As Easter approaches it does not seem like it is coming up to a year since there was widespread debate in the media concerning the Human Fertilisation and Embryology (HFE) Bill with particular reference to human admixed embryos. Although the debate rumbled on for many months it was the Easter weekend last year that the debate reached a particularly frenzied state when in Scotland, Cardinal Keith O’Brien used his Easter sermon to brand the Bill a “monstrous attack on human rights, human dignity and human life” which would allow experiments of “Frankenstein proportions”.
The provisions of what is now the HFE Act are planned to be rolled out in three stages. A year on and phase one will taking place next month in April 2009. This concerns the revised definitions of parenthood. Phase two which will take place in October 2009 with see the amendments to the 1990 legislation take effect. A year from now, in April 2010, the parental orders will take effect.
As a result of the Act coming into force a number of events are taking place over the coming months which are seeking to take a retrospective look at the advent of the Act, the policy making process and what lessons, if any, can be learned for future policy making.
A retrospective
One such event which took place on the 12th March was the one day conference convened by the ESRC Genomics Policy & Research Forum in London, just round the corner from the Houses of Parliament. The day sought to bring together contributions from some leading figures in the worlds of science, policy, ethics and media in order to examine the nature of the public debate leading up to the Act.
Opening the event was Dr Katy Berry from the Department of Health who provided a very helpful and informative presentation which clearly set out the history and context of the bill’s development and passage through Parliament. The second session of the morning focused on democracy in practice and included presentations from Mr Phil Willis MP, who chaired the joint committee on the Draft Human Tissue and Embryos Bill 2007; Professor Phil Cowley from the University of Nottingham and Sarah Norcross, Director of the Progress Educational Trust. Willis’s presentation offered perspectives from within Parliament and a survey of the activity and deliberations of the joint committee. He made a compelling point during his presentation that the less detail contained within a bill allows for greater flexibility on the regulatory front in order to future proof legislation. Such a move avoids having to come back to Parliament on a regular basis in order to legislate for new circumstances. However, the fact that he seemed to think the final Act was a job well done seemed to be exaggerated. Willis opened his presentation by referring to a quote from US physician Richard Cooke who spoke on the need for ethics and science “to shake hands”. It would be interesting to know whether in the case of the HFE Act, Willis felt that the Act had enabled that to happen. In my opinion the views and opinions offered during the rest of the day would seem to suggest otherwise.
Openly admitting a distinct lack of understanding of embryology and science in general, Cowley’s presentation made a distinctively unique contribution to the day in terms of focusing on the politics surrounding the Act including reference to voting patterns, what shapes voting patterns and the impact of supposedly “issues of conscience”. His presentation provided a very helpful and succinct survey of parliamentary behaviour surrounding the Act. What was fascinating to see was the effect of whipping votes and how decisions to whip votes changed as the bill progressed through Parliament. From Cowley’s research, free votes were only given once it had been calculated that the same outcome could be reached if the votes were whipped. The thinking seems to be, not just for the HFE Act but in the case of voting strategy generally, that you are liable to alienate backbenchers on issues of conscience if you whip the vote. Therefore, offering free votes allow the opportunity for backbenchers to vote as they wish but generally they end up voting according to the party line.
Norcross gave an interesting presentation on the work of PET in seeking to engage the public on the important questions presented by the Bill such as saviour siblings, the need for a father and human admixed embryos. This presentation offered a helpful set of reflections on the importance and value of bringing together representatives from different perspectives, along with the involvement of the public, in order to engage in dialogue together.
Following lunch, ‘Coalitions campaigns and turning points’ was the theme for the first afternoon session with contributions from Dr. Stephen Minger, King’s College London, Fiona Fox, from the Science Media Centre and Dr. Calum Mackellar. Minger helped to put forward the case of scientists wishing to pursue work with hybrid embryos and gave a succinct and clear presentation on their aims and motivation. He clearly advocated that it was his desire along with many scientists to be actively seeking regulation for their work as opposed to behaving like a bunch of cowboys who are seeking to run amok.
Clearly advances in science are taking place at a rapid rate none more so than in the field of stem cell research. Many tracking these advances would not fail to recognise that the whole question of human admixed embryos may become redundant in light of the research within the last year into the potential use of induced pluripotent stem (iPS) cells. Induced pluripotent stem cells are a type of pluripotent stem cell which can be artificially derived from a non-pluripotent cell, typically an adult somatic cell. They were first produced in 2007 from human cells and have been pointed to as an important advancement in stem cell research due to the fact that it may allow researchers to obtain the all important pluripotent stem cells needed for research and particularly therapeutic research, without needing to use embryos. Minger et al argue that whilst not dismissing iPS cells, there is still the need to keep pursuing hESC research until greater understanding is reached in terms of what iPS are truly capable of.
