Genomics and Bioethics: Interdisciplinary Perspectives, Technologies and Advancements

Genomics and Bioethics: Interdisciplinary Perspectives, Technologies and Advancements

Soraj Hongladarom (Chulalongkorn University, Thailand)
Indexed In: SCOPUS
Release Date: September, 2010|Copyright: © 2011 |Pages: 332|DOI: 10.4018/978-1-61692-883-4
ISBN13: 9781616928834|ISBN10: 1616928832|EISBN13: 9781616928858

Description

Today's world is one in which science and technology play an essential role in almost every aspect of life. Almost all of the changes that are taking place are due to advances in science and technology, as can be seen in the emergence of the Internet, which has enabled information to explode exponentially in the past few years, and biotechnology, which has made such scenarios as human cloning and genetic manipulation of organisms an everyday reality.

Genomics and Bioethics: Interdisciplinary Perspectives, Technologies and Advancements contributes to the existing gap in interdisciplinary research on comparative studies of cultural, social and ethical implications of genomics and bioinformatics. This work focuses on ethical, social, cultural, and legal implications of genetics, genomics and genetic databanking as they relate to concrete cultural and historical traditions.

Topics Covered

The many academic areas covered in this publication include, but are not limited to:

  • Collective guardianship for ethical genetic research
  • Direct-to-consumer genetic testing
  • Ethical and legal aspects of human biobanks
  • Human genetic research
  • International debates on bioethical issues
  • Knowledge and social representations of genomic research
  • Moral deliberation over the status of the embryo
  • Public health measures and medical intervention
  • The concept of ‘property’ in genetics and databanking
  • Using genetic knowledge in nutritional sciences

Reviews and Testimonials

Contributors from Australia, Chile, Germany, India, Indonesia, Macedonia, Malaysia, Singapore, Spain, Tajikistan, Thailand, the UK, and the US reflect international concerns and describe agreements, codes, conventions, guidelines, laws, and protocols from their countries and various international organizations and councils concerned with human rights and ethics in biomedicine. ... Summing Up: Recommended. Upper-level undergraduates through professionals/practitioners.

– F.G. Shrode, Utah State University. June 2011 Choice Magazine .

The topic and the academic disciplines represented by these authors also show the depth and breadth of the collection. Several papers deal with the legal aspects of genetics and biotechnology in the authors' own countries. A few deal with theoretical and philosophical formulations, while more discuss the roles of particular religions, some of which are rather seldom discussed in the literature, in bioethics.

– Soraj Hongladarom, Chulalongkorn University, Thailand

Table of Contents and List of Contributors

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Preface

This book grew out of an international workshop on “Technology and Culture,” which was held in Bangkok, Thailand on March 27, 2007. The workshop was supported by a generous grant from the International Institute for Asian Studies (IIAS), a research organization based in Leiden, the Netherlands focusing on supporting research mostly in social scientific and cultural studies of Asia. The grant was part of the series of grants made available under the joint effort between the IIAS, the European Alliance for Asian Studies, and the Asia-Europe Foundation. This grant, entitled “The Asia-Europe Workshop Series” aims at fostering closer ties between academics in Asia and Europe so as to create new knowledge and understanding on issues of common interest between the two continents.

The workshop, whose full title is “Technology and Culture: Genetics and its Social and Ethical Implications in Asia and Europe,” was held in conjunction with the Eighth Asian Bioethics Conference1,  which was a rather large event for those who are interested in issues related to ethical, social and legal aspects of biomedical sciences and biotechnology, especially in the context of Asia and Asian cultures. As befitting the overall theme of the Asian Bioethics Conference, the workshop on “Genomics and Culture” looks at how the cultures and traditions interact with issues which are fast emerging due to the rapid advancements in genetic sciences. However, not all papers that were presented during the workshop are published here, and in fact several chapters in this book were not presented during the workshop. So this book is not a mere collection of papers presented during the workshop, but an original work that only has its starting point in that 2007 workshop.

