Designer Babies: Talking about Policy, Product and Personhood.

Initial Research Proposal May 2008

Hollie Honeyman.

Introduction
The term designer babies is used by journalists to describe the scenario in which individuals will be able to modify embryos in order to ensure that they develop certain desirable or cosmetic characteristics. Although this situation is not yet a reality, it is possible to investigate the positions that are emerging within society in relation to this issue courtesy of public discourse. The changes that have occurred in the sphere of reproductive technology over the last decade have attracted wide-spread media attention. As a result of the initial developments in this field, the Human Fertilisation and Embryology Act (1990) was implemented in 1991. This provided a framework under which the provision of assisted conception services could be regulated. As a result of this legislation, Britain became the first country in the world to establish a body, the Human Fertilisation and Embryology Authority (HFEA) with statutory powers to both license and regulate centres that provide fertility treatment. Ever since these first steps, Britain has retained its position at the forefront of this field, something which became particularly apparent in 1997 following Natures announcement of the birth of the worlds first cloned mammal Dolly the Sheep in Scotland (Wilmut, Schnieke, McWhire, Kind & Campbell 1997). Such advances in reproductive technologies appear to have increased the possibility of individuals being both scientifically able and legally allowed to genetically design their offspring. This notion has been a particular concern in media representations of these issues since July 2004 when there was a relaxation of the rules surrounding parents ability to select embryos in order to produce saviour siblings for their sick children. Prior to 2004, the Human Fertilisation and Embryology Authority (HFEA) would only allow Preimplantation Genetic Diagnosis (PGD) to be used to create a tissue match for an ill child if the developing foetus was also at risk of inheriting the disease. If this was indeed the case, tests for the inheritable disease took place at the same time as those which looked for a tissue match with the ill sibling, with a cell sample being removed at around the eight cell stage (HFEA, July 21st 2004). Only those embryos that were both disease free, and tissue matches for the ill sibling would 2

then be implanted. Treatment methods use the stem cells found in the umbilical cord of the saviour sibling, which would otherwise have been discarded. However, in July 2004, the HFEA decided to extend these initial more precautionary boundaries in order to allow parents (subject to application approval) to screen for tissue matches for ill children regardless of the heritable risk of the disease in their further offspring. The chair of the HFEA, Suzi Leather stated that after reviewing the potential physical and psychological harm caused by such treatment, that the risks associated with sibling to sibling stem cell donation are low and this treatment can benefit the whole family (HFEA, July 21st 2004). In the period since July 2004, developments, such as the proposed creation of hybrid embryos consisting of 99.9% human and 0.01% animal tissues, have sparked debate. Rather than creating true hybrids where a human egg is fertilised with animal sperm, these embryos replace the nuclear DNA found in an animal egg with human DNA (New Scientist, Oct 2007). As early as 2000 the government made their position against such research clear, with the Chief Medical Advisor, Sir Liam Donaldson recommending that the mixing of human cells with live eggs of any animals should never be permitted (Department of Health, 2000). This view was expressed again in December 2006, when the government proposed to ban such experiments in all circumstances. However, in January 2007, the HFEA ruled the use of such embryos for research into diseases to be legal under the Human Reproductive Cloning Act 2001 which prohibits the placing in a woman of a human embryo which has been created otherwise than by fertilisation. In February 2007, Sir David King, the governments Chief Science Advisor took a stand against government proposals to ban the creation of hybrid embryos by backing research and developments in this field. The debate has been further complicated by the involvement of government advisory group, the Human Genetics Commission, who called for the government to drop their opposition to the research (The Guardian, February 28th 2007). The differing positions of individuals advising the same government highlight what contentious issues reproductive technologies and designer babies have become and how it has the tendency to polarise views.

Any changes that are made to policies relating to reproductive technology, and more specifically designer babies, are likely to have implications for other areas of individuals lives, such as family relationships and notions of individuality. Although legislation will only specifically relate to the former issues, these changes have the potential to affect how individuals are viewed within society, for example with children becoming treated as commodities or being purchased as products that fulfil specific parental requirements. This suggests that traditional assumptions of personhood and individuality may be challenged by the potential policy changes in this sphere. As a result, it appears that when exploring the issue of designer babies, it will be beneficial to consider the implications related policies will have for the notion of individuals as products, and also for societys construction, and assumptions of, personhood.

