The “conflict of conflicts”: Human Reproductive Cloning and the · 2014-05-07 · The...

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The “conflict of conflicts”: Human Reproductive Cloning and the Creation of New Citizens 1 Barbara Prainsack Department of Political Science University of Vienna, Austria Universitätsstraße 7 A-1010 Wien / Vienna Austria Phone: 0043-1-4277-47737 0043-650-9259723 E-mail: [email protected] Paper prepared for the ECPR Joint Session of Workshops 2006, workshop: The Comparative Dynamics of Problem Framing: How Science and Power Speak to Each Other (directors: Arco Timmermans and Christoffer Green-Pedersen) 1 I am grateful to the following individuals for valuable comments on (parts of) this draft: Dona Davis, David Gurwitz, Yael Hashiloni-Dolev, Helga Isak, Merav Katz, Ingrid Metzler, Gísli Pálsson, Matt Ratto, Carmel Shalev, and Hendrik Wagenaar. Some quotes of interviewees and discussions of anti-cloning arguments in this paper were taken out of an article on twins and human reproductive cloning that I wrote with Tim Spector (see Prainsack & Spector 2006). We are grateful to our interviewees and to the entire staff of the Twin Research and Genetic Epidemiology Unit at St. Thomas´ Hospital in London for making this project possible. The TwinsUK project receives funding from the Wellcome Trust and the CDRF. 1

Transcript of The “conflict of conflicts”: Human Reproductive Cloning and the · 2014-05-07 · The...

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The “conflict of conflicts”: Human Reproductive Cloning and the

Creation of New Citizens1

Barbara Prainsack Department of Political Science University of Vienna, Austria

Universitätsstraße 7 A-1010 Wien / Vienna

Austria

Phone: 0043-1-4277-47737

0043-650-9259723

E-mail: [email protected]

Paper prepared for the ECPR Joint Session of Workshops 2006, workshop:

The Comparative Dynamics of Problem Framing: How Science and Power Speak to Each Other

(directors: Arco Timmermans and Christoffer Green-Pedersen)

1 I am grateful to the following individuals for valuable comments on (parts of) this draft: Dona Davis, David Gurwitz, Yael Hashiloni-Dolev, Helga Isak, Merav Katz, Ingrid Metzler, Gísli Pálsson, Matt Ratto, Carmel Shalev, and Hendrik Wagenaar. Some quotes of interviewees and discussions of anti-cloning arguments in this paper were taken out of an article on twins and human reproductive cloning that I wrote with Tim Spector (see Prainsack & Spector 2006). We are grateful to our interviewees and to the entire staff of the Twin Research and Genetic Epidemiology Unit at St. Thomas´ Hospital in London for making this project possible. The TwinsUK project receives funding from the Wellcome Trust and the CDRF.

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First draft: Please do not quote without permission of the author

Now you´re a clone, With heart of stone, Synthetic soul, Brainwashed and cold. You´re just a clone, Got no control, Forced in a mold, Processed and sold. Hey, you know I find it frightening, How you change just as fast as lightning. [Beginning of the lyrics of “Clones”by the Irish band Ash]

Abstract

1. Introduction: Reframing human reproductive cloning

The topic of human reproductive cloning (HRC) has spurred human imagination for decades.

Mostly, the products of this imagery were dark and ominous portrayals of megalomaniac

scientists unleashing catastrophe (Nerlich & Clarke, 2003; Hopkins, 1998; Battaglia, 1995).

In public representations, clones are usually depicted as helpless and soulless victims of

human vanity. Whereas embryonic stem cell research and so-called “therapeutic” or

“research” cloning has been a controversial issue spurring a wide range of different positions

and regulatory strategies across the globe for almost a decade, reproductive cloning (the

production of a fully fledged human being by means of means of somatic cell nuclear transfer

[SCNT2]) was uniquivocally condemned as unethical by all governments and international

organizations concerned with the issue (except Israel – see below).3 Habermas´ (2003) claim

2 “Somatic cell nuclear transfer” entails the transfer of the nucleus of a somatic cell into a denucleated ovum, thereby replacing the genetic information of the original germ cell with the genetic information of an already existing individual. 3 See, for example, UNESCO´s Declaration Universal Declaration on the Human Genome and Human Rights, 1997; The European Council´s Bioethics Convention, 1997; The Charter of Fundamental Rights of the European Union; and various national prohibitions.

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that human cloning is unethical because of the inherent instrumentalization of human beings

and the irreversible distortion of the social and generational relationships had become a

frequent point of reference for ethicists, anti-cloning activists, and politicians alike.

Recently, however, the consensus that reproductive cloning must be banned under all

circumstances has become shaky: Bioethicists have started to question that cloning would be

unethical in all cases (Strong 2005), and an increasing number of public voices suggest to

leave open the option of allowing human reproductive cloning if the procedure has become

“safe” (see for example Harris 2004).

This development can be interpreted as a decrease in effectiveness of the boundary work

among policy makers, scientists, and bioethicists. For a long time they had successfully

distinguished some fields of “potentially good” research (depending on the context and

purpose in which it is conducted), such as embryonic stem cell research, from fields of

research which is “intrinsically immoral” (unethical in principle; see Prainsack 2006), such as

HRC. Reproductive cloning had also served as a “safety net” for propagators of embryonic

stem cell research because they could use it as an example of “unethical science” in order to

contrast it with “ethical science” and thereby establish themselves as ethical subjects.

The decreasing effectiveness of this boundary work results from a shift in the framing of the

very object of the biothical debate about HRC. An intense discussion of HRC had started with

the birth of the first cloned mammal Dolly the Sheep in 1997, which instigated immediate

suspicions about the imminent creation of human clones.4 Concerns which Habermas (2003)

discusses in his book on The Future of Human Nature have for a long served as a

hegemonical frame for HRC. Habermas´ main argument is that HRC must be prevented

bcause it would irreversibly distort the relationship between producers (the parent generation)

and the produced (the “clones”; see also Habermas 2001, 170-1). Furthermore, nobody should

have the possibility to perform an act as invasive and irreversible as determining somebody

else´s genome without the latter person´s informed consent. Leon Kass, the former chairman

of the U.S. President´s Council on Biothics, even regarded repugnance - which he claimed

that people feel in light of HRC - as “the emotional expression of deep wisdom, beyond

reason´s power to fully articulate it”, and compared it to crimes such as “father-daughter

4 According to a poll taken by Time/CNN on February 26 and 27 1997, ninety per cent of Americans felt that HRC should be banned as early as a week after Dolly´s birth. The results were published in Time on 10 March 1997. See also Silver 1998: 168 (and footnote 1).