It is undeniable that the world today is one where science and technology play an essential role in almost all areas of life. Two technologies that permeate people’s lives the most are those related to information and communication on the one hand and the manipulation of the basic constituents of life itself on the other. Information and communication technologies are making themselves present ever increasingly, so much so that the lives of many people today is almost saturated by the constant demands these technologies are making on them. It might be common place a few years ago to say that the Internet has become more prevalent in people’s lives, but today the Internet itself has become more like the environment itself, something not quite unlike the air we breathe or the water we drink and bathe with. So the Internet is not only prevalent, it has become totally saturated. Even in the developing world, more and more people are using the mobile phones. Many of these mobile phones, furthermore, are internet capable, meaning that people can carry internet connection everywhere without being tied down to a desktop computer. Impacts and implications of this massive transformation in people’s lives everywhere on the globe is indeed staggering.

The other massively transformative technology is biotechnology. As the Internet is deeply transformative in how we think and how we relate to one another in the social world, biotechnology and genetic sciences are poised to transform the very constitution of our own physical bodies themselves. The new era in life sciences and biotechnology are fast unfolding itself before our very eyes. The era started in earnest with the success in cloning mammals by the team in Scotland a few years ago, and this beginning was strongly reaffirmed through the success of sequencing of the entire human genome a short while later. All these, together with the explosion of the Internet and mobile computing, make the time we are living in a very exciting one. New possibilities and vistas are opening up in a way that was not even conceivable only within the memories of many living nowadays.

What is more exciting, perhaps, is that the information and communication technologies and the technologies in biomedical sciences are in fact merging together. Computers were used in computing the huge quantity of data available in the human genome. The genome itself has been ‘digitized,’ meaning that the information contained in the genome can be directly manipulated and processed through computing machinery. Many groups are doing research on brain-computer interaction, with many exciting applications. The merging of the two technologies could point to a time when the physical bodies, made of course of flesh and blood, and the bodies of computer hardware are fused together. Computing technologies did not only make inroad into biotechnology, but the other way round it also the case. Functions of certain aspects of biology are being used to help increase the power of computers. Designs of hugely powerful computers are being modeled on the brain. Studies are being conducted to search for ways to store digital numbers on biological material, which would make computers much smaller and more powerful. Moreover, how the synapses arrange themselves in the brain are becoming model for computers. Even how different brains (different persons) interact and collaborate in accomplishing certain tasks could be a model on how computers themselves collaborate. The line between the biological and the metallurgical or artificial are becoming more fuzzy by the day.

However, we do not live in a purely scientific and technological world. That is to say, if everything in the world functions as does an idealized computer or a biological laboratory, then things would be much tidier and much more tractable that it is now. But we do not live in the idealized world. Scientific research and technological innovation are always bound to have repercussions when they are introduced to the public at large. Since science and technology do not exist in the vacuum in idealized condition, they need to factor in these surrounding contexts where people’s goals, beliefs, desires, values, traditions, histories, cultures are taken into account. The overall goal of the 2007 workshop on Genomics and Culture was precisely to investigate how the ethical implications of genomics and related sciences and technologies could be investigated through the lenses of the world’s major cultural traditions, that of East and West. This overall goal also informs the basic orientation of this book.   

*

The intersection and the meshing of the activities, procedures and end results of science and technology with the people’s goals and values discussed above present themselves in ethical dilemmas as well as social and cultural implications of science and technology. For instance, there is the technical problem of how to clone a mammal. What Wilmut discovered was a technique of taking out the nucleus of a certain cell, injecting it with another nucleus taken from another organism and somehow coaxing the mixture to grow. This in itself is the scientific breakthrough. But when the activity of cloning is considered in the wider perspective, we find that it gives rise to a large number of problems, many of which are familiar. First of all, is it ethical to do the cloning? Here the question does not address the technical aspect of cloning; instead it demands an answer as to the value of the act itself. And how are we to know those values? Is it enough to search down the depth of your soul, so to speak, in order to find the answer whether cloning is ethical or not? Or should we conduct a survey to sound out the public’s opinion on the issue, and if the majority finds that it is ethical (or unethical) then could we pass the judgment that it is really ethical (or unethical)? Or do we wait and see what happens as a result of introducing the cloning? Or do we take as an assumption that reason and argument will always lead us to eventual agreement and perhaps truth, including truths about moral values?