Literature Review
Existing Literature It has been recognised that the media are a central arena in which battles over the social impact of genetic advances are fought. By framing stories in certain ways through the use of well established linguistic frames, narratives, facts and fictions they play a critical role in shaping public understanding of genetics and genomics. (Nerlich et al, 2003:473). If this is indeed the case for public understanding of such issues, it is likely that the media and the discourses that they present also have a major influence upon the representations of such issues that individuals take up. The creation of designer babies is frequently associated with the use of unnatural and often consumer-related language. The term designer baby itself suggests that the resulting child is of higher quality and is therefore more sought after than those who are positioned as non-designer in comparison (as with designer clothing). The notion of likening designer babies to commercial products is put forward by Tizzard (2002) who suggest that as reproductive technologies develop, and parental choice increases, a consumerist attitude towards having children will emerge. In turn, this is likely to change the very nature of the parent-child relationship, since the essence of 4

consumerism implies that once a product (in this case the child) has been purchased, and its purpose has been served, it is then disposed of. Indeed, English and Sommerfield suggest that the phrase designer babies implicitly compares the child to a fashion accessory or just one more aspect of medical technology becoming a lifestyle choice... The term suggests the potential to purchase a package of human attributes as easily as any other foray in retail therapy (2002:7) Together with the use of specific types of language, it has been suggested that in media representations of the new genetics, the views of the general public are used to represent the human angle in contrast to the expert opinions voiced by scientists (Anderson, 2002). Not only are there differences in the way both groups positions are portrayed within the media, but also in the frequency at which this occurs. A content analysis of press coverage of the Human Genome Project conducted by Riechert (1995) revealed that comments made by scientists far outweighed those made by either consumer groups or citizens. Implicit to this tendency may be the suggestion that the views of scientists are of more value or worth than those of the general public. Even when the opinions of the general public are sought, it as been suggested that not all groups found within society are represented equally. Both feminists and those involved in disability studies argue that women and the disabled community (both of whom would be directly affected by the legalisation of designer babies) are routinely underrepresented during consultations about these issues. Shakespeare, for example claims that the viewpoint of disabled people themselves, that is to say, people living with the conditions that geneticists aim to locate, is rarely if ever considered (1995:30), suggesting that mainstream discourses found in the media tend to marginalise certain groups. Similarly, feminist analysis of womens position within medical and scientific developments have suggested that during pregnancy the focus has become increasingly on the foetus (Jordanova, 1980; Oakley, 1984) rather than upon the pregnant woman as was previously the case. Research carried out by Franklin (1993) which analysed the UK debates surrounding the Human Fertilisation and Embryology Bill supports these claims, and highlights the extent to which the embryo has become an isolated object. This may suggest that the discourses of women, like those of the 5

disabled community, have been marginalised in the debate surrounding advancements in reproductive technologies. Previous research not only indicates that certain groups within society are more likely to be excluded from the debates relevant to developments in reproductive technology, but also that certain religious communities approach the matter in a variety of ways. For example, it has already been noted by Richards (1993:580) that different communities seem likely to adopt different approaches to their particular genetic problems.... In order to support this viewpoint, the Cyprus thalassaemia programme and a different approach taken within the Jewish community can be examined. In the former case, the Orthodox Church of Cyprus is insistent that those who marry are aware of their partners carrier status for thalassaemia. If it is discovered that both partners are carriers, prenatal diagnosis is likely to be used, with affected foetuses being aborted and only those embryos that are free from the disease being implanted. In this situation abortion of affected foetuses is considered to be acceptable, whereas in many other circumstances this is not likely to be the case. In contrast, within the Orthodox Jewish community, the abortion of affected foetuses is not permitted and instead young adults are tested for carrier status of Tay Sachs disease, with these results being known to matchmakers who organise arranged marriages. These results are then used to ensure that two carriers are never paired together, thus eliminating the chance of producing children affected by the disease. Although these examples are taken from very different communities, and even different countries, the potential range of interventions and approaches taken towards genetic disorders by different groups can be seen. As contemporary British society is highly multicultural by nature, with diverse religious groups represented, it may be that a similar variety of attitudes towards various reproductive interventions and practices exists, something which is not reflected in the current literature or media portrayals of the issue. This assumption that various groups found within British society will hold differing views towards designer babies and reproductive technology may be explained by social representations theory (Moscovici, [1961] 1976). According to Moscovicis theory, individuals actively construct their social worlds rather than simply receiving it passively. Social representations are seen as a device that enables this construction to occur, and allow unfamiliar events or concepts (such as designer babies) to made 6

