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Colloquium Abstracts 2001

Colloquium 5: 20-21 June 2001

Institute for the Study of Genetics, Biorisks and Society,

University of Nottingham

This meeting was organised by Filippa Corneliussen and was hosted by the Institute for the Study of Genetics, Biorisks and Society (IGBiS), University of Nottingham.

Presentations were given by Caroline Benjamin, Jennifer Bostock, Angela Cassidy, Filippa Corneliussen, Oonagh Corrigan, Vajira Dissanayake, Sarah Gibbon, Georgina Haarhoff, Klaus Hoeyer, Lotte Huniche, Mavis Jones, Nicola Lindsey, James Mittra, Carlos Novas, Melanie Pearce, Harald Schmidt, Sara Skodbo, Mark Taylor, Anne Wilkinson and Emma Williamson.

Funding/career presentations were given by Paul Martin, IGBiS University of Nottingham, and Jo Harkness, the Wellcome Trust.

The welcome address was given by Professor Gerald Pattenden, Sir Jesse Boot Professor of Organic Chemistry and Pro-Vice Chancellor for Research.

Other participants included Helen Busby, Claudia Downing, Adam Hedgecoe, Michael Hopkins, Kate Miller, Michal Nahman, Peter Odell, Emma Rowley, Andrew Smart, Sue Turner and Richard Tutton.


Presentation Abstracts

Caroline Benjamin
School of Nursing
University of Liverpool 

The journey: patients experiences prior to referral for hereditary breast cancer and the influence of health professionals in this process.

Caroline Benjamin RGN BSc MSc; Merseyside and Cheshire Regional Clinical Genetics Service, Liverpool, UK: Northwest R&D Training Fellow, School of Nursing, Liverpool University

Katie Booth RGN HV PGDE BSc MSc PhD; Macmillan Practice Development Unit, School of Nursing, Midwifery and Health Visiting, University of Manchester.

Over recent years across Europe the number of referrals of women seeking information relating to hereditary breast cancer has increased. In the UK new health service organisation, which involved a partnership between primary care, cancer services and specialist genetic counselling centres was proposed in 1995. Most UK studies show that women have little understanding of what would happen in clinic or what services a clinic might provide.

This study aims to develop a substantive social psychological theory to explain why women, especially those who would be categorised at low and moderate genetic risk, come to be referred to a breast cancer family history clinic. The study investigates, by use of interviews within two to four weeks of the referral event, historical social and psychological interactions and their interpretation by women seeking or receiving genetic information for hereditary cancer in the context of referral. It also explores the influence of health professionals in this process. A grounded theory approach is used within a life course paradigm.

Life course methodologies have rarely been used in health care research but allow the linking of historical events which may have contributed to referral. This paradigm states that any point in the life span must be viewed dynamically as the consequence of past experiences and future expectation. It includes: location in time and place (history, social structure, culture), linked lives (influence of institutions/groups), human agency (individual goals, sense of self), timing (chronologically events). The narratives emerging from the first 15 interviews show the importance of social and family responsibility, searching for meaning, and uncertain needs as well as catalysing events. Themes relating to ‘intergenerational transference’ are emerging linking patterns of motherhood and chronological age with fear of illness.

Jennifer L Bostock
Centre of Medical Law and Ethics
King’s College London

Determined to Kill

‘Sure we’re guilty, if by that you mean we done all the stuff they say we done, but that ain’t the point, is it? These days, no matter how guilty you are, you can still be innocent.’ (Ben Elton’s anti-hero in Popcorn, 1996:229).

What if some people are genetically predisposed to commit homicide? What if we accept that ‘faulty genes’ can make murderers? How should our courts react to genetic defence evidence? How should we as a society react to such claims? Should these killers be held responsible for their crimes? What should we do with them?

My presentation will outline some of the main issues considered in my research, which seeks to establish whether the ‘genetic defence’ raises any special questions for our accepted notions of responsibility. A number of cases will be presented which highlight the ways in which genetic evidence may be used by the defence in criminal trials. These will be compared with cases offering other types of defence relying upon psychosocial evidence. Using this comparison I hope to explore whether there is anything different about the ‘genetic defence’ which is uniquely deterministic.

