled through consultation rather than seeking to represent this vast spectrum of opinion on the Working Party itself.  Input from as wide a range of interested and concerned individuals and organisations as possible was thus sought through an open call for evidence, an online survey, a series of face-to-face meetings, and external review of the draft report by diverse stakeholders. [...]

As noted above, the Working Party has been primarily concerned with the UK. It should be noted however that there are other, and different, regulatory and ethical regimes across the world which inevitably impact upon the UK. Not only might ethnic ally diverse populations within the UK be informed by cultural and ethical imperatives in their countries of origin, but people regularly opt to travel overseas for fertility treatment, and it is also possible to import gametes to treatment in a UK clinic. In addition, UK regulatory frameworks do not cover the  'informal' arrangements people make outside the clinic to donate and acquire sperm both in the UK and abroad. The Working Party is aware that there are distinctive national IVF and donor conception cultures that are emerging and changing, [reference ommitted]  and that this needs to be kept in mind in any discussion of donor conception and information sharing whose primary focus is the present situation in the UK.

 Additionally, you can find the quick guide to the report here.

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See a blog entry by Dr Rhona Knight on Nuff' said who, via an extract from the foreword of the report, reflects on the creation of the report and outlines some of its main findings.

Ethics of Vaccination in Humanitarian Crisis

In the April issue of the Bulletin of the World Health Organisation (Vol. 91 No. 4) Keymanthri Moodley et al. published the article "Ethical considerations for vaccination programmes in acute humanitarian emergencies". The analysis deals with ethical questions of vaccination raised by humanitarian crisis through considering a couple of key issues: beneficience and human rights, non-maleficence, distributive and procedural justice, informed consent and, finally, research.

Here is the abstract:

Humanitarian emergencies result in a breakdown of critical health-care services and often make vulnerable communities dependent on external agencies for care. In resource-constrained settings, this may occur against a backdrop of extreme poverty, malnutrition, insecurity, low literacy and poor infrastructure. Under these circumstances, providing food, water and shelter and limiting communicable disease outbreaks become primary concerns. Where effective and safe vaccines are available to mitigate the risk of disease outbreaks, their potential deployment is a key consideration in meeting emergency health needs. Ethical considerations are crucial when deciding on vaccine deployment. Allocation of vaccines in short supply, target groups, delivery strategies, surveillance and research during acute humanitarian emergencies all involve ethical considerations that often arise from the tension between individual and common good. The authors lay out the ethical issues that policy-makers need to bear in mind when considering the deployment of mass vaccination during humanitarian emergencies, including beneficence (duty of care and the rule of rescue), non-maleficence, autonomy and consent, and distributive and procedural justice.

Emerging Debate on Abortion: Reply to G. Puppinck on EJIL: Talk!

Hopefully we can see an emerging debate on matters in relation with abortion on the blog of the European Journal of International Law (EJIL: Talk!).

As I earlier mentioned in this blog Gregor Puppinck, director of European Center for Law and Justice wrote a comment on abortion on demand and the case-law of the ECtHR. Mr. Puppinck expressed his opinion on matters related to abortion in a conservative "pro life" fashion which entails the disregard towards women's right to rospect of private life, the superseding interests of the embryo or the foetus and - what I called a terrifying solution - the consideration of the interest of the prospective father or grandfather. The author justified his reasoning by some kind of grateful tolerance on behalf of the Court towards abortion.

The response to the above mentioned opinion was published on EJIL: Talk!last week by three PhD Candidates from the Durham University Law School. Rumyana Grozdanova, Alice Panepinto and Konstantina Tzouvala call for a more sophisticated and nuanced approach to abortion in their post.

The authorsadmit that - even though there cannot be found a right to abortion within its case-law - the ECtHR "has systematically been pressing more conservative Member-States to respect their own legislation and relax the absolute prohibition of abortion under certain circumstances". They call for a holistic approach taking into accont not only the decisions of the Court but the ruling of the domestic courts as well. Relying on both domestic and ECtHR case-law they conclude that the Court does not impose "new or expanded obligations" upon Member-Statea, but rather re-affirms "obligations and rights protections which already form part of domestic legislation".

The authors also address the issue of the rights and interests of the father. They recall the decision of the European commission of Human Righta in H. v. Norway (Applicantion no. 17004/90) in which the Commission declared that the rights of the prospective mother shall be taken into account in the first place - as she is "the person primarily concerned by the pregnancy and its continuation or termination" - when assessing the rights of the potential father. A fact that was not mentioned in Mr. Puppuinck's post.

The overall conclusion of the post is as follows:

In the context of the abortion debate, it is crucial to appreciate the nuanced and comprehensive jurisprudence of the European Court taken as a whole and note the Court’s consistent efforts – if not quite yet successes – in taking into account domestically sensitive issues while balancing the rights afforded to all under the ECHR. While the Court has refrained from recognising a right to abortion under the ECtHR [...], it has at least sought to provide guidance on this issue and reaffirm rights currently existent in domestic legislation where these rights have not received effective implementation. (emphasis added)

ECtHR published updated factsheets

The Court has published updated factsheets on its website. Some of its latest judgments, such as Csoma v. Romania, P. and S. v. Poland, N.B. v. Slovakia and I.G. and Others v. Slovakia were included into the dokcuments.

For more information see:

- Reproductive rights

- Health

- Right to life

When a health carer becomes a torturer

On the 5th of March 2013 Juan E. Méndez, UN Special Rapporteur on torture called for an international debate on abuses related to health-care constituting torture or cruel, inhuman or degrading treatment or punishment.For this occasion the Special Rapporteur published his report deining several areas where torture may occure within the health-care settings.