sense of. This familiarization of the unfamiliar occurs through the processes of anchoring and objectifying (Moscovici 1984). The process of anchoring depends on naming or classifying these unfamiliar items or events. According to Moscovici by classifying what is unclassified, naming what is unnamable, we are able to imagine it, to represent it. Indeed representation is, basically, a system of classification and denotation, of allotting categories and names (1984:30, cited in Eiser, 1996:245). Anchoring therefore is the process by which novel experiences come to be assigned to an individuals pre-existing categories, or else are made part of an existing representation, typically the conceptual category that makes the novel item appear most familiar. During objectification, on the other hand, the novel object is transformed into a concrete, possibly pictorial, element of the representations to which it is anchored (Potter, 1997:142). As a result of this, the old representation grows a new element or branch to incorporate the new information. Over time, this new, adapted representation becomes diffused through the social group through various channels of communication, such as the media or face-to-face conversation. This means that the item or experience that was once considered to be novel becomes a familiar element of the reality for this particular social group. Largely because of this, neither anchors nor objects are considered to be fixed, but instead act as transitional pointers in the evolution of meaning as an aspect of the world (Bauer & Gaskell, 1999:172). The issues surrounding genetic engineering, and in this case more specifically designer babies have, throughout their history, produced many novel developments and challenges, which have required popular anchors and objectifications to be continually produced (Nelkin & Lindee, 1995; Bauer & Gaskell, 1999). This point has been illustrated by Bauer and Gaskell, who suggest that Dolly the Sheep was both an anchor and visual objectification which served a variety of functions for different groups. For some it was an icon of the wonders of scientific process, for others it was the beginning of the end, the arrival of Huxleys Brave New World in the form of the sacrificial lamb which calls for public demonstrations of dissent (1999:173).

This would suggest that social representations act as a lens through which individuals view their world, and members of the same social groups (such as religious groups) are likely to view issues in the same way as each other, but yet differently from those groups who do not share their social representations (that is from other religious groups). As a result, it is thought that the boundaries of these different social groups can be identified by discovering where the influences of their respective social representations begin and end (Stainton Rogers, 2003).

How would the proposal add to the body of research?

As previously stated, there has been little research conducted within the emerging field of designer babies. In particular, when considering media representations of such issues, it appears that few (if any) attempts to consider whether such representations reflect the diverse views held within British society have occurred. In order to address this, the proposed study aims to analyse mainstream representations found in the media and compare these to the social representations of designer babies favoured by a range of religious groups found within British society.

Literature Review Skeleton. The plan for the literature review as outlined chapter by chapter in the follow section is not concrete and may need to be revised during the course of the thesis. However, this aims to provide an indication of the issues and representations that further reading will be organised around, and the direction the research is currently expected to take.

Chapter 1: Introduction This chapter will include a summary of the research project as a whole together with its relevance. A definition the term designer baby will be introduced, but not examined in any depth as this will be addressed later in the review. The importance of 8

the debate surrounding designer babies will be considered briefly, not only for the sphere of reproductive technology, but also for policy, personhood and product. Lastly, a brief outline of the contents of each chapter of the literature review will be provided.

Chapter 2: The development of reproductive technologies and current policy In this chapter designer babies will be placed in their historical context. In order to do this, the historical changes in the sphere of reproductive technology will be examined. A particular focus will be placed upon the period since the birth of the first test tube baby Louise Brown in 1978. The science behind designer babies (and associated procedures such as PGD or the creation of saviour siblings and hybrid embryos) will be introduced. The policies that are in place to regulate both the development and application of such reproductive technologies will be outlined in order to provide the context of the designer baby debate.

Chapter 3: Designer babies as products. The notion of designer babies as products will be examined from two different angles. Firstly, the implication that children are commodities that can be designed to meet their parents specifications will be discussed. The connotations of the word designer will also explored, such as the suggestion that these offspring are of more worth, and of higher quality than those who become positioned as non-designer in comparison. Secondly, this notion of product will be extended to enable an examination of the commercial possibilities of legalising designer babies, for example the emergence of private companies, such as DeCODE who now offer genetic screening service to paying customers.