Angela Cassidy
Science Studies Unit
University of Edinburgh

Patterns of Popularisation of Evolutionary Psychology

Evolutionary psychology (EP) is an emerging research field which has been debated extensively in the British media over the last ten years. Evolutionary psychology comprises a number of contentious claims about the evolutionary, and by implication, genetic basis to human behaviour and society. These claims have be en extensively popularised in the media, particularly by means of ‘popular science’ books, and by the exposure of proponents and opponents of EP in the media.

Much popular coverage of EP centres around the political and social implications of its’ ideas. Current debates over sexuality, sexual difference, and changes in workplace and family roles in Europe and America can all be related to the claims of evolutionary psychology. Popular debates in this area are closely related to concerns over biological determinism, especially with the recent completion and findings of the Human Genome Project (Cassidy, 1999).

As a first step in understanding this, I have conducted a quantitative survey of coverage of EP in the UK broadsheet press, working from CD-ROM editions published from about 1990 to present. As well as looking at levels of coverage over this period, I also looked at where in the newspapers EP was being covered, and by what kind of writers. By comparison to ‘classic’ patterns of science coverage in the media (Lewenstein, 1995), I have found that EP is covered in a strikingly different manner. This seems to indicate that evolutionary psychology is seen to be of much wider relevance than what is normally perceived as ‘science’ by the media.

References:
Cassidy, A (1999) Evolutionary Psychology in the UK Media: Hybridisation of Popular and Scientific Spheres (unpublished MSc dissertation) Edinburgh: University of Edinburgh
Lewenstein, B. (1995) ‘Science and the Media’ In: Jasanoff, S. et al (eds.)Handbook of Science and Technology Studies, Thousand Oaks, CA: Sage.
Pinker, S (1998) How the Mind Works, London: Penguin Books

Filippa Corneliussen
Institute for the Study of Genetics, Biorisks and Society
University of Nottingham

The Impact of Regulations on Biotechnology Company Formation and Early Development in the UK and Norway

This paper will describe research investigating the regulation of biotechnology companies in the UK and Norway. In particular, the project focuses on the implications of different regulatory frameworks for company behaviour.

The creation of an appropriate regulatory environment is the means by which governments try to balance the freedom of companies to commercially develop new genetic technologies against the need to maintain broad public acceptability. Some biotechnologies are regulated by the application of old, more general laws, but most industrialised nations have passed new laws governing the most controversial procedures and applications. There is a gap, however, in empirical observations of how these laws are implemented and incorporated into company culture. The gap leads to the commonplace assumption that stringent regulations impede company formation and inhibit their development.

This paper will investigate the implications of biotechnology policies and regulatory frameworks in the UK and Norway on the ground. It will discuss the experiences of biotechnology companies and examine the way in which different regulatory regimes and styles of governance impact on company formation and early development. The results are based on a series of interviews with founders and management in various biotechnology companies in the two countries. Provisional findings of the research will be described which highlight the differences in national regulatory environments and the experiences of companies in responding to them. The paper will conclude by exploring the way in which regulations are embedded in broader cultural and social structures.

Oonagh Corrigan
Department of Sociology
Goldsmiths College, University of London

Ethics, Trials and Pharmacogenetics

Pharmaceutical companies are keen to reassure the public that the social and ethical consequences of pharmacogenetic research are minimal and not comparable to other more potentially problematic areas such as gene therapy, cloning and human embryo research. Current pharmaceutical practices in pharmacogenetic research entails the inclusion of an additional study to a number of pre-existing clinical drugs trials. This involves the collection of blood samples from patients so that their response to the study drug can be analysed in relation to genetic polymorphisms identified in the patient’s blood. The ubiquitous nature of informed consent in contemporary bioethical regulations governing human participation in biomedical research, means that such samples are obtained by gaining the trial subject’s written, informed consent. Pharmaceutical companies have also taken measures to ensure that principles of confidentiality and privacy are maintained. Such principles are based on a model of the consenting subject as a disembodied, autonomous, rational actor capable of assessing the potential risks and benefits of participation in a clinical trial. Drawing from my preliminary research in the field of pharmacogenetics and from previous qualitative research on the process of informed consent in clinical drug trials, this paper critically examines this model and draws attention to some of its major limitations.