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incest [...], or having sex with animals, or mutilating a corpse, or eating human flesh” (Kass

1997: 18-19). The General Assembly of the United Nations, in its “Declaration on Human

Cloning”(UN-GA, 2005) called for national governments to ban human cloning because it is

seen as “incompatible with human dignity” (paragraph a). The main arguments of what I call

the first generation frame of HRC can be summarized according to three main themes which

partly overlap:

1. Interfering with nature. Proponents of this argument focus on the claim that human

reproductive cloning (HRC) would represent an act of interference with the “nature”

of reproduction and creation. The “playing God”-argument is a variant of this claim

(for discussions, see Bartlett, 2005; Evans, 2002).

2. Human dignity. The principle rejection of HRC bases upon the fear of duplicating

genetic traits (due to a fear of eugenics - only “good” traits will be duplicated -, or

“cloning armies of soldiers” [The Wellcome Trust, 1998], etc). Often, this argument is

accompanied by the claim that the production of a human being genetically identical

to another, already existing human being would violate human dignity (discussed in

Burley & Harris, 1999; Harris 2004) and/or that cloning would deprive the cloned

individual of the “right to an open future” (discussed in Kuhse 2001; Feinberg 1992;

Evers, 1999). Furthermore, some authors contend that HRC would “commodify”

children, or instrumentalize them (see Meilaender, 2002).

3. Social relations. The third line of anti-HRC reasoning focuses on the fear of an

irreversible change in the relationship between the “produced” (the cloned person, the

clonee) and the “producers” (the social parent[s] and/or the progenitor parent of the

clonee), because the latter would have the power to irreversibly determine the genetic

traits of the former (Habermas, 2003). This claim is often intertwined with the

assumption that HRC would confound social relationships (O´Neill 2002).

Towards the mid of this decade, the framing started to shift. Bioethicists started to examine

the anti-HRC claims in more depth and often concluded that the rejection of HRC was based

upon unsound presumptions. For example, they criticized the underlying genetic determinism

in the claim that HRC would compromise individuality and/or infringing human dignity – an

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aspect which the Israeli molecular geneticist and member of the UNESCO´s International

Bioethics Committee Michel Revel (1998) had been empasizing since the beginning of the

cloning debate: We can only maintain that HRC would compromise the potential clone´s

individuality if we equal human beings with their genes (see also Caulfield 2001). John

Harris´ (2004) book On Cloning, as well as Levick´s (2004) work on the topic represent

manifestations of a much more nuanced view on HRC, and one which increasingly

emphasizes the reproductive aspect of potential HRC applications instead of the inherent

characteristic of duplication. In short, despite prominent voices which still insist on the

fundamental immoral nature of HRC, it is being increasingly reframed as “just another

technology” with potential advantages and potential hazards (second generation frame of

HRC).

However, claiming that HRC is increasingly accepted by the general public would be

premature. There is a large gap between expert5 discourses and public representations of and

attitudes towards human cloning, of which opinion polls, movies6 and internet postings are

telling examples. The non-specialized public, it seems, is as much tied into Frankenstein

images and fears of dictators cloning armies of soldiers as many decades ago.

In the following sections, this paper will examine the reasons for this cloning-fear and discuss

their implications for policy making. Drawing upon a series of qualitative interviews with

identical twins conducted in fall 2005 I will first show that for an understanding of what really

is at stake in the cloning debate can not be obtained without an inclusion of the embodied

experience and experiential knowledge (Borkman 19767) of people. Second, I will argue that

images of HRC expose a deep lying fear of the destabilization of what it means to be human.

On the one hand, this fear manifests itself in the problematization of the complex of

reproduction (as HRC is a modus of “asexual” reproduction which does not entail the fusion

of an egg and a sperm), which is apparently regarded as one of the core constitutive factors

for humanness. On the other hand, this fear also relates to a deconstruction of traditional

notions of individuality and the autonomous citizen. Therefore, a discussion of regulatory

aspects of HRC represents a “conflict of conflicts” (Schattschneider 1960) insofar as it is not

5 My use of the term “expert” in this paper includes everybody who deals with HRC professionally, such as bioethicists, specialized policy makers, and scientists) 6 A recent example for such a movie is “The Island”, in wich the main characters are artificially produced clones of ruthless rich people. The latter spend large sums of money to have spare body parts and pregnancy surrogates readily available. See http://www.imdb.com/find?s=all&q=the+island. 7 Highly relevant in this context is also the work of Frank Fischer.

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only a debate about the limits of individual agency and individual choice vis-a-vis the

collective, but it also problematizes the basic unit of civil action, the autonomous individual.

This raises questions such as: Where are the limits of the citizen, literally speaking? Is society

allowed – or even mandated – to protect boundaries which are seen as “changing the ethical

self-understanding of the species in such a way that we may no longer see ourselves as [...]

morally equal beings guided by norms and reasons” (Habermas 2003:4)? A fruitful discussion

of regulatory aspects of HRC must understand itself as dealing with a constitutional issue in

the sense that it is concerned with fundamental categories which enable the conceptualization

of social and political interaction. The addressees of such “regulation of fundamentals” is the

sum of all actors, those who are currently living, and those who will be born, like in

Rousseau´s and Rawl´s famous examples.

2. Cloning: What “identical” twins say

In discussions of the ethics of HRC, one aspect has been missing almost entirely: The

embodied experience (see Davis & Davis, 2005) of “clones”. Drawing upon the work of

Merleau-Ponty (1962), the notion of embodiment is specifically concerned with the lived

experience of one´s body in particular cultural, social, and historical contexts. Instead of

conceptualizing bodies as fixed entities, it takes into consideration the dynamic nature of

bodily identities and the interconnectedness of subjective and objective experiences of

embodiment (see also Csordas 1994). Whereas it is obviously impossible bring in the

embodied experience of cloned human beings, there is one scenario of “naturally” conceived

human beings which comes as close to a HRC scenario as one can get: monozygotic twins.

Identical twins, as they are usually referred to in non-medical contexts, usually stem from the

same fertilized egg and therefore are 100% genetically identical.8 Despite the differences

between identical twins and clones produced through SCNT,9 the experience of identical

8 Therefore, identical twins are “more” genetically identical than many clones would be. This is because in a cloning scenario, if the donor ovum came from a different person than the somatic cell, the mitochondrial DNA in the cell mass of the donor egg would add to the genetic information of the nucleus in the somatic cell and result in a person who is genetically virtually identical with the donor of the somatic cell but also carries a very small amount of genes from the donor of the ovum. 9 There are three obvious differences between „naturally“ conceived identical twins on the one hand, and clones produced through SCNT and implantation on the other: a) “natural” identical twins are a product of chance, while clones would be a product of a conscious activity by humans; b) the number of identical twins is limited by the number of embryos a woman can carry to term, while the number of potential clones would be (theoretically) unlimited; 3) identical twins have two biological parents, while the situation in case of clones would be more complicated: Clones would have a progenitor parent from which the somatic cell was taken and with whom they “share” their genetic makeup; in addition, they would also have a gestational mother and a (set

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twins can shed light on questions such as: To what extent do genetically identical individuals

perceive themselves to be a result of their genes? Would it make a difference to them if they

had been deliberately created as genetically identical by their parents? Does the fact that their

“clone-status” is due to chance, and not to choice, mean anything to them? And, how would

they feel about having a “twin” (somebody with the same genome) who was born a few years

earlier or later?

