ABSTRACT
Chapters 2-5 provided contextualised examples which showed how the concepts of choice and consent are central to how human genetics debates are framed. Choice and consent are key frames in the donation, selling or trade in bio-material such as DNA and human eggs (chapters 2, 3). They are key frames in debates on genetic testing and screening, for example the use of PGD and PND (chapter 5), and are also central to debates on participation in drugs and biomedical procedures trials and also access to a range of bioproducts (chapters 4, 5). We have seen that these are terms which are constructed, used and also contested by different publics, both in terms of what these ‘choices’ and ‘consents’ signify, and in terms of how the concepts themselves measure up as ways of framing the debate. For example here is ‘Angela’ talking about prenatal screening: ‘some people think screening is all about eugenics, so you have to … address those sorts of concerns, and balance it out with other issues like informed choice’. This represents a selfidentified ‘balanced’ view from a civil servant. But how balanced is this ‘for or against’ framing? Arguably, it frames those voicing concerns about eugenics as being ‘anti choice’. There are other social contexts where concepts of choice and consent are
found and these inform, and in turn are informed by, the development of discourses in the sphere of genetics and related bioscience. This again highlights how ‘debates on human genetics’ are debates about social life more generally. Informed consent, for example, is a complex and contentious subject in relation to other bio-ethical issues of bodily autonomy such as end of life. The concept of ‘presumed consent’ recently discussed in the UK as a feature of an ‘opt-out’ approach to organ donation (Dept of Health 2008b), is a discourse which could be utilised in other bio-ethics contexts such as human genetics ones. Defining and unpacking these words is important, especially as they can
mean different things to different people in different circumstances; they are not value neutral and hence the use of, and challenges to, these terms and what they signify, is a very significant aspect of human genetics debates.
Further, especially as the two terms are often used together when people are talking about a specific thing – for example, the use of PGD – it is important to identify the difference between the idea of choice as a preference, and informed consent as a bio-ethical principle with legal implications. There is a tendency for discourses on ‘choice’ and ‘informed consent’ to blur together in public discourse, including in governance settings. UK policy makers and regulators in particular are using (and defining) informed consent and also individual choice in specific arenas. They have a key role in terms of setting the framework for public consultation and debate. The HFEA uses informed consent as a key term in relation to egg ‘donation’ (chapter 2). The National Screening Committee (NSC) has multiple documents relating to screening procedures, and interestingly the term informed choice appeared in a webmounted document summarising its criteria whereas the term informed consent was absent.1 As discussed in chapter 2 and chapter 3, those involved in the collation of bio-samples, such as the UK stem cell bank, are themselves involved in defining informed consent criteria. The Human Genetics Commission (HGC) discusses informed consent and also makes significant use of the term ‘choice’; an important 2004 HGC public consultation document on PGD and PND was entitled ‘Choosing the future’ (HGC 2004). Bio-ethics stakeholders and related ethical advisory bodies such as Nuffield also refer to choice, as well as consent, as a key term. Section one examines the use of informed consent in specific circum-
stances, and using examples from chapters 2-5, shows ways in which it is defined, used, and also challenged, by different prime movers. For example, feminists have queried whether the definition and use of informed consent in relation to egg donation in the UK is too narrow a concept fully to do justice to the range of issues at stake when such procedures are being considered. Informed consent in a medical context is a specific bio-ethical principle, developed in relation to patients (Herring 2006). It is an established aspect of procedures in human genetics which involve people, for example, as donors of bio-material, or as potentially undertaking a genetic test. Informed consent protocols are being developed in highly context-specific ways concurrent with developments in the biomedical field; for example, informed consent criteria in relation to DNA donation to the UK Biobank have been co-constructed as the Biobank developed through its pilot stages (chapter 3). Section two provides situated examples of how, when, why, where and by
whom ‘choice’ is used, responded to and challenged. ‘Choice’ is a term frequently used in tandem with, or as a substitute for, informed consent, in similar contexts relating to people’s interactions with human genetics and bioscience. ‘Choice’ is consciously used as a key means of framing debates for specific prime movers, notably ‘pro research’ patient groups and ‘pro science’ lobby groups. People talk about informed, and individual choice; they also talk about a ‘right to choose’ and about ‘freedom of choice’. It is also very important to analyse the words ‘informed’, ‘individual’, ‘right’ and ‘freedom’
which often accompany the terms consent and choice. All these words have significant implications and inherent values attached. They can have political resonances; for example, the term ‘freedom of choice’ was very much a tenet of the Blairite era (Blair 2007). There are important parallels between the discussion about individualised responsibility for one’s own health (chapter 6) and the idea of an ‘individual right to choose’. There is an implication of citizenship as an individualised condition in many of these terms. The idea of people as citizens having a ‘right’ to make highly individualistic ‘choices’ enrols a specific model of society.