These are of course very intractable problems, stuff that philosophers and ethicists have been tackling for millennia. The intractability has led many to say that these kind of problems do not have real solution and it is actually a waste of time to find solutions to them. But that is a grave mistake. The difficulty in learning the ethical value of an act does not mean that the act does not have objective values. Ethics is not a calibration of different opinions and viewpoints; it is a serious undertaking aiming to go into the depth of things and of action. At any rate not bothering with thinking about ethics would certainly result in a much worse off situation than thinking about it. A society that does not reflect at all on the ethical value or implications of their action would be a dry and meaningless one indeed.

So this is what the chapters in this book are trying to offer. As I mentioned some of the authors were present during the 2007 meeting, and their chapters have been much revised during the course of the two to three years from that meeting to the publication of this book. Those who were present at the meeting whose chapters are available here are: Somparn Promta, Chee-Khoon Chan, Leonardo de Castro, Ole Döring, Jakkrit Kuanpoj, Brigitte Jansen, Terry Kaan, and Jürgen Simon. As the 2007 workshop was held under the auspice of the Asia-Europe Foundation, it was natural that scholars and scientists from Europe and Asia came and interacted during the workshop. Somparn and Jakkrit are from Thailand. Chan is from Malaysia. Leo de Castro was from the Philippines, and Terry Kaan was from Singapore. From the Europe side, Ole Döring, Brigitte Jansen and Jürgen Simon are all from Germany.

Furthermore, we have a number of authors who were not present at the workshop but nonetheless responded to our general call for papers and presented their works for consideration. Their works significantly broadened the scope and increased the depth of the book. Instead of only Asia and Europe these authors have made the book really global. Chamundeeswari Kuppuswamy is from India, but now is working in the UK. Elena Ignovska is from Macedonia. Richard Stein is from the US. Varghese Daniel is from Australia. Eduardo Rodriguez is from Chile. Theofrantus Litaay is from Indonesia. Firuza Nasyrova is from Tajikistan, and, last but not least, Sergio Malanda is from Spain and currently working in Australia. These authors show the breadth and the international character of the chapters in the book very well.

The topic and the academic disciplines represented by these authors also show the depth and breadth of the collection. Several papers deal with the legal aspects of genetics and biotechnology in the authors’ own countries. A few deal with theoretical and philosophical formulations, while more discuss the roles of particular religions, some of which are rather seldom discussed in the literature, in bioethics.

*

The book is divided into two sections. Section One contains papers which are of more philosophical and normative nature, and SectionTwo deal with more specific topics, namely the legal situations in certain countries and discussions as to the ethical implications of these legal mechanisms. The first chapter, “Buddhism and Human Genetic Research,” by Somparn Promta, is an attempt to find out how Buddhism respond to the advancements in biotechnology. What is notable in his presentation is that Somparn argues that in Buddhism nothing is unnatural. That is, everything that happens does happen according to natural law; thus even acts perpetrated and designed by human beings are natural as they would not be possible in the first place if natural law is violated. The implication of this is that acts such as cloning and manipulation of genetic coding, which are something criticized as being ‘unnatural’ are accepted as natural in Buddhism, and thus Buddhism does not have anything in principle against such acts, or indeed any acts at all so long as they are natural. Hence if there is to be anything wrong in these acts the wrongness must come from somewhere else, and Somparn argues that for Buddhism the wrongness or rightness of action comes from their consequences.

The second chapter, “Genomics and Population Health:  A Social Epidemiology Perspective,” by Chee-Khoon Chan deals with the contrast between public health measures and medical intervention, where he argues that in some cases the former is more effective than the latter in preventing infectious diseases and in raising the overall health standard of a population. Chan argues that if this is the case (and he presents evidence and reasons showing why it is really the case), then the promises of genomics would appear to be vacuous because simple public health or epidemiological measures would be equally good. Since genomics promises to individualize care, it is at odds with public health and epidemiology. Genomics may prove to be valuable in individual care, but its role in how the average health standard in population at large appears to be contested. As long as population health factors are not taken into account, genomics, so he argues, would not realize its full potential.