I conducted 17 interviews with identical twins, dizygotic (non-identical, or fraternal) twins,

and singletons,10 in order to understand how human beings who are “natural clones” (BBC,

1999; see also Segal, 2000: 206) think and feel about HRC. Although the findings of this

survey are not representative for identical twins word wide, they provide interesting insights

with regard to the ongoing expert debate on the ethical issues and regulatory aspects of HRC.

First of all, it turned out that in the experience of our identical twin interviewees, the genetic

component was virtually meaningless for their understanding of closeness and connectedness.

Half of our respondents said that they had never conceived of their relationship in genetic

of) social parent(s). All these functions can overlap (depending on whether or not the ovum stems from a different person than the somatic cell, etc). 10 I conducted semi-structured narrative interviews with seven pairs of MZ twins and four pairs of DZ twins from the TwinsUK registry at the Twin Research and Genetic Epidemiology Unit at St. Thomas´ Hospital in London, UK (www.twinsUK.ac.uk). An additional interview was conducted with a female DZ twin whose sister could not be interviewed. Because the UK sample did not include DZ twins of different sex, a male person with a female DZ twin sister was interviewed in Austria three weeks later. Three non-twin siblings, who were out-patients at St. Thomas´ Hospital Rheumatology Clinic, were interviewed as part of the control group. This amounts to a total of 17 interviews with 27 individuals which lasted between 20 and 90 minutes. The interviews were transcribed and analyzed. The entire research process was guided by principles of the Grounded Theory approach (Glaser & Strauss, 1967). The interview questionnaires were developed according to Weiss (1994) and consisted of three categories of open-ended questions: part A concerned the family background, upbringing, and the life-course of our interviewees; part B focused on the relationship of the respondents to their twin sisters and brothers; and part C confronted the respondents with several “thought experiments” about the use of new medical technologies and cloning. The use of the word “cloning” was usually avoided, in order to prevent respondents from reacting to the media coverage of the topic instead of drawing upon their own experiences. The questionnaires for non-identical twins and singletons were adjusted versions of the questionnaires for MZ twins. All respondents signed informed consent forms prior to the interview. All but the the Austrian respondent were registered in the TwinsUK database at St. Thomas Hospital. All but one (Jewish) respondent were North European Caucasian Christians; only three out of 27 respondents considered their religious beliefs “very strong”; the self-assessments of others varied between “not religious at all” and “somewhat religious”. All names and possible identifying information (such as names of places, exact age, etc) of our respondents were changed. The research design has an obvious limitation as all but one of our interviewees live in the UK. Therefore, I cannot assess to what extent attitudes and opinions about future genetic technologies are culturally determined. In addition, all but three interviewees were female, which might impact on the attitude to medical technologies in general (as women are believed to be more skeptical of new medical technologies than men; see Napolitano & Ogunseitan, 1999). The fact that all but one of our twin respondents were already registered in a twin research database could bias the sample insofar as it might hint to a more positive experience and understanding of twinship in our research sample as compared with the general twin population. For a paper-length discussion of the findings of this study, see Prainsack & Spector 2006.

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terms; and those who said they did had often started doing so after they had enrolled in twin

research studies. None of our interviewees said that “sharing genes”, or being genetically

identical, was a bad thing. They either did not evaluate it at all (like June: “I don´t think about

that sort of stuff” [I 16]), or they reacted positively, such as Saffi: “As I saw things on the

television about genes, and, you know, it made me realize that I was lucky to share my genes

with [twin sister Alexis]” (I 4).

Our evidence clearly refutes the argument that the creation of genetically identical human

beings would be immoral or unethical because of their genetic identity. Nevertheless, the

majority of our respondents did say that they felt there was something wrong with the idea of

either one of the twins being born earlier or later than the other. Their reasons were either that

they felt that they would be compared to each other (and fail to live up to their parents´

expectations), or that they would be missing something if they had not had the opportunity to

go through life with each other. Most of all, however, it was the suspicion that there would be

an ulterior motive involved in the process of their creation in a “belated twin” scenario that

made our interviewees feel uncomfortable with the thought. This latter point seems to support

Habermas´ argument that HRC would confound social relationships. What the embodied

experience of twins adds to Habermas´ claim about the distortion of the relationship between

producer and produced is that whether or not people whose genome was determined by their

“producers” would hold it against them would depend on whether or not they liked the

motives that had lead to the action (see also Calnan et al 2005). Being created by choice as

such was not rejected as an unethical scenario.

The most important insight, however, was that the most prominent arguments against HRC,

namely those claiming that HRC would contradict nature, or representing and instance of

“playing God”, hardly came up in our interviews. If they appeared in the conversation, it was

always in response to abstract questions, such as whether or not parents should be allowed to

determine their future children´s genes, or when asked what medical technology should be

prohibited by law. Only three respondents, none of whom was an identical twin, mentioned

the theme of “interfering with nature”, or “playing God”, in connection with cloning. The

statement that cloners would assume the role of the creator was not made at all. Referrals to a

divine plan were often made to emphasize that a certain procedure was not against God´s

will. For example, Karen, an identical twin of 73 who considers herself as religious,

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explained: “One could say that He has allowed this… If He has put it into people´s minds to

be able to do this, perhaps it´s His way” (I 7).

Some respondents objected to the idea of allowing people to decide about the genetic

characteristics of their potential children, and mentioned the “interfering with nature”

argument in this context. Emma, for example, an identical twin of 36, referred to nature when

asked whether parents should be allowed to decide how they have their children: “People

could choose to have identical or non-identical twins? No, one should let nature take its

course” (I 12, emphasis added). The continuation of the conversation with Emma and her

twin sister, however, took an interesting turn. When asked what they would have thought if

they had been born as a singleton but if their parents had loved one of them so much that they

had decided to have another child genetically identical to her, Emma and Amanda suddenly

wavered:

Amanda: “I would say no. I think it´s odd to me. Because that´s human cloning in a

sense, isn´t it?” […]

Emma: “Because you know, even though we´re identical twins, we´re very individual.”

