IAB2016 Reflections: Emilia Niemiec

By Emilia Niemic

The session ‘Trends in Bioethics’ was one that I enjoyed most. Dr Tenzin Wangmo presented research revealing that the number of articles presenting empirical research in bioethics journals has been increasing in recent years. The following talk given by Dr Jonathan Ives outlined the problems relating to combining empirical and normative analysis of empirical research in bioethics. I find these issues important to recognize, investigate and discuss, especially as some empirical research may have implications relevant to policy-making.

IAB2016 Reflections: Dunja Begović

By Dunja Begović

Part of a series of blog posts from the IAB 2016 Mason Institute Scholarship Winners.

Trying to answer what I enjoyed most about attending IAB 2016 in Edinburgh, I realised it would be difficult to single out any particular talk or session. So many themes were covered by participants from various countries and professional fields during the three days, that I can only regret not having the chance to hear more. Therefore I would like to focus on an aspect of the conference that was most significant to me personally, as a student currently between finishing a Master’s degree and beginning a PhD: the sessions and presentations aimed at early career researchers.

IAB2016 Reflections: Sarah McNeill

By Sarah McNeill

Part of a series of blog posts from the IAB 2016 Mason Institute Scholarship Winners.

Is my brand more ‘Life Water’ or ‘Highland Springs’? Should I spend more time networking or publishing? What makes a great presentation? Do I say ‘yes’ to all things or better that I close the door on some opportunities in order to do well at those things already on my plate? These questions and more were contemplated during the series of Early Career Researcher events at IAB2016.

The Embryo-shaped Elephant in the Room

By Catriona McMillan

Recent scientific research published in Nature and Nature Cell Biology has revealed that researchers have been able to keep in vitro ‘embryos’ alive for 13 days.

This has produced an explosion of commentaries[1], calls for action and expressions of concern regarding the 14-day rule for research on human embryos (contained in s3(3)(a) of the Human Fertilisation and Embryology Act 1990 (as amended)).

To provide some background, this rule was put in place as a statutory embodiment of the ‘compromise position’ adopted by the UK government as a result of the recommendations of the 1984 Warnock Report. In short the conclusion of the Warnock Committee was: yes, we can carry out research on ‘embryos’, but they must be destroyed after 14 days. At the time of the enactment of the original Act, 26 years ago, it was decided that 14 days was an appropriate compromise as, at this stage in early development, the primitive streak[2] begins to form, and the ‘embryo’ can no longer split into twins after this stage. It was thus felt that this stage was morally significant, re-enforced by the belief that this was the earliest known moment when the central nervous system was likely to have formed to a meaningful extent.

Liminal Spaces Project: Report on First Advisory Board Meeting

By Annie Sorbie

One year into the Liminal Spaces Project, there has been a distinct air of industry amongst the team as it moves apace towards the next phase in Year 2. The scene was set for the first external Advisory Board Meeting, which took place at the National Museum of Scotland in Edinburgh on 13 January 2016.

The inaugural year’s aims have been achieved; including, identification of each member’s research objectives, and the production of a detailed co-authored concept paper.  The concept paper sets out the team’s multi-disciplinary approach to liminality and establishes concrete ways that this anthropological concept can offer insights into health research regulation, and vice versa. The team has also gone beyond these year one aims, for example by producing an article analysing a European Court of Human Rights case judgement on organ transplantation (the article is currently in press for Medical Law International), and by submitting a co-authored paper on social value to another peer-reviewed journal.

Walk the Walk, Talk the Talk: A Critique of the Medical Model by Michel Foucault

Guest Post by Mathilde Pavis

From the beginning, the InVisible Difference project decided to focus on physical disability in connection to dance and law. Though many factors came into play in deciding to narrow down our investigation to physical disability, the absence of ‘problems’ to fix regarding the practice of artists considered as mentally disabled was not one of them. We do acknowledge that there is much to do in terms of research, support and appreciation of the art made by mentally-disabled individuals. There is also much to learn from the historical evolution of what was once called the 'art of the insane'.[1] The cross-overs between our work with differently-abled dancers and the evolving status of 'mental art' in our society will thus be a theme running through this blog post and future ones.