Moving from epidemiology to the realm of international law, Chamu Kappuswamy, in her “International Organizations as Fora for International Bioethical Debate: Towards a Just International Bioethical Law?” looks at the role of international bodies as the place where international debates on bioethical issues take place. In theory these international venues are supposed to be neutral in that they do not favor any particular traditions or belief systems. As a neutral venue for debates, these international arenas should recede to the background, so to speak, and let all the voices from among all parties involved in the debate and discussion be heard. However, in practice such a scenario scarcely happens, as these fora and venues are often criticized as being dominated by the West and their claim of universal values. In order for the international venues to be a really just place where all the voices are given due prominence, the roles and arrangements of these international organizations need to be scrutinized. For Kappuswamy, the peoples of the world need to utilize their various firepower coming from their respective cultural traditions to tackle the difficult dilemmas arising from the use of genomics and biotechnology. She is still optimistic in the role of the international organizations as a meeting place for people coming from very different backgrounds. This will ensure that genuine international agreement and perhaps legal mechanism is possible.

The next chapter is by Elena Ignovska (“The Value of Life of the Embryo Observed from Two Different Lenses: From its Own Potential to Develop, and from the Context in which  It is Embedded”). Here the chapter deals with moral deliberation over the status of the embryo, observed from two perspectives, namely the inner context of physical and biological composition including the argument of potentiality as a driving force of development, and the external context within lived and experienced practices in which an embryo is inevitably embedded. For Ignovska both components are integral parts of what constitutes the life of the embryo, and therefore any separated observation is biased and does not fulfill the demands of the universal truth. Hence, the usual argument that focuses exclusively on the embryo itself, whether the embryo deserves moral right as a result of its potentiality for autonomy, is misguided. Instead of focusing only on the embryo, Ignovska invites us to have a look at the context wherein the embryo itself is embedded. Not only the right of the embryo is in question, but the right of the parents and others related to the embryo needs to be considered too. For instance she looks at created embryos in in vitro procedure within the context of a divorce dispute in which progenitors are confronting different interests for the future of the embryo itself.

In the next chapter, Richard Stein (in “Direct-to-Consumer Genetic Testing”) discusses the emerging trend of direct-to-consumer genetic testing and identifies a number of potential pitfalls that emerge from the practice. After providing some very useful details and background information about the human genome project and genetic testing in general, Stein outlines both the benefits and ethical and other concerns that arise from it. On the one hand, it is the right of an individual to know what their genetic constitution is like and what could result to their body afterwards (some individuals, however, may prefer to have the right not to know so that they don’t have to bother with potentially psychologically damaging information – in any case it’s the individual herself who chooses). But on the other hand there are a number of concerns, such as clinical relevance of the consumer testing service, the role of counseling, sensitivity and specificity of the testing, and the danger of genetic determinism (the belief that someone’s genetic makeup accounts for all her physical and personal being). Stein points out that public understanding and education on basic relations between genetics and susceptibility for diseases is very important and should play larger role in society. He also discusses the role of incidentaloma, where testing intended for one purposes turns out to yield another kind of information not originally intended. This can have disruptive effects on the individual and hence ethical considerations of the consumer testing need fully to be taken into account.

Minakshi Bhardwaj also stays in the same general area when she discusses what is called the “omics” technologies (“The Applications of Omics Technologies and the Challenges of Ethics in Nutritional Sciences”). Here she discusses another emerging trend where genetic knowledge is used in nutritional sciences resulting in tailor made dietary recommendations for specific individuals. This practice is very close to direct-to-consumer genetic testing discussed by Stein in the last chapter. In Bhardwaj’s words, “several ... technologies are developed in the last decade that take an ‘omics’ approach i.e. an integrated approach in the study of cell function. It is hoped that the applied integrative omics approaches may be helpful in establishing cause and effect relationships between genotype and phenotype. These ‘omics’ approaches include the integration of genomics, proteomics, transcriptomics, metabolomics  and other omic technologies to do the non-targeted studies of biomolecules involved in the proper functioning of the cells and their responses to environmental changes.” And she raises a number of ethical concerns with such new technologies. What is interesting is her discussion of personalized dietary advice. The idea is that, in order to help combat diseases, food intake should be adapted so as to fight diseases most effectively through knowledge obtained from the individual’s genetic makeup. But according to Bhardwaj, food is not like medicine. People are much more attached to food, viewing food as part and parcel of who they are, than they are to drugs. This raises a salient ethical point. Furthermore, Bhardwaj also discusses the impact that these new technologies could have on the developing countries and the whole issues of ethics of food and global justice.

