The Age of Personalised Medicine: Genes, Privacy and Discrimination
Charles Darwin House, 12 Roger Street, WC1N 2JU, UK
Thursday 21 July 2011
'The Age of Personalised Medicine: Genes, Privacy and Discrimination' was the last in BioCentre's 2010/2011 symposium series 'Revolution, Regulation and Responsibilities', and promised to 'appraise current developments and consider the current legal and regulatory position for their use before taking time to reflect and assess the future impact on society'.
The symposium certainly fulfilled its promise to analyse the current state of personalised medicine; by the end of the afternoon the six speakers, from range of disciplines, had covered numerous relevant issues. However the two Q&A sessions ended a little abruptly and I was disappointed that some panel members had no chance to summarise their opinions or comment on their peers' talks.
The first talk, given by Brenda Almond, Emeritus Professor of Moral and Social Philosophy at the University of Hull, took us on a whistle-stop tour of the ethical issues around genetic testing. Her arguments had clarity and balance, and she dealt with the complexities exceptionally well, especially given the time restraints.
She covered several topics with one of the most thought-provoking being the concept of 'informed consent'. How does this apply to newborn children (is there such a thing as 'consent by proxy'?) or family members who may be affected by their relative getting tested? And can patients ever be fully informed without a good grasp of the risks and statistics associated with genetic conditions?
Both she and another speaker, Helen Wallace, the director of GeneWatch, spoke of the increasingly easy access to genetic tests, particularly 'Direct To Consumer' (DTC) kits now widely available online. Professor Almond labelled this a 'mixed blessing' because of the difficulty in balancing harm and benefit: medicine aims to do good, but we should be wary of turning healthy people into 'perpetual patients' or creating a nation of the 'worried well'. Furthermore, what is the benefit of 'impotent knowledge'? For example, finding out you have a serious illness for which there is no treatment.
Getting life insurance was another often-mentioned concern. Will a heightened knowledge of our genetic predispositions and potential disorders mean we're refused insurance, or offered it at unaffordable premiums?
In her talk, Dr Ruth Stirton, from the Sheffield Institute of Biotechnological Law and Ethics, explained that insurers would want to use this information to ensure the cost of a claim would be covered. Professor Almond reminded us that insurance companies have a voluntary moratorium on asking for genetic information, but wondered how long it will last - '[is this] so powerful that it might undermine the way that insurance works?'
Dr Stirton ended by capturing the insurance dilemma succinctly in one sentence: 'Do we want to live in a society that values money more than what people need?' Changes in the insurance market will affect the lives of those we wish to protect, but the market can't correct itself. Other speakers included Alison Hall from the PHG Foundation, who explained their work and the projects they are currently involved in, and Dr Adele Langlois, from the School of Social Sciences, University of Lincoln. Dr Langlois thoroughly analysed UNESCO (United Nations Ethical, Scientific and Cultural Organisation)'s bioethics programme. She explained its role and gave a well thought-out critique of its flaws while offering suggestions for improvements along the way.
I found this insightful and informative because - like a fairly large proportion of the audience - I knew little of the programme or its inner workings.
A particular highlight of the afternoon was the talk given by Aaron Parkhurst, who is studying for his PhD at the Centre for Applied Global Citizenship, University College London. His description of a group of people from the United Arab Emirates with a skewed understanding of genetics highlighted what a difficult concept it is to explain, and how careful healthcare practitioners must be when advising people on inherited diseases and lifestyle management. In fact, this was such an interesting piece of anthropological research, BioNews commissioned Parkhurst to write a comment piece - look out for that, it's coming soon!
Overall, I enjoyed the symposium. The presentations didn't go over the same ground and the speakers put forward important questions. Unfortunately, I don't think that there was enough time left to analyse or discuss the future implications of these issues. The panellists and audience felt similarly; I could sense a lively debate in the offing, but sadly it was cut short before it really began.