The effective and organised strategy which the science community engaged with was exemplified in the presentation by Fox on the work of the Science Media Centre (SMC). The SMC is an independent venture working to promote the voices, stories and views of the scientific community to the national news media when science is in the headlines. In contrast to this, Mackellar’s presentation pointed to the fact that whilst a successful media strategy managed by the SMC was able to communicate accurate scientific information to politicians and the media, it clearly did not represent all scientists. For as Mackellar conveyed, some scientists were not willing to speak out due to the consequences that they may well have faced in terms of reduction or complete withdrawal of funding for their work. He candidly expressed that it was his opinion that scientific achievement and endeavour seemed to trump ethical questions and discourse in this instance.
The final session of the afternoon looked at social science perspectives and included contributions from Dr. Joan Haran from Cardiff University and Dr. Nik Brown from the University of York. Haran’s presentation offered some enlightening observations in terms of how the debate was framed in the media through the use of emotive words. Headlines such as “public consultation has been hijacked” only help to strengthen resentment and associate the activity of those who may well be against a certain aspect of research as operating in an almost terrorist like manner towards public consultation. In a similar vein but with regard to a specific aspect of the Act, Brown’s presentation explored questions concerning the species barrier and the distinction between human and animal in the context of discussion over human admixed embryos.
Reflection and response
In reflecting upon the day’s retrospective look at the HFE Act, three key issues seem to emerge which I would like to present here.
The role of the media
First, what becomes quickly apparent from events surrounding the HFE Act is the influential role of the media in helping to communicate and disseminate to the publics the necessary information and perspectives on the issues in question. However, the type of information being communicated and how it is communicated is what I wish to flag up. This is not intended to be a rant criticising and pulling down journalists or criticising the influence and power of the media in our day. Clearly the hard work and strategising of outfits such as the Science Media Centre need to be congratulated in helping to get the perspectives and opinions of scientists how into the media and public arena.
However, when I hear accounts of how a panel of journalists acted as a barometer for politicians to decide what the public would and would not understand in terms of science and terminology, I do get very concerned. Why should journalists be asked to assess what I will and will not be able to understand? What information is not being communicated to me on the basis that other people think that I will not understand it?
Clearly there is a wide spectrum of understanding on these kinds of issues and so it is inevitable that some will understand more readily or are able to comprehend terminology, processes and implications more readily than others. However, I would like to be able to make that decision myself. Surely there can be a happy medium where the facts and information are presented in a way that allows for people to engage at whatever level is appropriate to them, putting the decision making power into the people’s hands. What is more, surely effective public consultation is what helps to determine what the people truly understand? As was explored during the day this question probably points to the need for more effective and true public consultation of the kind that consults and is not merely an opportunity to elicit opportunities to persuade the public as ‘consultation’ in disguise.
To reiterate, I do not wish to attack journalists per se. In fact I see this as highlighting the need to ensure we see an increase in good quality journalism produced by journalists who understand science. It is a point for concern that there are far fewer dedicated science journalists in the UK than on the other side of the Atlantic. Whilst some may read my comments as putting a slur on journalists who write on science stories but who do not have a science background (which I am not), nevertheless I do think that those who come from a science background probably have a far greater level of understanding and expertise at their disposal in order to communicate effectively the facts of the story. Encouraging a new generation of science based journalists to emerge must only be positive.
Are all who disagree luddites and hijackers?
Secondly, in relation to the issue of public consultancy and involvement, the interesting question was posed by Dr. Haran during her presentation as to whether or not if a member of the public is not persuaded of the necessity of the particular form of research, must they automatically be a luddite, a moralist or a member of a pressure group? I see a lot of value in thinking over and reflecting on this question in more detail in light of the events surrounding the HFE Act and as one looks to the future shaping of public policy. In certain cases, it is probably true that some who oppose certain research may be from a pressure group. But in other cases - and perhaps more cases than we can to imagine at first – people may simply object based on good reason but should not be labelled as being a luddite. If we truly believe in having a conversation involving all those from different persuasions, opinions and background we would do well to refrain from labelling people too quickly.
What kind of relationship do we want?
Thirdly, the success of the HFE Act will more than likely be attributed to the success of the science community communicating their case effectively to the politicians and public policy makers. In response, critics may well point to this an evidence of an ‘unhealthy’, ‘inappropriate’ or ‘unnecessary’ partnership between scientists and the government. But we would do well to consider what kind of relationship do we the public desire there to be between science and the government. For seeking after a scenario where there is no means of interaction between the two may be far worse.
From a sociological perspective, if ‘partnership’ does not adequately establish the relationship, does a contractual, hierarchical, maternal or paternal express it more accurately or does it require something entirely different? This is a question which really needs to be considered carefully if we truly want to see effective and beneficial policy making take place.
Conclusion
Clearly the discussions will continue over how the Act came to be, how it was shaped and formed as well as its effectiveness. What is for certain is that as science and technology develop, the highly contentious balancing act will continue to ensue between freedom of research, the duty to heal and the duty to protect human life and dignity to say nothing of engaging in true consultation to garner public opinion. However difficult and challenging this may be we ignore it at our peril.
Audio files, PowerPoint presentations and the programme for the 1-day conference can be found on the Genomics Forum website.