The Motley Coat of Data

By Leslie Stevens

As a lawyer I am accustomed to, but sceptical of, hard and fast categories – we know all too well that bright line rules and seemingly fixed categories raise more questions than they provide answers. In data protection several such categories exist: anonymous data and personal data, sensitive personal data and ordinary personal data, data controller and data processor and so forth. Given the current reform of data protection law in Europe, and the anticipated introduction of the General Data Protection Regulation circa 2016/2017, questions should be (and have been) raised as to the effectiveness of these categories as regulatory tools. The lines between anonymous data and personal data have been blurred – the ease with which data may be re-identified and the power of data linkage has revealed the fallacy that is truly ‘anonymous’ data. Ordinary personal data, once considered innocuous, when combined with any countless array of other data, are likely to reveal intimate details about people’s lives – far more sensitive than data protection law would recognise.

Elberte v. Latvia: a curious case of tissue, relatives and the ‘right to private life’

By Edward S. Dove

A European Court of Human Rights (‘ECtHR’) decision rendered on 13 January 2015 (Case of Elberte v. Latvia) has raised an interesting question regarding the nature and scope of the right for relatives to oppose the removal of their deceased loved one’s tissues, including for transplantation purposes.

In this case, a Latvian man died in an automobile accident in 2001. The following day, his body was transported to a forensic centre, where an autopsy was carried out. The Latvian Government alleged that after the autopsy, the forensic medical expert verified, as required by the law at that time, that there was no stamp in the deceased’s passport denoting his objecting to the use of his body tissue. Nor were any objections to the removal by the deceased’s relatives communicated to the examiner. Consequently, a small portion of his body tissue was removed, purportedly, the Latvian Government claimed, for transplantation purposes. A few days later, a relative retrieved the body and the next day, the funeral took place. This was the first time the deceased’s wife, Ms Elberte, saw her husband since his death. She noticed that her husband’s legs were tied together; he was buried this way.

I can't seem to take this coat off!

By Nayha Sethi

Last month, the Mason Institute had the privilege of co-hosting a guest lecture by eminent Public Health Law Professor Larry Gostin, entitled ‘Imagining Global Health with Justice’. Professor Gostin discussed his latest book Global Health Law and considered the arguments made therein against the backdrop of the recent Ebola outbreak. This was the first opportunity that I had to listen to him speak and I am so glad that I went along, but I left encased in a motley coat of emotions that I just can’t seem to take off.

First, inspiration: the passion with which Professor Gostin spoke, the considerable progress that has already been made in improving global health and striving towards the UN Post-2015 Development Agenda. It was heartening to hear that so many individuals and institutions are dedicating themselves towards the achievement of global health with justice. Professor Gostin shared with us some very important ways in which we might do so. Then along came shame closely followed by guilt: as we were reminded of the inequalities within the world, the narrative of hardship and suffering, ‘the narrative of the poor’ that remains. The fact that we are focussing on ‘the wrong priority’ and the injustices of global disparities in health. The fact that the international community has failed the countries most affected by Ebola.

Student Blog - Presumed Consent to Organ Donation in Wales: A Brief Commentary

By Scott Clair
3rd Year Undergraduate LLB Student, University of Edinburgh

The decision of the Welsh Assembly to introduce a new ‘opt-out’ system for organ donation is one which raises interesting ethical questions. On the one hand, there are those who strongly endorse such an approach on utilitarian grounds as one which will lead to a substantial increase in the amount of organs for transplantation – indeed the Welsh government have already hypothesised that the introduction of such legislation will lead to an increase in donors of about 25 per cent. Conversely, one may question the ethics of such a ‘presumed consent’ model, which raises the wider ethical question of whether consent can ever be said to be true in any meaningful sense where it has been presumptively pre-ordained by policy.

The Draft General Data Protection Regulation: current proposals [UPDATED 5 November 2013]

By Leslie Stevens

UPDATE, 5 November 2013: After much delay, the Civil Liberties, Justice and Home Affairs Committee of the European Commission considered and approved submitted amendments to the original draft of the proposed General Data Protection Regulation on 21 October 2013. The European Parliament aims to agree upon a finalised version of the Regulation by May 2014. Despite these intentions, recently published conclusions reached by the European Council have spurred intense debate over the possible postponement of the Regulation until 2015, and thus possible abandonment of the current draft proposal. However, given the political climate after revelations regarding surveillance of European citizens by the United States' National Security Agency, it remains a distinct possibility that the Regulation could meet the summer 2014 deadline. (The current draft as approved on 21 October 2013 can be downloaded here and here.)