Darryl Macer

Changing attitudes to biotechnology in Japan

Support for biotechnology in Japan is declining, although it remains higher than the US or Europe.

Community Engagement and Informed Consent in the International HapMap Project

The International HapMap Consortium has developed the HapMap, a resource that describes the common patterns of human genetic variation (haplotypes). Processes of community/public consultation and individual informed consent were implemented in each locality where samples were collected to understand and attempt to address both individual and group concerns. Perceptions about the research varied, but we detected no critical opposition to the research. Incorporating community input and responding to concerns raised was challenging. However, the experience suggests that approaching genetic variation research in a spirit of openness can help investigators better appreciate the views of the communities whose samples they seek to study and help communities become more engaged in the science.

Heroes of SARS: professional roles and ethics of health care workers

Summary Objectives. To examine the professional moral duty of health care workers (HCWs) in the outbreak of severe acute respiratory syndrome (SARS) in 2003. Methods. Descriptive discussion of media reports, analysis of ethical principles and political decisions discussed in the outbreak, with particular emphasis on the events in mainland China and Taiwan. Results. There were differences in the way that Taiwan and mainland China responded to the SARS epidemic, however, both employed techniques of hospital quarantine. After early policy mistakes in both countries HCWs were called heroes. The label ‘hero’ may not be appropriate for the average HCW when faced with the SARS epidemic, although a number of self-less acts can be found. The label was also politically convenient. Conclusions. A middle ground for reasonable expectations from HCW when treating diseases that have serious risk of infection should be expected. While all should act according to the ethic of beneficence not all persons should be expected to be martyrs for society.

HUGO Urges Genetic Benefit-Sharing

In view of the fact that for-profit enterprise exceeds public expenditures on genetic research and that benefits from the Human Genome Project may accrue only to rich people in rich nations, the HUGO Ethics Committee discussed the necessity of benefit-sharing. Discussions involved case examples ranging from single-gene to multifactorial disorders and included the difficulties of defining community, especially when multifactorial diseases are involved. The Committee discussed arguments for benefit-sharing, including common heritage, the genome as a common resource, and three types of justice: compensatory, procedural, and distributive. The Committee also discussed the importance of community participation in defining benefit, agreed that companies involved in health have special obligations beyond paying taxes, and recommended they devote 1–3% of net profits to healthcare infrastructure or humanitarian efforts.

High School Teaching of Bioethics in New Zealand, Australia and Japan

Abstract An International Bioethics Education Survey was conducted in Australia (A), Japan (J) and New Zealand (NZ) in mid‐1993. National random samples of high schools were selected, and mail response questionnaires were sent to a biology (b) and a social studies (s) teacher at each school through the principals. The number of respondents and response rate were: NZb 206 (55%), NZs 96 (26%), Ab 251 (48%), As 114 (22%), Jb 560 (40%) and Js 383 (27%). This paper compares knowledge and teaching of 15 selected topics related to bioethics and biotechnology, with particular focus on the teaching of social, ethical and environmental issues of in vitro fertilisation, prenatal diagnosis, biotechnology, nuclear power, pesticides and genetic engineering. The survey found that these issues were, generally, covered more in biology classes than in social science classes; and that there were differences in coverage among the three countries, with most coverage in Australia and least in Japan. Open questions looked at im...

Animal experiments and bioethics in high schools in Australia, Japan, and New Zealand

The attitudes to animal experiments among teachers in Australia, Japan, and New Zealand reveal some differences in the way bioethical concerns are expressed Attitudes to, and the practice of, animal experiments were surveyed in Australia (A), Japan (J), and New Zealand (NZ) in 1993. Mail response questionnaires were sent to a biology (b) and a social studies (s) teacher at randomly selected schools. The number of respondents and response rate were: NZb 206 (55 per cent), NZs 96 (26 per cent), Ab251 (48 percent), As 1 14 (22 percent), Jb560 (40 percent) andjs 383 (27 percent). Open questions looking at the images of bioethics, and the reasons why about 90 per cent of teachers thought bioethics was needed in education, found more teachers expressed concerns about animal rights or experiments in New Zealand, than Australia, and least in Japan. Among the biology teachers, 90 per cent in New Zealand use animals in class, 71 per cent in Australia and 69 per cent in Japan. About two-thirds of all the samples sai...

A sense of autonomy is preserved under Chinese reproductive policies.

China has had a one-child family policy since 1979 and a National Family Planning Law since 2002. This paper presents analysis of comments from members of the general public and experts in China on the question of reproductive autonomy. The Chinese concept of ‘Yousheng’ (healthy birth) is more appropriate than eugenics as an expression of Chinese social policy and public attitudes. The widespread support for healthy birth has policy implications. None of the persons interviewed said that they had ever used ultrasound to choose the gender of their child nor had an abortion for the reason of a fetuss gender. Despite the bad impression of abortion from their experience, most would abort a fetus with a genetic disease. Respondents in rural areas were less likely to use prenatal care, pointing to more important social problems in reproduction in China. The impressions given from the survey stands in contrast to the implications of the majority of Western papers on the Chinese situation, and indicate that people are generally satisfied with the ethical balance towards the societal needs over individual autonomy, but they still have a sense of reproductive autonomy. There needs to be further study into these issues with larger surveys and interview studies.