Vajira Dissanayake
School of Human Development
University of Nottingham

A study of attitudes towards the new genetic and assisted reproductive technologies in Sri Lanka: A preliminary report.

Dissanayake VHW1, Simpson R2, Jayasekara RW3

1 Lecturer, Human Genetics Unit, Faculty of Medicine, University of Colombo, Sri Lanka and PhD Student, Department of OBGYN, School of Human Development, Faculty of Medicine and Health Sciences, University of Nottingham, UK.
2 Lecturer, Department of Anthropology, University of Durham, UK.
3 Professor of Anatomy and Director, Human Genetics Unit, Faculty of Medicine, University of Colombo, Sri Lanka.

Background and Methods: Sri Lanka is one of the most interesting islands in the world, with considerable cultural and religious diversity, predominantly Buddhist. It is a developing country with a literacy rate of over 95% for both men and women. Economic liberalization in the early 1980s facilitated access to new technologies, including genetic and assisted reproductive technologies. In this background, we undertook a questionnaire based descriptive study to examine the attitudes of Sri Lankan medical students and doctors towards new genetic and assisted reproductive technologies at the turn of the century. The study is ongoing. In this preliminary report we present the results of a survey of 36 trainee obstetrician and gynaecologists.

Results: The group characteristics were as follows: Average age – 31.3 years; Sex – 78% Male; Marital Status – 41% Married; Religion – 61% Buddhist, 8% Hindu, 8% – Islam, 12% Christian/Catholic. Genetic Counseling was almost universally accepted. However, prenatal diagnosis and termination of pregnancy was less acceptable. Those demonstrating approval to questions examining these issues ranged from 64% to 92%; the main reason for disapproval was concerns about risk and safety (62.5%). All approved the use of assisted reproductive technologies. However, they were less acceptable when donors or surrogate mothers were involved. Those demonstrating approval to questions examining these issues ranged from 56% to 69%; disapproval was mostly due to personal morality (79%). Approval for reproductive cloning, therapeautic cloning, and posthumous reproduction was 50%, 92% and 72% respectively. Personal morality was the majority reason for disapproval (57%). Religious believes did not play any significant role towards negative attitudes.

Conclusions: This group of Sri Lankan doctors was mostly positive towards the use of new genetic and assisted reproductive technologies. Although, 12% in this group were Christians or Catholics none of them cited religion as a reason for any negative attitudes. The influence of a Buddhist cultural background, which is sympathetic towards overcoming reproductive failure, is evident in this study.

Georgina Haarhoff
Centre for Family Research
University of Cambridge

The impact and implications of a genetic diagnosis after the experience of colorectal cancer

Objectives: First, to explore the impact that a genetic diagnosis has on the individual after they have had a bowel cancer. Second, to investigate whether either their personal experience of the cancer and/or the uncertainty inherent in colorectal genetics has any effect on this.

Methods: In-depth interviews with people who have suffered from an early colorectal cancer, some of whom have had a subsequent genetic diagnosis. Also, interviews with spouses, and lay groups.

Results: For some time after surgery, all patients ‘watched’ themselves for signs of recurrence of symptoms. This decreased with the increase in time since surgery for sporadic patients. However, genetic patients expressed the development of an orientation towards the future, and developed an elaborate net of self-protection from genetic risk. This included an internal sense of ‘knowing’ their bodies due to their knowledge of cancer, and an external reliance on screening. However, the difficulty of colorectal mutation searching and lack of communication, in the family, socially, and medically, made it difficult for respondents to engage with their genetic risk.

Conclusion: A genetic diagnosis is still significant even when an individual has already had the cancer and knows what it is that they are at risk of. Risk management both for self and family, may be hindered by lack of communication and information available.

Klaus Hoeyer
Institute for Anthropology
University of Copenhagen

Donating blood for genetic research. On the practises of collecting tissue samples in Northern Sweden.