Amanda: […] “The poor child would always be compared. […] The positive of one of

them would always be compared to the negatives of the other.” […]

Emma [to her sister]: “But how would you know? You never know unless you are in

that situation!” (I 12)

Emma “breaks” the abstractness of the topic by stating that one cannot really know if one has

not experienced a situation oneself. She implies that embodied experience in connection with

a particular topic renders a person competent to make a valid argument in the debate on that

topic. An abstract theoretical discussion about a cloning might be useful, but: You never

know unless you have been in that situation!11

The “interfering with nature” and “playing God” arguments seem to be examples for

considerations which disappear as soon as embodied experience comes in. Our respondents

11 On the other hand, Emma´s suggestion that one cannot “know” what a situation is like if one has not experienced it, could also be interpreted in the sense that MZ twins will never “know” what it is like to be a “clone” (through SCNT) because they have not “been in the situation”. This, of course, is true. However, as this section focuses on the embodied experience of being genetically identical, the relevant characteristics of a monozygotic twin experience and the experience of a potential clonee with regard to that aspect are similar enough to draw conclusions from one for the other.

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mentioned nature, or referred to a certain technology or procedure as being against God´s

plan, only when they were confronted with abstract scenarios or questions such as: “Should

parents be allowed to determine the genes of their children?”, or “Should cloning be

prohibited?” When given a concrete description of a HRC scenario which entailed some

characteristics of their own life-worlds, their answers became much more complex.

Also our non-identical twin respndents were less negative about HRC when they were

confronted with a concrete HRC scenario. Mildred and Elsa, fraternal twin sisters aged 61,

disagreed about whether or not it was right for Elsa to consider “replacing” her deceased

daughter:

Elsa: “I would, if it wasn´t illegal.”

Mildred: “But I would not. […] Would you want another baby to be similar to the one

that´s gone?”

Elsa: “Yeah, I think so…I said I´d think about it. […] It´s not the same person, only

the body. (I 5)

At a concrete level, all of our respondents had a very good understanding of the difference

between having the same genes and being the same person. In addition, we found no

indication that in the views of our respondents there was anything more “unnatural” about

human cloning than about twinship. Both is (or would be) very rare, with all its positive and

negative consequences.

What our insights from the interviws with twins showed first and foremost is that an expert

debate on ethical and regulatory aspects of a biomedical topic can be irrelevant to “normal”

people if it does not emerge bottom-up, meaning in close connection with daily practices and

experiences of those (actually and potentially) concerned. The experience of our respondents

with being “genetically identical” suggest that what scares people about HRC is a deeper

lying fear of a process that will be discussed in the next section.

3. The “conflict of conflicts” and the creation of new citizens

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Briefly put, what seems to be at stake in public fears of human cloning is not so much the

compromised human dignity of potential clones, the fear of the consequences of illegitimately

assuming the role of the creator, or a grounded fear of a confusion of all social relationships.12

Our interviews with twins, as well as a preliminary evaluation of 500 quantitative

questionnaires sent out to individuals in the TwinsUK database [Prainsack, Spector &

Cherkas 2006]; for questionnaires, see appendix), suggests that reasons for lay people (in our

case, mostly twins) to oppose HRC focuses on the theme of destabilizing humanness. This is

not a new insight as such. Previous work on public respresentations of cloning and clones

(see, for example, Nerlich and Clarke 2003; Battaglia 1995) has alrady hinted to this issue.

Furthermore, the first known story about an attempt to create a human being asexually, the

story of the Golem, also touches upon this theme: The Golem is an entity of human shape, but

it is lacking a soul. It is a formless mass, “human in shape but not in essence” (Sherwin 2000:

63).13 The Golem behaves like a human but his humanness is unclear; he is one who from the

outside looks like a human but at the inside might be something else.

12 The social and societal impact of the emergence of “patchwork families” and IVF-babies, both mass phenomena, is probably much more significant to society as a whole than creation of some hundreds of clones would be. 13 There are a number of medieval legends about the Golem. In the 20th century, the legend was studied and retold by a famous scholar of Kabbalah, Gershom Scholem. According to him, the Golem story originated in “The Book of Creation” (Sefer Yetsirah), which was written some time between the 3rd and the 6th century CE, and which is referred to in the Talmud (Sanhedrin 65b. See Shalev 2000: 216). The core content of the story is that a human-like being was created by humans in order to serve them. In some versions, the creation of the Golem entailed meditation on all possible combinations of the 22 letters of the Hebrew alphabet. On the Golem’s forehead, it carried the Hebrew phrase “The Lord God is truth (“truth” = [emet] Once the Golem became .”(אםת vital, it took a knife and carved out the first letter of the last word of the phrase, thereby changing it into met )םת ) which means “has died” - “the Lord God has died”. In other variants of the story, the Golem became taller

and bigger every day, so that eventually its master removed the first letter from his forehead and thereby made the Golem collapse and return to clay. The story was commonly interpreted as a warning for humans not to forget the divine creator over acting as creators themselves. It is not, nevertheless, meant to imply that humans should not act as creators at all. As Byron Sherwin stated,

Whereas other religious traditions have considered the creation of artificial beings by human beings to be demonic, Jewish tradition embraced, and even encouraged, such creative activity. The talmudic account of the creation of an artificial man and an artificial calf is reported in a matter-of-fact manner. It is surprisingly never subjected to the dialectic analysis characteristic of talmudic debate and disputation” (Sherwin 2000: 64-65).

The Israeli lawyer and bioethicist Carmel Shalev contends that the Golem story is likely to tell us a lesson about our own fears, rather than about what is ethically permissible:

It is not that our discoveries and creations actually get out of hand and turn against us to destroy us, but that we are morally troubled by the power of our own minds and have need for internal restraints upon our own actions. (Shalev 2000: 219. Emphasis added)

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It is this “being something else” at a hidden place on the inside which symbolizes

compromised humanness. In the realm of human fears, namely in movies, literary fiction and

religious myths, not everybody who looks like a human being also really is one. For a long

time, the definition of everybody born by a woman being a human being served the purpose

to draw the line between “inside” and “outside” (the Golem, according to this definition, is

not human. His intrinsic evilness supports the social necessity of this claim). Nowadays, this

criteria has become impractical. Since genetic and new reproductive technologies have

enabled us to modify and manipulate ever smaller components of life, the female womb has

become an unreliable indicator. As not only humans but also “technology” and “science”

implant their seeds in a woman´s uterus, the outcomes are always suspicious of being hybrids.

As the Catholic priest Father Saunders claimed shorty after the birth of Dolly the Sheep:

“Cloning would only produce humanoids or androides – soulless replicas of human beings...”

(quoted in Silver 1998: 169; see also the online version of the Arlington Cahtolic Herald

http://www.catholicherald.com, 19 May 1997).