Chapter 4: The implications of designer babies for the notion of personhood.

In relation to the notion of personhood the implications for both the self and families will be suggested. An investigation of philosophical issues of individuality will take place, together with an examination of who would be recognised as the parent if embryos are routinely created using artificial reproductive techniques. The resulting implications for what this may mean for assumptions of being a parent will be discussed, together with the effects that this may have on the formation of kinship networks.

Chapter 5: A discursive history of the term designer baby. Chapter 5 will bring together chapters two, three and four by discussing when the term designer baby first emerged, as well as establishing how this concept has become embedded in everyday language. Of particular interest will be the social representations that have become associated with the term, and which representations and ideologies it is that are transmitted through policies and the media.

Research Questions
The proposed study aims to research social representations of designer babies held by different religious groups in the UK. It may be that current policies do not reflect the representations of society as a whole and that sub-cultural variations exist, for example within these different religious groups. (i) Do subcultural religious groups have distinctly different social representations of designer babies compared to mainstream representations found in the media? (ii) Do different religious groups have similar social representations of designer babies to each other?

Design

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The proposed study will be conducted using 2 distinct studies: Study 1 This study will examine mainstream social representations of designer babies, as found in media portrayals of the issues. These mainstream representations will be established by a content analysis of a variety of media sources, including news broadcasts, newspapers, parenting magazines, and more science-orientated publications such as Nature or New Scientist. Study 2 Study 2 will involve a series of focus groups featuring different religious groups. Pilot focus groups will be conducted at as early point as possible. These pilots are intended to aid the development of the structure of subsequent groups by indicating how best to initiate conversation between participants, for example either by presenting a mainstream discourse from the media for individuals to reflect upon or simply asking them to discuss the issue of designer babies. Techniques to bring the group back to focus and any potential problems that would not have otherwise have been considered will also be highlighted. The recruited religious groups will then take part in focus groups of approximately six to eight individuals, during which time they may be presented with examples of mainstream social representations or hypothetical scenarios to discuss. Each session will be filmed and analysed in order to identify any social representations that are either specific to each group or common across different religious groups. Focus groups are considered to be a suitable methodology, because unlike interviews, which are considered to be more appropriate for tapping into individual biographies... focus groups are more suitable for examining how knowledge, and, more importantly, ideas develop, operate and are expressed within a given cultural context (Kitzinger, 2006:28). Kitzinger goes on to suggest that through analysing the operation of humour, consensus and dissent, and examining different types of narrative employed within the group, the researcher can identify shared knowledge. (2006:23). As a 11

result, focus groups appear to allow cultural sensitivity to be observed, something which is particular importance in a study of this nature, which addresses the social representations of different religious groups. Focus groups will enable the examination of other related issues, such as the epidemiology of various concepts during focus groups, and track the distribution of various social representations which have not been initiated by the researcher. At the end of each focus group it is intended that an agreement will be reached between the participants about the key issues raised and the main social representations held by the group.

Sample. In order to recruit participants, heads of different religious groups will initially be contacted via letter with the intention of making telephone contact within the following two weeks. These gatekeepers will be involved in the recruitment process by either distributing letters inviting individuals to participate in the research, or else verbally inviting them. After this point, a face-to-face meeting between the researcher and those interested in participating will take place in order to discuss the process more fully before the research is undertaken.

Analysis
A grounded theory approach will be used in order to establish whether those issues raised in the focus groups are the same as the media representations of designer babies in relation to policy, product and personhood. An exploration of whether individuals have absorbed mainstream representations will be apparent in the ways in which they talk about the issue, for example by examining if individuals use the same metaphors and imagery that is commonly favoured in media portrayals.

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From this, theory will then be generated in an attempt to explain why people do (or dont) absorb mainstream social representations of designer babies, for example whether membership to a religious group provides resilience against such assimilation. In order to discern the role of religion in the uptake of mainstream representations, a focus group using a negative case, that is atheist participants, will take place. This is because if religion is found to create such resilience, it would be expected that these individuals will show greater assimilation of mainstream representations (and will therefore use them more readily) due to their lack of religious affiliation.