In Västerbotten, Sweden, a start-up genomics company, UmanGenomics AB, has gained all commercial rights to a research biobank containing blood samples of the majority of the adult population. The company has experienced a smooth introduction. According to the company, the absence of public debate is an effect of an ‘ethical model’ developed by the company. The model stipulates the use of informed consent as a guiding ethical principle.

The blood donors, however, do not show any specific interest in the information they are offered as a result of the recent focus on informed consent. Anthropological fieldwork has revealed major shortcomings at the level of information among the donors as well as discrepancies between what the ‘ethical model’ regards an ethical problem and the perceptions among the donors. Instead of just being shocked by the low level of information behind the partial informed consent, the paper suggests to consider how to make a seeming disinterest in information meaningful. A starting point could be to analyse the donation, less as a conscious expression of opinion (“I donate blood because I want to support this kind of research”), and more as a practice.

Lotte Huniche
Department of Psychology
University of Copenhagen

Learning from the voiceless

Speaking Colin:

 

I don´t think about these things every day
From time to time
More than twice a year
I wasn´t told until I had my first child
so I couldn´t really do anything
then I watched
I started to think about the symptoms
remembered from my mother
my own relationship
it didn´t go that well
arguing like mum and dad
It is in a way
always coming up
Every time I do something
it comes up
Has this anything to do with the disease?
if I happen to knock something over
it could be
I have read somewhere
that it could be a symptom


In my talk I shall discuss Colin and a way of learning from him. Colin is at risk of Huntingtons Disease1 (HD) and his relatives portray him as not actively speaking of or doing anything about it. Doing research into HD from a critical, social psychological perspective I have spoken to somewhere between 50-60 people living at risk, relatives, professionals and people who are ill in various stages; all of whom are actively relating themselves and their way of living to HD. In my talk I shall present an understanding of how the disease becomes part of peoples everyday conduct of life and of their life trajectories when they are not regarded as actively relating their lives to HD. What do they do that is different and similar to the ones who are regarded and regarding themselves as active? This attempt at voicing the hitherto voiceless has moral and ethical implications. Can we as researchers stay loyal to the perspectives of the voiceless? How might this be possible at a point in history where individuals are commonly conceived of as autonomous, rational, knowledgeable and hence responsible decision makers? What do we do about our own convictions?

1 Huntingtons Disease is a late onset, neurodegenerative disease with severe symptoms gradually progressing until death after 15-25 years. There is a 50% risk of passing on the mutation in any affected individual. A genetic test has been available since 1993. The test informs persons at risk whether they have the mutation and hence will get ill at some point in their life or not.

Mavis Jones
School of Nursing and Midwifery
School of Economic and Social Studies
University of East Anglia

Governance of genetic technologies: A preliminary catalogue of trust issues

The U.K. is one of many nations struggling to develop effective and acceptable mechanisms to regulate the technological applications of genetic research. Efforts thus far have been characterised by uneasy stances, from strict moratorium to vague regulation. The body of practices collectively termed ‘biotechnology’ apparently defies straightforward policy development. Although it is questionable whether institutional governance can quell the fears of all stakeholders, its task nevertheless is to find the best compromise. This paper addresses an aspect of biotechnology debates that is stymieing regulatory attempts: the crisis of faith in the authority of state and science on the part of the ‘publics’.

An overview of popular explanations for this crisis will be briefly summarized, e.g. analyses of late/troubled modernity; reductionist science, values, and knowledge; implications of industrial involvement (political economy); the rise of the information economy; the dominance of thin (as opposed to strong) democratic structuration. I will supplement this by cataloguing the implications of regulatory action or inaction regarding human genetic technologies. Agenda setting interests (regulators, media, academia, industry) recognize that faith in authoritative legitimacy is waning, as manifest in their official responses to and accounts of major debates and issues. An intriguing exercise, therefore, is the compilation of a list of public trust issues based on the institutions whose existence is based on monitoring and responding to the public.

Nicola Lindsey
Department of Science Communication
Imperial College of Science, Technology and Medicine

What is Gene Talk? Some conceptual issues.