In this context, it is interesting that in our own quantitative survey of “lay” attitudes towards

cloning, 42% of our twin respondents agreed (points 2 and 3 on scale: 17%) or even strongly

agreed (point 1 on scale: 25%) to the statement that they “oppose human reproductive cloning

as it does not involve the joining of an egg and a sperm”. Only 17% were in strong

disagreement (Prainsack, Spector & Cherkas 2006).14 What seems to be crucial for the

characteristic of humanness in this context is not, as many participants in the bioethical debate

claim, the genetic dimension (represented by the claim that the human genome, and the

genomes of individiual people, should not be manipulated; see, for example, Fukuyama

2002), but the particular way in which a human being came into existence. In other words, the

best way to guarantee the humanness of an individual is the absence of any technological

intervention in the way s/he was created.15

Twins studies offer us another important insight which touches upon the conceptualization of

the fundamental unit of social and public life in liberal democracies, namely the autonomous

individual. This is relevant to HRC not because like identical twins, potential clones would

have the rare characteristic of being genetically identical to another human being. The

14 46% were in agreement (points 1-3 on scale) with the statement that “human cloning should never be allowed”, while 33% disagreed (points 5-7 on scale; see Prainsack, Spector & Cherkas 2006). 15 This, however, does not imply that the humanness of everybody who was created with the help of (medical) technology (such as so-called “IVF babies”) is automatically compromised.

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property of genetic sameness seems to instigate the fear in many people that the autonomy

and/or individuality of the person(s) in question is compromised. This outsiders´ perception

was the one major disadvantages that our twin respondents16 described when asked about the

benefits and downsides of their twinship. Our respondent Gabriella, a non-identical twin, said

she “would have hated” to be born an identical twin. Why?

Because I believe in your own identity, you know? You´ve got this other person who

looks like you... […] I find this a bit too sickly, you know... They´re dressed the same,

they´ve the same mates... No! It doesn´t seem as if they have their own identity! […]

There´s something unnatural about identical twins [laughs]. (I 8)

Whereas in the conventional understanding, “healthy” and “uncompromised” individuality

manifests itself in being autonomous and visibly unique, the self-understanding of many twins

seems to be differerent. Many of our twin respondents had both: The feeling of total

individuality, and “being the same” as one´s twin brother or sister, (“I just know that we are

the same”, Jennifer, I 1) existed simultaneously. 19 year old identical twin sisters Jessica and

June, for example, who to an outsider looked and behaved very similar, repeatedly

emphasized that they were “just like normal sisters”, and that they were very different from

one another. Nothing hinted at any problems in developing individual identities.17 On the

other hand, however, they also said that nobody but identical twins could ever understand

what it means to be identical twins, and that they do almost everything together (including

studying in the same program at the same college, I 16). The case of Gerald and Rick,

identical twins aged 38, is very similar. While on the one hand they pointed out that they were

happy to lead separate lives (because they had been “pretty much married to each other”

[Rick, I 13] and lived under one roof until the age of 24) and behaved differently to such an

extent that it was easily discernable for an outsider to tell them apart, they constantly referred

to themselves as a unit. While outsiders often emphasize differences between identical twins

16 Interestingly, not only our identical twin respondents complained about this problem, but also non-identical twins who looked very different from each other. Apparently it is not only physical likeness but also the performance of close social connectedness (such as wearing the same clothes and going places together in the case of non-identical twins) which gives observers reason to suspect compromised individuality. 17 For example, this is what June told me when I asked them whether there had been any jealousy between the sisters: “I used to always wish that maybe I was a bit more like her sort of thing. I always wished I had a bit more of her personality than my personality. And I´ve gone through stages when I wished I looked more like her, because we don´t feel that we look anything like each other.” (I 16)

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in an antagonistic manner (“the strong twin” vs. “the weak twin”, etc), Gerald and Rick

referred to these different characteristics as complements.18

Alexis and Saffi, identical twins of 32, live together in one house with Alexis´ husband and

children. In Alexis´ response to my question about when they had been separated for the first

time in their lives, the ambivalence about the hegemonical societal understanding of

“accurately” developing into a fully separate(d) (and literally disconnected) individual on the

one hand, and the sisters´ understanding of themselves as both separate and connected on the

other, becomes apparent:

Alexis: “[...] We got separated probably in the last year of the secondary school...”

Saffi: “Yes.”

Alexis: “Which was terrible.”

Interviewer: “Why did you get separated at all?”

Alexis: “Because the school [said] that it was beneficial for our education as well

as our identity to be separated, you know, for us to go our own separate

ways which was horrendous, wasn´t it really?” (I 4)

This is how Saffi and Alexis describe their relation to each other and to other people:

Saffi: “[...i]t´s like we all have our own little bubble but when we are together we have

a double bubble.”

Alexis: “Yeah. Our bubble comes together and becomes one. You have got your bubble,

we have each got ours but when we are together it creates one big bubble which

when we are walking around that bubble touches people. I can´t explain it...”

(I 4)

This phenomenon can help to understand why twins are sometimes seen as “weird” or

“freaky” by non-twins (which was also apparent in our study). Elisabeth Stewart, in her book

Exploring Twins, interprets phrases

such as `I am a twin´ or `Oh, you are twins, are you?´ [as] statements about lack of

individuality and lack of autonomy (`You/We Two are One´). As such, they involve 18 “That´s what made a [us] great team because he had his sort of softer qualities and I had my harder qualities if you like. Together they were actually... we were successful” (Rick, I 13).

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performative requirements at odds with an (interactive) focus upon actors as

individuals, as independent actors, as autonomous members of a variety of

collectivities.

(Stewart 2003: 155)

The self-understanding of twins as being both connected and separate, both dependent and

well-functioning (as opposed to seeing strong dependence on a particular person as a

potencial deficiency), challenges traditional concepts of autonomy not only in contemporary

culture. While Evans-Pritchard (1967) speaks of twins being both single and dual,19 our

observation is that many twins perceive themselves as neither single nor dual. Twins who

think of and about themselves in this manner are the living example not of their own inability

to develop into sufficiently autonomous and indipendent individuals, but rather of the

inability of contemporary concepts of human agency to cover all forms of (non-pathological)

human identities. Turner captures this dilemma very nicely when he claims that “[...] twinship

presents the paradoxes that what is physically double is structurally single and what is

mystically one is empirically two” (Turner 1969: 45; see also Schapera 1927 and Stewart

2003: 25).

Why is this relevant to how public reactions to HRC hint at a fear of the destablization of

humanness? Because like many twins who “scare” people because of their closeness and

likeness but still cannot be seen as pathological or “deficient”, the idea of clones – due to their

genetic sameness – jeopardizes conventional understandings of what human beings not only

as social but also as political actors should be. In her analysis of the debate on HRT in the US

of the early 1990s, Debbora Battaglia summarizes that “[i]ndividuality was presented as a

given rather than a constructed or situationally experienced human value, threatened in the

view of critics...” (Battaglia 1995: 674). One of the most illustrative manifestations of this

fear is the image of individuals literally cut in half, as in the words of Germain Grisez,

professor of Christian ethics in Maryland: “The people doing this [HRC, BP] ought to

contemplate splitting themselves in half and see how they like it.” (Time, November 8, 1993.