Leaping from genetic testing to the practice of conducting biomedical research on human subjects, Leonardo de Castro and Chin Leong Teoh, in “Beyond Informed Consent: A Model of Collective Guardianship for Ethical Genetic Research,” proposes a new model of obtained informed consent for research involving genetic constitution of population. De Castro and Teoh present a convincing case that the mainstream method of emphasizing individual autonomy and individual consent alone might not be adequate in furthering and facilitating research that could translate into a lot of benefits for humankind. Instead of the idea of individual autonomy where the lone individual possesses and controls his or her genetic information, the information in question should be subject to multiple ownership or custodianship that call for multiple loci of consent. If the human genome is the common heritage of humanity, de Castro and Teoh believe that a model of collective guardianship of genetic information may be more appropriate. In such a case, guidelines which combine the principle of informed consent with the institutionalization of the oversight role of ethics committees in the management of genetic databases, in their use for secondary research, in the crossmatching of databases, in the decoding or unlinking of samples or data, and so on, can be drafted so that important work in population genetic research can proceed whilst still respecting the rights and interests of human subjects.

Moving from informed consent to theology, we find Varghese M. Daniel discussing genetics and theology in the next chapter (“Genomics and Genetic Engineering: Playing God?”). A common argument against research on genetics is that human beings are “playing God.” What this means is that it is unethical for humans to emulate God; whatever is done by human beings when they play God would be utterly unnatural and will bring upon dire consequences. Here Daniel touches upon the question of whether advanced genetic research is ‘natural,’ a topic which is also taken up in detail by Somparn Promta in the first chapter. Varghese traces the origin on the playing God argument, one that chastises humans for transgressing the boundary between the mortal and the divine, and finds that there are two sources: the Augustinian view on ‘original sin’ and the Aristotelian-Aquinas thought on natural law. (There is also another strain of ‘playing God’ which is positive. Humans, being created in the image of God, have the duty for stewardship, thus taking over the role that God plays.) Here Daniel argues that such negative views on humans playing God do not have either a negative or positive role in Eastern (namely, Orthodox) Christianity. Here Daniel agrees with Somparn in that both do not view advanced research in genetic or other branches of science to be unnatural. Such research works cannot be unnatural because everything falls under the realm of cosmic law for Buddhism, or because in the eyes of God everything done by humans are only “human plays.” Daniel then concludes that playing God arguments are equivocal and hence do not have much force.

The next chapter, “A Philosophical Exploration of the Concept of ‘Property’ in Genetics and Databanking: Challenges for Bioethics in Asia and Europe,” by Ole Döring is the last chapter in Section One, and is a strong criticism of any attempt to argue that the human body, including the human genetic information, could be made available in the market as property or even to argue that the concept of property could be applicable to the human bodily parts or human DNA. Following Williams-Jones, who analyzes the tendency to materialize and commodify human bodily parts as arising from three factors, namely Cartesian dualism, materialist conception of the person, and the principle of self-determination or autonomy, all of which contribute to the idea that the human body is little more than an a clump of inert matter, Döring argues that the genetic information contained in matter such as DNA cannot be classified as property. He gives three reasons: DNA is too personal to be commodified; DNA is of familial nature; and commercialization of DNA runs the risk of exploitation of the disadvantaged. True to the German tradition of stressing the uncompromising importance of individual rights, Döring writes: “The true challenge for bioethics is not to organize the dissent that exists among those who already accept the foregoing cultural grammar of a qualified dualism of the human being that renders one part, quality or property of the human disposable (verfügbar) in principle. Ethics rather seeks to provide strong grounds to explain and argue for the unavailability (Unverfügbarkeit) of the human, for any reason or purpose.”  

Chapters in Section Two deal with more specific issues of legal situations in many countries, and they together provide a broad panorama where we can look at how different countries respond to the challenges posed by genetic sciences. Jakkrit Kuanpoth discusses the Thai legal mechanisms dealing with biotechnology in his paper (“Biotechnological Patents and Morality: A Critical View from a Developing Country”). He concentrates on the ethical aspect of patent law and how the global patent regime helps or hinders the development of a developing country such as Thailand. More specifically, Kuanpoth focuses his analysis on Article 27.3 of the World Trade Organization (WTO) Agreement on Trade-Related Aspects of Intellectual Property Rights (TRIPS), which states that countries may exclude plants and animals (but not micro-organisms) from patent protection, thus allow a leeway where developing countries could leverage against the multinational corporations from rich developed countries and protect the plant and animal varieties within their domains. Kuanpoth discusses the ongoing debates and the intricate interpretations being offered on this and other international regulations.