This paper aims to examine the concept of ‘gene talk’ as it has emerged in the literature on the social studies of genetics. It will argue that whilst the term is becoming increasingly more prevalent, it is not clear what its precise definition and meaning is. This, it shall be argued, has resulted from a discrepancy in the assumptions that are made when the term is applied. These assumptions shall be examined through reference to four related issues – 1) who can engage in gene talk (does it take place amongst scientists, non-scientists or both?); 2) can gene talk be considered as a means of assessing a participant’s state of ‘knowledge’ of genetics; 3) does gene talk have a deeper symbolic or metaphorical meaning; 4) is gene talk is something that should be monitored or controlled – and through reference to four principal authors – namely, Howe and Lyne (1992), Kitcher (1996) and Fox Keller (2000). The paper shall conclude by attempting to derive a unified definition of ‘gene talk’ and shall briefly consider how this may be used as a conceptual tool to investigate the dynamics of current debate and decision-making about genetics in the wider public sphere.

James Mittra
Dept of Sociology
University of Warwick

Genetic Testing and Life Insurance: A legislative Nightmare

This paper, based on my research into the genetics and life insurance debate in the UK, will provide a critical analysis of the developments that have taken place over the last 6 years around genetic information and its possible use by the insurance industry. I will argue that the issue is a legislative nightmare as the debate is largely framed by fears of possible future scenarios rather than current realities. I will argue that professional organisations, the insurance industry and Government have created many of the problems in the debate due to their reactive responses based on short term goals (The insurance industry staunchly defending its right to underwrite and government trying to allay public fears of genetic discrimination, for example) rather than developing a carefully considered and publicly transparent decision-making process. I will argue that the “special” attention given to genetic information helps complicate this debate and frames the way groups and organisations respond to the issues. I will then make arguments for a public centred decision making process, such as a citizens’ jury, which I will argue would be best suited to legislating on such issues as the use that can be made of genetic information. Debates around genetics are highly emotive and often controversial and I will argue that a citizens’ jury is best suited to deliberating the scientific and social aspects of this debate and can reach fairer and more legitimate decisions due to their impartiality and pre-commitment to deliberative ideals.

Carlos Novas
Department of Sociology
Goldsmiths College, University of London

The political economy of hope: the labour of expecting cures

With recent discoveries in the fields of genetics and the neurosciences, the advent of new imaging technologies, and the increasing funding of biomedical research, there is optimism and hope that cures for many human ailments will be found in the near future. For those affected by a range of human pathologies or genetic disorders the hope invested in science is not only an aspiration, but rather can be thought of as a domain of activity that seeks to realise the many future possibilities inherent in the science of the present. The hopeful domain of activity is contoured by a political economy in which individuals are forced to live their lives in the context of the shortcomings of the health care system, the discrimination meted out by employers and insurance companies, the lost income of having to care for a loved one, and the efforts on behalf of patient and patient groups to raise funds to help find cures or treatments to the illnesses that ail them. In my talk, I shall characterise this realm of activity as the political economy of hope. This political economy of hope is suggestive of an interesting mutation in thebiopolitics of our present where patients and the groups that represent them have come to play an important political and economic role in the quest to find cures for human disease. The concept of biovalue will be introduced to explore conflicts over the valuation of life both in economic and ethical terms.

Mel Pearce
Institute for the Study of Genetics, Biorisks and Society
University of Nottingham

Genetic Counsellor Perceptions of the Genetic Counselling Role

As the amount of knowledge on the identification, transmission and development of genetic disorder increases so too do the ethical and practical questions of how this information is to be used and communicated to and for the individuals affected (Wertz,1992). Genetic counselling, as the procedure whereby much of this information is transferred and discussed between NHS personnel and the general public, is therefore of significant import. Good quality research into its process, content and effect is essential. Much of the research in this area has been from a social psychological perspective and has concentrated on outcome alone. This has resulted in limited knowledge about what goes on within the genetic counselling sessions and of the relationship between process and outcome. There is, state Michie and Marteau, “little research documenting what counsellors describe themselves as doing, or what they actually do, during the counselling process” (1996 p105).