Quoted in Battaglia 1995: 674).

19 “Their single social personality is something over and above their physical duality, a duality which is evident to the senses and is indicated by the plural form used when speaking of twins and by their treatment in all repsects in ordinary life as two quite different individuals” (Evans-Pritchard 1967: 134; quoted in Stewart 2003: 13).

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Battaglia connects this also to the debate about new biomedicine and biotechnology in

connection with property rights:

From this shared perception that the forces of bio- and information technologies were

holding sway, it followed that the notions of both a God-made and a naturally made

man (gender noted) were destabilized where they lived: namely in the positive cultural

value ascribed to a physically embodied and authentic individualty.

(Battaglia 1995: 675)

4. HRC and agenda setting – implications for policy making

The topic of HRC has already been on the agendas of policy makers on national levels as well

as the international level. However, policy making processes have not entailed any substantial

deliberations on potential benefits vs. potential harm of the technology. Rather, as stated

above, HRC has served as a boundary object to distinguish “good” (potentially ethically

permissible) from “bad” (morally intrinsically wrong) applications of medical research and

technology. Consequently, no government in the world openly declares itself in favour of

human reproductive cloning; many national legislators have issued bans on the procedure.

Israel, which is presently the only country in the world (among those regulating HRC) which

declares no opposition to HRC in principle, currently bans the precudure by means of a

moratorium (until 2009; see Prainsack 2006). The central argument for prohibitions of HRC,

namely that it would compromise human dignity, cannot be maintained either in the human

dignity framework of the bioethical discourse (because the dignity of the potential clone

would be as intact as the dignity of any other “naturally” conceived individual; see Evers

1999; Elliott 1998) or in connection to the embodied experience of people who are genetically

identical, as shown above. In this light, it is hardly surprising that the boundary work to

separatate HRC from other contested but “potentially permissible” technologies has

eventually proven inefficient. The undercurrent in the reasoning of policy makers for banning

the procedure is the need to limit individual human agency in light of unforseeable harm

resulting from it.20 But what would be the potential harm, and why should it be seen as grave

20 This is spelled out very clearly, for example, in the (current U.S.) President´s Council on Bioethics paper on Human Cloning and Human Dignity (PCB: xxix): “´Cloning-to-produce-children would affect not only the direct participants but also the entire society that allows or supports this activity. Even if practiced on a small scale, it could affect the way society looks at children and set a precedent for future nontherapeutic interventions into the human genetic endowment or novel forms of control by one generation over the next”. See also Rifkin (1999).

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and widespead enough to justify the setting of a limit to individual freedom? Looking at

(national and international) anti-HRC laws does not bring enlightment in this respect. Most

laws and regulations resort to empty signifiers such as “human dignity” or “morality”. Taking

into consideration the experience with and of “lay” reactions to cloning scenanarios discussed

above, however, can help to answer this question.

The fear of what I have called the “destablization of humanness” is closely linked to

fundamental concepts of political theory. The central agents, in enlightment and civil rights

ideologies, were human beings. Although equal rights and liberties for all human beings were

not achieved immediately, it was clear that only human beings are to be protected and

empowered as actual or potential citizens. Humanness, therefore, is and has been the implicit

precondition of civil agency and civil rights. In this sense, the question of where to draw the

limits for individual freedom presumes the existence of a fixed agent as the bearer of this

freedom. HRC, by leading to a new way of creating citizens asexually, establishes a situation

of uncertainty about the actual humanness of these “citizens”. Can somebody who was

created as the result of deliberate action, without the physical and/or genetic interaction of two

people, and without the involvement of chance with regard to his or her genetic makeup, be

seen as “one of us”?21

Questions of who is human and who is not have never before arisen in the context of public

decision making in this fundamental manner. The debate on the protection of so-called

Note that the question of whether or not policy makers should or should not ban a procedure is different from the question of whether or not a procedure is ethically permissible. Adultery, for example, would be seen as unethical by most professional ethicists as well as in the moral understanding of lay people. However, in liberal democracies, this is not seen as a strong enough reason to justify a legal prohibition, as the potential damage of such an activity on society as a whole is (commonly regarded as) to be tolerated in the name of individual freedom. 21 Cascais (n.d.) enriches the discussion on the aspect of HRC as a form of asexual reproduction with his remark that “[r]eplication has been typical of inferior organisms, largely vegetal and a few animal ones, as well as celular [sic] populations grown in laboratory cultures” (Cascais n.d.: 2). In this light, the humanness of clones could be seen as challenged by the association of their mode of coming into existence with the reproduction of low animal species. Furthermore, Bartlett points us to the prevalent representation of robots as soulless entities in which their “soullessness is combined with their inability to reproduce sexually” (Bartlett 2005: 42). Bartlett also addresses another interesting aspect related to asexual reproduction (as deviating from the model that many see as an enactment of God´s will): “[H]uman beings ought not to imitate God´s act of the orginary creation of human beings. Why not? Because the human can be created only once, in an event which has already taken place, the very event of God´s creation of the human. All stories of humans `creating´ humans (creating, not procreating or making babies) are stories, therefore, of the cration of artificial humans. Humans can `create´ only artificial humans” (Bartlett 2005: 3-4). And he continues: “If one wishes not to play God, then one must imagine in advance the possible consequences of one´s scientific work, especially when such work threatens to disfigure the human or the boundary between the divine and the human” (2005: 7). HRC entails the possible destabilization of humanness not (only) in the sense that the boundary between humans and animals and machines become blurred, but also in the sense that the very act of blurring this boundary can disfigure our understanding of existing human beings.

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“unborn life” never questioned the humanness of embryos; rather, the question in this context

was (and still is) about what stage of human development constitutes a system of human cells

as close enough to being a person in oder to render this entity worthy of the protection of

human dignity (not even the most fervent pro-choicers would claim that embryos are not

human). Whereas the embryo (for most people) is not yet a person or a fully fledged human

being, it has the potential to become one. A clone, on the other hand, whose humanness is

unclear due to the way in which it/he/she came into existence, would always remain in this

state of hybridity. A clone would be a Troyan horse: undermining “true” humanness without

being visibly discernable as posing such a threat. Maybe this is why in the minds of many

people his/her coming into existence must be banned before technological development has

become close to having remote chances of success of creating a human clone.