Still on the topic of genetics and the developing countries, the next paper by Eduardo Rodriguez and Fernando Lolas (“Social Issues Related To Gene Patenting At Latin America: A Bioethical Reflection”) reports the authors’ research experience about the level of knowledge and social representations of genomic research and its applications of experts (legal, biomedical researches) and lay people in relation to genomic medicine, the possibility of genetic manipulation and legal protections at Latin American developing countries, specifically Argentina, Chile, Mexico and Peru. The authors discuss issues such as little access to prevention and therapeutic methods related to genomic medicine in Latin America, risks associated to genetic modifications in humans, lack of equity in the access to health benefits, control by biotechnological companies, commercialization of gene sequences through patents which leads to commercial exploitation of underdeveloped countries, little participation of indigenous communities in the studies done on their DNA sometimes without proper informed consent, and the necessity of legal regulation to prevent the pathway towards enhancement genetic modifications or reproductive human cloning and of regulating access to genetic information.

Coming back from Latin America back to Asia again, the paper by Theofrantus Litaay, Dyah Hapsari Prananingrum, Yakub Adi Krisanto (“Indonesian Legal Perspectives on Biotechnology and Intellectual Property Rights”) looks at the situation in Indonesia. Many concerns that are voiced by Jakkrit and Rodriguez and Lolas are also raised by Litaay and this colleague in the case of Indonesia. More specifically, the authors focus their attention on the structure of Indonesian law and policies on biotechnology issues; they also address some issues related to bioethics and research activities and economic activities, such as the issue of bioprospecting and biopiracy, and how the legal and governance structure within Indonesia are designed to cope with this issue. It is not surprising that intellectual property issues loom large in these papers, as this is a very contentious issue between the developing and the developed word, an issue that merits much closer look and more careful research.

Brigitte Jansen’s chapter (“Human Biobanks: Selected Examples from and beyond Europe”) is a careful comparative study on ethical and legal aspects of human biobanks both in Europe and elsewhere. According to her the rapid expansion of human DNA sampling and data collecting in order to exploit and study the genetic information has taken place in the last few years, but the legal and ethical perception of this situation looks very different in European countries and beyond. Jansen chooses to focus her attention on the European Union, especially in Estonia, where a population wide gene back has been established; moreover, she also discusses what is happening in Macedonia, a relatively neglected country in eastern Europe. And outside of Europe she considers the cases in Australia, India and Israel. This makes for a very wide view of the biobank situation in many countries across the world, and thus makes her study a valuable one.

Turning back from a multi-country, comparative study, Terry Kaan’s chapter (“The Regulation of Genetic Testing and the Protection of Genetic and Medical Information in Singapore”) is a very detailed analysis of what is happening in one country, Singapore. As Singapore is among the forefront of countries pushing forward its biotechnology capabilities as a means for economic development, Kaan’s chapter presents a very interesting case study. Moreover, Singapore also has a well developed committee conducting studies and providing advice on bioethical issues. As a member of that committee and a law professor, Kaan is in a unique position to provide us with a view of what is happening there so that we could learn from the Singaporean experience. A particular focus of the chapter will be the tension between privacy concerns and the imperatives of access for biomedical research, given that biomedical research has been championed by the Singapore government as one of the future leading sectors of its economy. What is particularly interesting is Kaan’s discussion of what is known as “genetic exceptionalism,” the idea that genetic issues are special and deserve a number of special treatments. Kaan, however, thinks that the exception is not, or should not, be as strong as what its proponents take it to be. This weakening of genetic exceptionalism informs many decisions of the Singaporean Bioethics Advisory Committee.

The next chapter takes us from Singapore up north to Tajikistan. Firuza Nasyrova, in her “Legal Aspects of Bioethics in Tajikistan,” provides a detailed account of the available legal mechanisms on biotechnological issues in her country. She gives us a brief history of Tajikistan, telling us that one of world’s greatest philosophers, known in Latin as Avicenna, had his hometown in Tajikistan. She also discusses biosafety regulations, especially ones concerning the Cartagena Protocol, the topic also discussed by Jakkrit, Rodriguez and Litaay in their respective countries and regions, as well as the governance structure in Tajikistan on these issues.