Reporting and Dissemination

Participants will be made aware of the projects progress and findings via a research website, which will be created shortly. It is also intended that journal articles will be created from the study, which will be submitted during the course of completing the thesis as well as being presented as conferences.

Timetable
Oct 2007 April 2008 Research methods courses Literature review Study 1 identify mainstream social representations Accessing sample Study 2 - Focus group data collection and transcription Complete data analysis Write thesis April 2008 Oct 2008 Oct 2008 April 2009 April 2009 Oct 2009 Oct 2009 Sept 2010

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References
Andersen, A. (2002) In Search of the Holy Grail: media discourse and the new genetics. New Genetics and Society. 21(3) 327-337. Bauer, M.W. & Gaskell, G. Towards a Paradigm for Research on Social Representations. Journal for the Theory of Social Behaviour 29(2) 163-186. Department of Health (2000) Stem Cell Research: Medical progress with Responsibility. London: DOH. Eiser, J.R. (1986) Social Psychology: attitudes, cognition and social behaviour. Cambridge: Cambridge University Press. English, V. & Sommerfield, A. (2002) Drawing the Line: the need for balance. In Lee (2002) Designer Babies: Where Should We Draw the Line? London: Hodder and Stoughton. Franklin, S. (1993) Making representations: the Parlimentary debate on the Human Fertilization and Embryology Act. In Edwards, E., Hirsch, E., Franklin, S. Price, F. & Strathern, M. (eds), Technologies of Procreation: Kinship in the Age of Assisted Conception. Manchester: Manchester University Press. Human Fertilisation and Embryology Authority (July 21st 2004) HFEA agrees to extend policy on tissue typing. http://www.hfea.gov.uk/en/1046.html. Accessed 21/03/08 Jordanova, L.J. (1980) Natural facts: a historical perspective on science and sexuality. In MacCormack, C. & Strthern, M (eds) Nature, Culture and Gender. New York: Cambridge University Press. Kitzinger, J. (2006) Focus groups. In Pope, C. & Mays, N. Qualitative Research in Health Care. Oxford, Blackwell Publishing. Moscovici, S. ([1961] 1976) Le Psychoanalyse: son image et son public. Paris: Presses Universitaires de France. Moscovici, S. (1984) The phenomenon of social representations. In Farr, R. & Moscovici, S. (Eds). Social Representations. Cambridge: Cambridge University Press. Nelkin, D. & Lindee, M.S. (1995) The DNA Mystique: The Gene as a Cultural Icon. New York: Freeman. Nerlich, B., Johnson, S., & Clarke, D.D. (2003) The First Designer Baby: The Role of Narratives, Clichs and Metaphors in the Year 2000 Media Debate. Science as Culture. 12(4) 471-498. 14

New Scientist (13th October 2007) 2625: p4 UK changes position on animal-human hybrids. Oakely, A. (1984) The Captured Womb: A History of the Medical Care of Pregnant Women. Oxford: Blackwell. Patton, M.Q. (2002) Qualitative Research and Evaluation Methods (3rd Edition) London: Sage Publications. Pope, C & Mays, N. (2006) Quality in Qualitative Health Research. In Pope, C. & Mays, N. Qualitative Research in Health Care. Oxford, Blackwell Publishing. Potter, J. (1997) Attitudes, social representations and discursive psychology. In Wetherell, M (eds) Identities, groups and social issues. London: Sage Publications. Richards, M.P.M. (1993) The New Genetics: some issues for social scientists Sociology of Health and Illness 15(5), 567-586. Riechert, B. (1995) Science, society and the media: associated press coverage of the Human Genome Project. Paper presented to the 18th Annual Communication Research Symposium, University of Tennessee, March. Cited in Andersen, (2002). Shakespeare, T. (1995) Back to the future? New genetics and disabled people. Critical Social Policy. 15(22) 22-35. Stainton Rogers, W. (2003) Social Psychology: experimental and critical approaches. Berkshire: Open University Press The Guardian (February 28th 2007). Chief advisor backs human-animal embryos opposed by ministers. Tizzard (2002) Designer Babies: the case for choice. In Lee et al (2002) Designer Babies: Where Should We Draw the Line? London: Hodder and Stoughton. Wilmut, I., Schnieke, A.E., McWhir, J., Kind, A.J. & Campbell, K.H. (1997) Viable offspring derived from fetal and adult mammalian cells. Nature 385, 810 813.

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