This paper looks at some of the initial findings from a series of semi-structured interviews with genetic counsellors performed as part of an ethnographic and conversation analytic PhD study into the impact of genetic counselling. It explores counsellor perceptions on the role and structure of genetic counselling and on the purpose and function of non-directiveness within that role. It also looks at understandings and beliefs about client perceptions and expectations and the consequent dilemmas that might arise where these may differ from their own. Finally it poses the question whether genetic counselling should be known as “counselling” at all.

Harald Schmidt
Department of Philosophy
University of Münster

Human Dignity – Whose dignity?
On an apparent conceptual trump in the debate on PGD and therapeutic cloning

‘Human Dignity’ is one of the heavy weight concepts in western philosophy, theology and politics. Unsurprisingly, it is often referred to in issues of bioethics, e.g. in the context of the new Assisted Reproductive Technologies (ART). Most often it is cited by restrictive parties opposing the apparently relentless progress of science. The aim of this paper is to show that in the case of pre-implantation genetic diagnosis (PGD) and therapeutic cloning the concept of ‘human dignity’ is however of only very limited use. For an adequate evaluation it needs to be examined whether the term refers topotentially or actually existing (born) human beings, or to the abstractum of the human species. I argue that only in the latter two cases is the term meaningfully applicable.

In order to achieve this the more recent historical role of ‘human dignity’ is presented. It will be shown that it came to acquire the prominence and authority now associated with it primarily as a concept that was formulated in reaction to the atrocities committed in the context of World War II, especially in Nazi-Germany. Entering the scene most prominently in the UN Charter (1945) and the Declaration of Human Rights (1948), and also present in various national constitutions, the concept is intended to express both respect for-, and to guarantee legal claims on, the fundamental rights of factually existing (born) people. ‘Human dignity’ in this tradition might have relevance on issues such as e.g. reproductive cloning; it has however no significance for therapeutic cloning and PGD.

To assess the potential bearing of other notions of ‘human dignity’ on PGD and therapeutic cloning I rely on a recent article by German philosopher Dieter Birnbacher who differentiates between individual and generic human dignity. The first refers to factually existing people in the above sense and is a “quasi-absolutum”, thus unconditionally determining the outcome of the choice between conflicting goods in favour of the individual. The latter refers to dignity of all possible biological forms of instantiation of the human speciesin toto as well as to the abstractum of the human species, and is negotiable. In the case of generic human dignity, both PGD and therapeutic cloning interfere; this interference however has only indirectly restrictive implications on policy making.

There may be other reasons speaking against both of these forms of embryo research (that will not be discussed in this paper) but the reference to an apparently omnipotent concept of ‘human dignity’ as made in e.g. the recentBioethics Convention (1997) of the Council of Europe and various resolutions of the European Parliament – is of no help if applied inappropriately and set forth as unspecified, as is often the case. Moreover, it amounts to a ‘tyranny of dignity’ (U. Neumann), in that “saviours of dignity” accuse fellow EU Member States who are permissive of embryo research of fundamentally violating ‘human dignity’, an accusation that undoubtedly inhibits a factual and productive debate.

Sara Skodbo
Department of Anthropology
University College London

Genetic technological innovation, identity and food in Norway.

The use of genetic technologies in the production and processing of foods has been an area of growth in recent years, and future developments in this field are likely to be the site of extensive debate and public interest. It is clear that the way in which such technologies emerge depends on the local appropriation and adaptation of ‘global’ genetic technologies. It is the under-researched mechanisms behind the everyday appropriation and negotiation of new technologies in industry that is investigated here. How and why do food companies pursue genetic innovations?

The paper presents results from fieldwork in Norway. Based on case studies in the food industry we see how genetically modified technologies and genetically modified organisms are bearers of agency that extends far beyond the limits of technological objects as traditionally understood. The possibility of genetic technological development is found to depend upon the individual technology’s interaction with local notions of body, health and identity, as well as core values of sameness and equality in the definition and practice of citizenship in the Norwegian context.

On the basis of these case studies the paper suggests possible responses to the need for new theoretical frameworks to meet the challenge of understanding genetic technological development. Primarily I want to look at conclusions from my PhD work in progress, which aims to incorporate Alfred Gell’s work on the anthropology of art into new anthropologies of technology. This includes a basic shift away from traditional ‘actor network’ understandings of alliance and strategy in favour of understanding genetic technology within the complex nexuses of social relations within which they exist.