In the fifteenth chapter, Sergio Romeo-Malanda, Dianne Nicol and Margaret Otlowski (“Genetic Testing and Protection of Genetic Privacy: A Comparative Legal Analysis in Europe and Australia”) bring us back to the topics of genetic testing and privacy, this time focusing on the similarities and differences in the legal mechanisms and regulatory frameworks in both regions. This comparison is interesting because the rationale for examining genetic issues in the European context is that the framework for personal data protection was established much earlier there than in other jurisdictions, and has undergone much greater scrutiny at the policy level. As such, the European approach provides one possible model that might be adopted much more broadly, especially if we take into consideration that the key legislative development in the field of genetic data is the recognition of the human right to privacy. In addition, the Australian perspective is also interesting because of the considerable attention given to the protection of genetic information in this country in recent years. There has in fact been a major national inquiry into the protection of human genetic information jointly conducted by the Australian Law Reform Commission and the Australian Health Ethics Committee of the National Health and Medical Research Council. The ensuing report, Essentially Yours 2003, made numerous recommendations for reform some of which have already been implemented with other changes in progress. These recent developments thus represent a useful counterpoint for analysis of the issues with regard to protecting genetic data.

The last chapter in the book, is Jürgen Simon’s and Jürgen Robienski’s “Property, Personality Rights and Data Protection with regard to Biobanks: A Layered System” is a discussion and analysis of the concept of property in the context of genetic research and biobanking. The authors are proposing a novel way of conceptualizing the concept of property, one which could unravel the difficulties that beset bioethical and legal debates on this issue. The issue concerns property rights to bodily material. Once a certain part of the body is taken out, to what extent could the person from whom the tissue has been separated claim property right over the tissue? According to Simon and Robietski, if the tissue is completely anonymized, then the person loses her right to claim the tissue to be her property. In this case if the former carrier of the tissue wants to maintain some ownership right, there must be a way to link the tissue anatomically to the carrier herself. This could be done by way of pseudonymization. The trustee model where the tissue is safeguarded and pseudonymized by a trustee could act as the middle path between complete retention of personal and property rights of the alienated tissue on the one hand, and complete disregard of the property or ownership rights to the tissue on the other. By having a trustee, it would be possible to negotiate for a proper way of benefit sharing whereby the former carrier of the tissue could get due shares of the benefits too.

1Further information about the Eighth Asian Bioethics Conference can be found on line at http://www.stc.arts.chula.ac.th/ABC2007/ More information about the workshop itself is available at http://www.stc.arts.chula.ac.th/ABC2007/AsiaEuropeWorkshop.html.

Author(s)/Editor(s) Biography

Soraj Hongladarom is an associate professor of philosophy and Director of the Center for Ethics of Science and Technology at Chulalongkorn University in Bangkok, Thailand. He has published books and articles on such diverse issues as bioethics, computer ethics, and the roles that science and technology play in the culture of developing countries. His concern is mainly on how science and technology can be integrated into the life-world of the people in the so-called Third World countries, and what kind of ethical considerations can be obtained from such relation. A large part of this question concerns how information technology is integrated in the lifeworld of the Thai people, and especially how such integration is expressed in the use of information technology in education. He is the editor, together with Charles Ess, of Information Technology Ethics: Cultural Perspectives, also published by IGI. His works have also appeared in Bioethics, The Information Society, AI & Society, Philosophy in the Contemporary World, and Social Epistemology, among others.

Indices

Editorial Board

  • Brigitte Jansen, BioEthicsLaw e.V., Germany; and University of Madras, India
  • Jürgen Simon, University of Luneburg, Germany
  • Margit Sutrop, Tartu University, Estonia
  • Carlos Romeo Casabona, University of Deusto, Spain
  • Anne Cambon-Thomsen, Universite Paul Sabatier, France
  • Le Dinh Luong, Vietnam National University, Vietnam
  • Somparn Promta, Chulalongkorn University, Thailand
  • Leonardo de Castro, National University of Singapore, Singapore; and University of the Philippines, Phillippines
  • Terry Kaan, National University of Singapore, Singapore
  • Chan Chee-Khoon, Universiti Sains Malaysia, Malaysia
  • Nares Damrongchai, National Science and Technology Development Agency, Thailand