The second problem that HRC poses for public policy making (and which has also been

introduced above) is the challenge it poses to common concepts of individuality. Not only has

enlightment and post-enlightment political and legal theory focused on human beings as the

primary agents and bearers of civil rights and duties, it has also conceptualized them as

individuals. Elizabeth Stewart (2003) has argued that people and cultures have always been

“irritated” by twins because of their being single and dual (or, as I argue, neither single nor

dual) at the same time. However, whereas twins are a “natural fact”, appearing independent of

human choice, clones would be the results of such choice.22 Whereas choice as such is not

regarded as an improper ingredient in reproduction in all circumstances (think of pre-selected

embryos being implanted in a woman´s uterus in the course of prenatal diagnosis), the

motivations of potential cloners are generally seen as unsound because they are allegeldy

selfish and decadent.23 Why should we allow the creation of an entity who necessitates a

negotiation of the boundaries of humanness (which is a fundamental precondition to think and

act politically) and which might force us to reconsider the ideal of the separate and

autonomous individual as a norm for civil agency? Already in 1997, Gould argued that the

alarm that many people feel when confronted with the idea of HRC probably results from the

fear of humans to lose their species identity because “the aesthetic and ethical foundation of

22 One might be tempted to contest the comparability of twins with potential clones in ths context by claiming that the duality of many twins poses a threat to the traditional concept of humans as separate individuals only in the social and not in the political/civil sphere. While this might be the norm, some twins relayed experiences to us where they had been treated as a unit not only socially but also legally. Identical twin Monica told me such a story: When food was scarce during WWII and Monica and her twin sister worked in the same hospital in Birmingham, “[t]hey tried to give us one [ration] between us!” (I 7). 23 A (non-academic) website therefore even introduces the distinction between “ego clones” and “medical cloning”, see http://www.ethicsforschools.org/cloning/2060.htm.

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modern Western culture rests firmly on our belief in the distinctiveness of each individual”

(Gould 1997: 14). Is Western culture mature enough to reconsider one of its core concepts? It

could be argued that “now is not a good time”, in light of the ongoing soul-searching

triggered by murderous attacks and terrorist threats from people and organizations who

embody threats to this culture above all.

It is likely that despite the public concerns examined here, HRT will be on the agendas of

policy makers again within the next decade. Technological advancements will make a

readjustment of anti-cloning legislation necessary. In addition, it might even be the case that

experiments with human cloning in countries that do not ban the procedure might create a

need for regulating knowledge exchange, similar to the current case of embryonic stem cell

research.

Several lessons for policy making arise from the arguments presented in this paper. First,

HRC is not an ontologically new reproductive method that can be successfully disavowed by

arguing in favor of its “intrinsic immorality” (for attempts to do so see, for example, NBAC

1997). Compared to other methods and technologies of assisted reproduction, the novelty of

HRC is gradual. Every element of HRC that its opponents single out to prove that the whole

procedure would be unethical can also be found in other instances of procedures which are

already widely practiced.

On the other hand, it cannot be denied that HRC would represent a field with an accumulation

of unanswered ethical questions, such as what motivations of potential cloners should be

regarded as legitimate; how to prevent abuse of cloning technologies by for-profit enterprises,

etc. But, as in the words of an important official in the Israeli Ministry of Health, “[a]lthough

these problems can be tricky, they can be solved” (Prainsack 2006: 184).

The crucial point, however, is that despite the new and much more nuanced framing of HRC

in expert circles, public representations of HRC remain to be dominated by scenarios of

monsters and/or machines. Wheras many professional experts dealing with HRC have been

able to transcend this realm due to their focus on a case-by-case discussion of certain aspects

of HRC, “lay” reasoning about a topic tends to be a contextualized and multi-faceted way of

being engaged with the world. It entails fears and hopes as well as scientific knowledge and

personal experience. This also explains why policy makers have not counterbalanced horror

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scenarios surrounding the topic of HRC but they have often even fed them: For policy

makers, the more implicit themes that HRC touches upon are of immediate relevance, such as

the question of what contitutes humanness and where human autonomous agency begins and

ends. A fruitful policy discourse must expose and address these topics. It is expected that this

cannot be done without paying the prise of opening up even larger questions about how to

define humanness in connection with the citizen as the bearer of rights and duties. In addition,

such a “fundamental” debate on human cloning would also open up the stage for questions

about our ideal of the autonomous individual and why we are so afraid of running the risk to

conclude that it must remain a fiction – not only in the realm of clones.

HRC, without doubt, represents as a “non-political morality issue” (Green-Pedersen 2004: 4)

in the sense that the “camps” of opponents and proponents cut across party ideologies,

religious denominations, and the secular/non-secular gap. For our analysis of agenda setting,

it reminds us that regulatory issues at the surface of policy making are informed and

constituted by underlying tacit understandings of how to phrase these problems (why and how

they emerge, to paraphrase Kingdon (1995), from the “policy primeval soup”) . As the debate

on HRC shows, the question of whether or not regulation of this technology becomes an issue

(as it did become an issue in most Western countries, and it did not in many oriental and

South East Asian societies), how it is framed (primarily in terms of duplication, or primarily

in terms of reproduction?), and what movements lobby pro- and contra-positions, depends on

how particular communities understand human beings as the central agents of social and

political action, and how these agents are positioned vis-a-vis higher “authorities” (an abstract

idea of a souvereign, the government, or the Creator). While these conditions are less apparent

in mundane policy fields such as setting speed limits and regulating taxes, they must be taken

into consideration in fields that touch upon conventional definitions of “normal” human

existence, behavior, and interaction with others.

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God. Syracuse University Press. Silver, Lee M. (1998). Cloning, Ethics, and Religion. Cambridge Quarterly of Healthcare

Ethics 7: 168-72.

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Stewart, Elizabeth A. (2003). Exploring Twins: Towards a Social Analysis of Twinship. New

York: Palgrave Macmillan. Strong, Carson (2005). The Ethics of Human Reproductive Cloning. Ethics, Law and Moral

Philosophy of Reproductive Biomedicine 1(1) (March), 45-49. Turner, V. (1969). The Ritual Process: Structure and Anti-structure. London: Routledge and

Kegan Paul. Weiss, Robert (1995). Learning from Strangers. The Art and Method of Qualitatie Interview

Studies. New York: Free Press. (The) Wellcome Trust (1998). Medicine in Society Programme, Public Perspectives on

Human Cloning. London, http://www.wellcome.ac.uk/assets/wtd003421.pdf. United Nations´ General Assembly (UN-GA) (2005). Resolution Adopted by the General

Assembly 59/280: United Nations´ Declaration on Human Cloning. March 23, http://daccessdds.un.org/doc/UNDOC/GEN/N04/493/06/PDF/N0449306.pdf?OpenElement.