Patent or perish? An ethical approach to patenting human genes and proteins

The morality of patents and the system to enforce them has been one of the more controversial aspects of biotechnology. Of all the areas of modern science and technology that involve intellectual property protection, it is the patenting of biotechnology inventions, and specifically genes, that has captured the greatest public attention and controversy. Although early patents on medical products of biotechnology, such as insulin, and early genetic engineering techniques have expired, there is an expanding rate of new patent applications for novel gene and protein discoveries, and new processes. The patents include claims for genomic DNA sequences, complementary DNAs, individual mutations, expressed sequence tags (ESTs) and single nucleotide polymorphisms (SNPs). The coverage of these patents and their enforcement has global implications, between the private and public sector and between rich and poor countries. Like the technology that intellectual property (IP) protection is applied to protect, IP protection is a system that needs to be subject to ethical analysis to examine whether it is suitable for a moral society. The question of how many patents were issued has become an annual question asked of academic researchers around the world. Previously, this was an expectation limited to those working in industry, but it has spread through government departments and universities, as witnessed by the distribution of gene patents. We can ask whether the old axiom, ‘publish or perish’, can be complemented by a new axiom, ‘patent or perish’? While there are many contentious areas of biotechnology regarding IP protection, like stem cells, this article focuses on human genes and proteins because the criteria of human DNA, or human experiments, are objective selection criteria that can be used as markers for ethical review in a patent application. The principles outlined here can be applied to many other areas, and may be cloudy when hydrid genes are constructed between species, but use the model of human genetic information represented in any form: DNA, mRNA, cDNA or protein. We can ask whether the patenting of genes is an ethical activity, and if so, what conditions might make it more ethical. There have been objections by scientists for the extension of IP protection into areas that were previously in the public domain, with debates over cases such as ESTs and basic research tools like polymerase chain reaction (PCR). The European Biotechnology Directive, emphasizes that patent law is not the forum to make a judgement on what types of research should be conducted or commercialized. However, as for any human activity where decisions must be made, both stages have moral implications. We can consider two distinct stages in the patent system: the process leading up to the award of the patent, and the implementation and enforcement system. There are grounds already established for the exclusion of patentability based on ethical concerns in a number of patent systems, and these date back to more than a century. Article 53(a) in the European Patent Convention, and Article 6 in the Directive, says ‘if the exploitation of the invention would be contrary to morality’ a patent shall not be granted. These grounds are part of the societal governance of biotechnology, attempting to lead research in ways that are consistent with social values. If patent offices consider the ethical issues relating to inventions, they can provide an additional social mechanism for society to guide research interests, beyond the limits that are already partially imposed on publicly funded research, by limiting the fields of research that can receive public funds. Ethically, one can start by asking rather simple questions. Is the principle of beneficence, or loving good, served more by having research than by not having research, and do we generate more research into more beneficial areas of science encouraged by the incentive system of patents than we would by not having patents? Are other ethical principles such as justice and doing no harm served by systems of intellectual property protection? Does it make any difference whether the product or process involves living organisms or rocks? Should practical law be expected to share the same goals as that of ethics, namely can we expect laws that reflect social ethics, or should we be satisfied with some compromise? Ethically, can anyone own a product of their mind, a product of nature, a product of a designed process, a discovery, or even an invention? Intellectual property rights (IPRs) are the rights given to persons over the The Pharmacogenomics Journal (2002) 2, 361–366 & 2002 Nature Publishing Group All rights reserved 1470-269X/02

Challenges to public engagement in science and technology in Japan: experiences in the HapMap Project

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Policy and Attitudes towards Collection of Personal DNA in genetic databases in Japan

Public engagement in science and technology has grown in importance as developments in science and technology make increasingly significant impacts on peoples lives. Now, efforts to engage publics in social decision-making or consensus-building regarding science and technology involve participation, learning or deliberation opportunities, as well as interactive or coproductive efforts among various sectors in society based on the recognition of scientific activities as a part of social operations - even those performed by scientific communities. We have conducted a community engagement program in the HapMap project, the international human genome program, in Japan since 2002. Consequent upon our various approaches to engage Japanese publics, a range of observations were made, such as that: public engagement is not yet recognized or institutionalized in Japan; there is a wide gap between science and society; and the implications of public engagement in a Japanese context have not been examined enthusiastically, especially from the perspectives of political decision making, social consensus-building or self-determination. In this paper, we provide an overview of public engagement in Japan, and discuss issues and challenges raised by the HapMap community engagement project. We also discuss the implications of public engagement for social decision-making and self-determination, and explore the prospects for public engagement in science and technology in Japan.