Here is the summary:

The  present  report  focuses  on  certain  forms  of  abuses  in  health-care  settings  that may cross  a threshold  of  mistreatment  that  is  tantamount  to torture  or cruel,  inhuman or degrading  treatment  or punishment. It  identifies  the  policies  that  promote  these  practices and existing protection gaps.

By  illustrating  some  of  these  abusive  practices  in  health-care  settings,  the  report sheds light on often undetected forms of abusive practices that occur under the auspices of health-care policies, and emphasizes how certain treatments run afoul of the prohibition on torture  and  ill-treatment.  It identifies the scope of State's obligations to regulate, control and supervise  health-care  practices  with  a  view  to  preventing mistreatment  under  any pretext.

The  Special  Rapporteur  examines  a  number  of  the  abusive  practices  commonly reported  in health-care  settings  and  describes  how  the  torture  and  ill-treatment framework applies  in  this context. The  examples  of  torture  and  ill-treatment  in  health settings discussed likely represent a small fraction of this global problem.

What is of particular interest is that the Special Rapporteur makes express reference to judgments of the ECtHR e.g. R.R. v. Poland, P. and S. v. Poland and V.C. v. Slovakia an other relevant decisions of the Court.

Working Document on decesion-making process regarding medical treatment in end-of-life situations

Committee on Bioethics of the CoE launched public consultation on the Working Document on decesion-making process regarding medical treatment in end-of-life situations "to elicit comments, in particular from the sectors directly concerned (such as patients, physicians, other carers, families, bodies which/persons who may be involved in the decision-making-process regarding medical treatment in end of life)".


The scope of the Working Document focuses on end-of-life decision such as refusal or withdrawal of medical treament with due regard to previously expressed wishes. Euthanasia and assisted suicide is expressly excluded.

The Working Document consists of three main parts. The first deals with the ethical and legal frames related to the decision-maing process, namely the principles of autonomy, beneficence and non-maleficence and justice (under the name of equitable access to helath care as incorporated into Article 3 of the Convention on Human Rights and Biomedicine).

The second part identifies the parties involved in the decision-maikng process and highlights some of their role regarding the process. These parties are renging from the patient him/herself with the disctiction of being competent or not, through legal representatives, power of attorneys, surrogates and family members to the carers (doctor and the medical team).

Finally, the Working Document draws up the framework of the decision-making process regarding end-of-life situations and analyses the prossible roles of the parties involved and some technical and procedural aspects.

Article on "abortion on demand" and the case-law of the Court

from www.guardian.co.uk

Grégor Puppinck, director of the European Center for Law and Justice has published a guest article on EJIL: Talk! on ECtHR case-law concenring "abortion on demand". "The purpose of this article is firstly to identify the rationale of the Court on the matter of abortion, and secondly to observe how it applies to the vast majority of abortions practiced, i.e. “abortion on demand”, also called on request:  abortions that are not justified by a matter of health, life or rape, but by the free will of the woman." The article raises two main concerns of which I would like to reflect to:

Firstly, the author correctly emphasises - referring to A, B and C v. Ireland - that "States can allow it for the sake of competing rights guaranteed by the Convention". However he fails to recognise what the Court really said, namely that

there is indeed a consensus amongst a substantial majority of the Contracting States of the Council of Europe towards allowing abortion and that most Contracting Parties have in their legislation resolved the conflicting rights of the foetus and the mother in favour of greater access to abortion. [P. and S. v. Poland, 57375/08, § 97, 30 October 2012]

I think this is importan as Puppinck justifies his reasoning by some kind of grateful tolerance on behalf of the Court towards abortion. But this is not the case, the ECtHR only recognised the european consensus which shall be taken into account as a development within the legislation of the Member States of the CoE. This is not the grace of the Court since it cannot rule - ans this was the case of the former abortion judgments when it rejected to recognise some basic access rights to abortion services - against the will of the majority of the state.There shall also be reference to the judgment in Costa and Pavan v. Italy where the Court expressly emphasised the difference between a born child - as bearer of rights - and the unborn foetus or embryo. It stated as follows:

La Cour n’est pas convaincue par ces arguments. Tout en soulignant que la notion d’« enfant » ne saurait être assimilée à celle d’« embryon », elle ne voit pas comment la protection des intérêts évoqués par le Gouvernement se concilie avec la possibilité ouverte aux requérants de procéder à un avortement thérapeutique lorsqu’il s’avère que le fœtus est malade, compte tenu notamment des conséquences que cela comporte tant pour le fœtus, dont le développement est évidemment bien plus avancé que celui d’un embryon, que pour le couple de parents, notamment pour la femme [...]. [Costa and Pavan v. Italy, no. 54270/10, § 62, 28 August 2012]

Secondly, the author suggests a very terrifying solution for opposing abortion:

Possibly, one day a father or grand-parent of an unborn child will complain before the Court and succeed to save the life of their child. All that such a father or grandparent has to do is to fax a letter to the Court under article 39 of the Rules of the Court, requesting it to take urgent and interim measures in order to avoid the realization of a serious and imminent risk of breach of a fundamental right. All they have to do is to request that the rights to life (art. 2) and to physical integrity and dignity (art. 3) of their unborn child or grand-child be preserved, and that their right to family life (art. 8) be protected. The relatives of the unborn child could successfully obtain from the Court an order to suspend the procedure of abortion, if they demonstrate that this abortion is not justified by a proportionate motives guaranteed by the Convention; they may also inform the Court that they are ready to rear the child. This procedure has never been used yet to stop an abortion, but it could be an effective way to save lives. It would be in continuity with the original meaning of the Convention and with the Court’s own case-law.

The mentioned possibility envisages a very cruel and severe interference with the right to respect of private life of the pregnant woman, and - furthermore - represent a clearly sexist opinion towards reproductive rights of women.