04 July 2016
ByAppeared in BioNews 858
Bioethics conferences don't get much bigger than this – the International Association of Bioethics (IAB) Congress drew 700 attendees to the Edinburgh International Conference Centre.
As it was my first big bioethics conference I was uncertain of what to expect. I was also unprepared for the weather (the off-topic discussion point of the conference): a mix of cold, rain, cold rain and rain and cold. At least, unlike at Glastonbury, there was no mud.
Although my work here at the Progress Educational Trust involves bioethics, that is not my background and I don't speak the language. Would I be welcomed, or would I be shunned as an imposter? Happily, it was Fáilte! (My Gaelic is even less competent than my bioethics, but I was assured by the chair of the congress organising committee, Professor Graeme Laurie, that it meant 'welcome'.)
The programme had plenty to offer. Alongside plenary sessions from the headline acts, there were many intriguing multiple parallel strands. So, like at Glastonbury, that led to many frustrating timetable clashes. It would have been nice – if not ethical, depending on who you ask – to have cloned myself and to have been in two places at once.
Most delegates had a colleague to split the workload with, but unfortunately Progress Educational Trust can't afford for two people to be out of office and in a hotel all week. I had to make some tough choices and even risk offending people whose work I greatly admire.
So, for that reason, I was otherwise engaged for sessions on artificial gametes, enhancement and gamete donation, which featured an intriguing paper by Professor Stephen Wilkinson: 'Should People with Dyslexia be allowed to Donate Gametes?'
Similarly, I missed out on the busy arts strand and a production of 'HeLa' about Henrietta Lacks, which clashed with our own event on egg freezing (see BioNews 857). I had also highlighted 'Playing God: The Rock Opera – A New Tool for Bioethics Education and Public Engagement' in my programme but that clashed with 'Reproductive Rights and Liberties', which contained two papers on surrogacy.
As I am on a quest for a solution as to how to improve surrogacy law, that session was a must. Ultimately, the speakers didn't provide me with a concrete policy solution, but where else would I have had the chance to hear Professor Ruth Macklin from the Albert Einstein College of Medicine in the Bronx (who is considered to be one of the founders of the field of bioethics) and Dr Debra Wilson from the University of Canterbury, New Zealand, who is carrying out a three-year project on surrogacy for the New Zealand Government?
The keynote by Professor Alondra Nelson – 'The Social Life of DNA: Political and Ethical Implications of Genetic Ancestry Testing' – on the final day was fascinating. She described how direct-to-consumer genetic tests for genealogy are being used for sociopolitical ends. Genealogy is a massive pastime in the USA and has spawned a lucrative industry. The desire by some people to establish ties with African ancestral homelands, to rethink and sometimes perhaps alter citizenship, and to investigate ancestors' lives in slavery are just a few of the drivers for taking the tests.
More generally, Professor Nelson challenged the audience to ask how bioethics could be flexible enough to accompany genetic data as it travels across social and institutional domains with varied regulatory norms.
Baroness Onora O'Neill gave the final keynote address, 'Public Goods and Private Data'. In this presentation she discussed the collection of and use of patients' data by public health researchers and practitioners. Is this type of practice only acceptable if no individual can be (re)identified? Is the European Union's data protection approach to rights to privacy fundamentally flawed in an era of big data and data linkage?
The real question is how to regulate all kinds of data, O'Neill proposed, not about the distinction between personal and non-personal data. She argued that privacy would be better protected by governance rather than by defining 'personal' information and suggested penalties for sloppy custodianship.
Such taxing subject matter at the end of an intense conference may have lulled a Ceilidh-fatigued audience to sleep, but she delivered her speech excellently – it even had a touch of Dame Maggie Smith about it. Her thoughtful presentation was also peppered with wry comments such as: 'What's not to love about the ambitious aims of data protection legislation?'
So the good Baroness had kept us all alert, but surely the presidential address would be more platitudinous – just a list of thank yous, allowing time for a power nap?
Not at all. Dr Angela Ballantyne, president of the International Association of Bioethics, kept the energy levels up. Her theme was justice in bioethics and she questioned why progress had been so slow, citing surrogacy in India as an example. It was a very powerful address, in which she challenged the audience to step up and influence policy. What a way to send us on our journey home.
I got an awful lot out of this well-organised conference, both from its content and the opportunity to meet bioethicists from around the world. But what is my opinion worth as a newbie? Well, the word among veterans of these bioethics equivalents of Glastonbury was that this could be rated the best yet, and by quite a margin. Well done to Professor Laurie and his team. Perhaps in ten or 20 years' time people will still be saying: 'You had to be in Edinburgh in the rain listening to Onora.'