Mark Taylor
Sheffield Institute for Biotechnological Law and Ethics
University of Sheffield

Does the Human Rights Act 1998, support, condemn, or is it silent on, the topic of genetic discrimination within (prospective) contractual relations?

It is difficult to state with confidence exactly how extensively genetic discrimination is currently practised in the UK within the contractual context. It is hard to deny however that as detailed genetic information becomes not only easier to access, but also increasingly seen as a valuable diagnostic and prognostic tool, incidents of genetic discrimination in all contexts are likely to rise. The issue of genetic discrimination within the contractual context is still largely unregulated in this country and the assumption is that the law requires development to tackle its potential injustices. I shall question the extent to which the partial incorporation of the European Convention on Human Rights (ECHR) into domestic law at the end of last year by means of the Human Rights Act (HRA) might either represent such development or at least support the assumption that such development is needed. I suggest that the extent to which the HRA might currently be understood to represent such a development is in fact strictly limited. I further suggest however that together the ECHR and the HRA might provide not only the motivation but also the means for development of English law in radical fashion so as to address many of the concerns associated with genetic discrimination. In analysing the justification for this suggestion however I unearth a paradox in that, to a limited extent, the principles underlying the ECHR and also therefore the HRA might actually support an individual’s right to discriminate on genetic grounds. While then I believe that the principles underlying the HRA do in fact support the proscription of unfair genetic discrimination, they would I believe fail to support a blanket ban and I believe its principles could in fact be invoked to help define and then provide support for ‘fair’ genetic discrimination.

Anne Wilkinson
Department of Philosophy
University of Leeds

Why can’t I go to hell in my own way?

In England, the use of the law is based on the presumption of liberty. My paper will consider when, and if, this presumption should be over-ridden in the uses to which some of the new reproductive technologies (NRTs) are put, in order to regulate and restrict their use.

The law is also regarded as a reflection of society’s wishes and the authority for the maintenance of what is deemed by our society to be good order. However, there is the complication that laws tend to be constructed reactively, which may be too late to overcome any long-term or intergenerational harm that NRT use may cause. The new commissions set up by the Government attempt to overcome these objections and enable good legislation to be passed on projected outcomes. Libertarians and utilitarians argue that vital humanitarian research and treatment should not be fettered by too many restrictions, for the ultimate benefits to mankind outweigh the deeper moral concerns.

Probabilities in the field of human genetics are becoming certainties at an exponentially rapid rate, so how much should the law interfere in what is regarded as an area of science holding so much promise? I argue that there is an analogy here between the Devlin/Hart debate of the 1960s, which centred around the connection between crime and sin (i.e. immoral behaviour) and which examined to what extent the criminal law should concern itself with the enforcement of morals. The law remains the best tool that we have and on its wise use depends the stability of our society.

Emma Williamson
Centre for Ethics in Medicine
University of Bristol

Ethical Protection in Epidemiological Genetic Research: Participants Perspectives (EPEG): Methodological Issues.

Authors: Emma Williamson, Richard Ashcroft, Julie Kent, & Trudy Goodenough

The EPEG project, [Ethical Protection in Epidemiological Genetic Research: Participants Perspectives] is a three year Wellcome Trust funded project which uses qualitative research methods in order to consider how epidemiological research participants perceive health and genetics research.
As such this project raises a number of questions relating to the relationship between science and social science research. These questions include: the public’s understanding of science/social science, ethic’s committee’s understanding of science/social science, how science/social science are located in terms of political participation, consumption, and social citizenship.
This paper will address some of these key questions through a discussion of methodological issues raised by this research. For example: Is it possible to ask ‘research participants’ to talk about their experience of research, within a research context? How do you engage groups of individuals in discussions about epidemiological research in an accessible manner? Is it possible to achieve accessibility without assuming a deficit model of understanding?
How do we talk to children? Is it possible to talk to children about genetics without substantial ethical risk? Is it possible to look at children and ethics without doing so in a moral development framework? And what can we do to make sure we understand children and their perspectives? Finally, this paper will address the question, why is it important to talk to these specific groups about genetics?

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