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Appendix A Questionnaire for interviews with identical twins (the questionnaires for non-identical twins and non-twin siblings were variations of this questinnaire and can be obtained from the author upon request): Barbara Prainsack, Tim Spector Twins and human cloning (working title) Structure of questionnaire for mz twins24 (All questions are open ended and can be followed by further questions if deemed necessary and useful) Part A: Personal details (Gender)

• I would like to know more about how you and X25 grew up together. Do you remember when you and X started to live separately? What were the circumstances that made you decide to go separate ways? (Pursue if somatic/genetic dimensions in describing sameness/difference with regard to the twin brother/sister comes up. The aim of this question is to learn about the circumstances of upbringing. How often do they still see each other? Etc)

• What is your age?

• What is your profession?

• Can you tell me a little bit about your path of education, and how you got to do what

you are doing today?

• What is your marital status?

• What is your religious affiliation?

• Would you regard yourself as a religious person? Why? / Why not?

24 The questionnaire was developed in cooperation with Hendrik Wagenaar. 25 „X“ stands for the name of the twin-brother or twin-sister of the interviewee, which will be used in the interview

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• (Ask about political attitudes – think further about how to phrase it) Part B: Genetic identity

• Have you always known that you were “identical” twins?

• In what ways are you and X different, do you think? In what ways are you similar? • Do you have the feeling that the connection between you and X is in any way different

from the connection between you and your other siblings? If yes, how?

• What does it mean to you that X was born with the same genes as you?

• People often say that identical twins have a special bond, different from that between other siblings. Would you, as an insider, agree with that?

• How would you describe the advantages of having an “identical” twin? How would

you describe the disadvantages?

• Do you remember that your parent(s) ever discussed (among themselves, or) with you, how it was to have identical twins?

• Looking back, do you have the impression that your parent(s) treated you and X

different from your other siblings?

• What would be your thoughts if you had twins yourself / yourselves? Would it make a difference to you whether you had “identical” or fraternal twins?

• I would now like to do a thought experiment with you: Let´s assume that it is possible

for parents to decide upon many different aspects and characteristics of their potential offspring. One of those characteristics would be that they could choose whether they have their children one after the other, or whether they would have identical twins, or fraternal twins. What would you think about that?

• What would you think if your parents had deliberately decided to give birth to you and

X as “identical” twins? Do you think that your parents would feel any different about you then? Do you think that you would feel different about them?

• What would your thoughts be if you were not born as a twin, but (when you were a

child) your parents liked you so much that they decided to have another child who is genetically identical to you?

• To what extent, would you say, are your experiences of being and having a twin

representative of other twins´ experiences?

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Part C: Attitudes towards biotechnology, esp. human cloning

• Let´s do a thought experiment again: If you lost a child, or another beloved person due to an accident, and you had the possibility to use that person´s DNA to create another person who is genetically idential to him or her, do you think you would consider doing it? (follow up: why)

• Do you think that people should have the right to determine their own genes, if the

medical technologies were there?

• If you could not have children through “natural” reproduction, would you consider undergoing IVF?

• Do you think that governments should subsidize treatment for infertility? Which ones?

To what extent?

• Do you think that infertility should count as a “disease”?

• Would you advise an infertile couple to try to cope with their fate and adopt a child instead of undergoing invasive and expensive medical treatments?

• (If the interviewees identified themselves as religious:) Which conduct would be in

accordance with your religious belief?

• How far should people be allowed to go in pursuit of their desire for a child, if they cannot have one “naturally”?

• Which procedures should be forbidden by the state?

• Do you think that nature will in some way “punish” people for manipulating its course?

• (If the interviewees identified themselves as religious:) Do you think that God would punish people for intervening in natural processes?

B Questionnaire sent out to 5,000 identical and non-identical twins registered at the Twins UK database (only “Modern Science” section and collateral questions are listed here): [...] F Modern Science We are interested in your views on current topics of interest. Please rate the following statements on a scale from 1 to 7 where 1 means you “strongly agree” and 7 means you “strongly disagree” (please circle the relevant number).

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NB. Infertility = the inability to conceive “naturally”, or to carry a child to term, for at least 1-2 years 1. Infertility should be classified as a disease Strongly Agree 1 2 3 4 5 6 7 Strongly Disagree 2. We should not use medical technologies to treat infertility as we are interfering with nature

Strongly Agree 1 2 3 4 5 6 7 Strongly Disagree 3. It is against God’s will to use medical technologies to treat infertility

Strongly Agree 1 2 3 4 5 6 7 Strongly Disagree 4. Parents should have the right to select their child’s genes before birth, to eliminate life threatening genetic diseases, if the technologies to do so are available

Strongly Agree 1 2 3 4 5 6 7 Strongly Disagree 5. Parents should have the right to select their child’s genes before birth, to determine traits such as height, weight and intelligence, if the technologies to do so are available

Strongly Agree 1 2 3 4 5 6 7 Strongly Disagree 6. If I lost a young child and I had the possibility to create a baby genetically identical to him/her, I would consider doing so

Strongly Agree 1 2 3 4 5 6 7 Strongly Disagree 7. Human cloning should be allowed for medical purposes e.g. to save the life of an older sibling

Strongly Agree 1 2 3 4 5 6 7 Strongly Disagree

8. I oppose human reproductive cloning as it does not involve the joining of an egg and a sperm

Strongly Agree 1 2 3 4 5 6 7 Strongly Disagree 9. Human cloning should never be allowed

Strongly Agree 1 2 3 4 5 6 7 Strongly Disagree [...] F) Children (THIS SECTION APPLIES TO BOTH MALES AND FEMALES) We would like to update our database regarding the number and sex of children you have. Q1. Have you ever had any children (include biological, adopted, step-children and stillborn babies)? No O (0) GO TO Q2 Yes O (1) GO TO Q3 Q2. Please answer each statement below, then GO TO SECTION G Religion Yes No (1) (0)

i) I plan to have children in the future O O

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ii) I am currently trying for a child O O iii)I am currently infertile / unable to have children O O iv)I am having / planning to have fertility treatmentO O v) I chose not to have children O O

Q3. Please write in the number of biological, adopted and step-children or stillborn babies you have had in your family. (Please write 0, if none)

(a) (b) (c) (d) Biological Adopted Step- Stillborn children children children babies

Number of children ……… ……… ……… ………… [...] G) Religion Q1. What is your religion? Church of England O (1) Buddhist O (6) Roman Catholic O (2) Hindu O (7) Other Christian O (3) Agnostic O (8) Jewish O (4) Atheist O (9) Muslim O (5) Other: ………………............... O (10) Q2. Currently, on a scale of 0 to 10, where 0 means “not at all” and 10 means “very much,” to what extent do you consider yourself to be a religious person?

0 1 2 3 4 5 6 7 8 9 10 O O O O O O O O O O O

[...] Note: Age and zygosity status were also taken into consideration

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