Federal regulation of human embryonic stem cell research

President George W. Bush's 2001 statement, which laid out guidelines for research that uses human embryonic stem cells to qualify for federal funding, intends to prevent new embryonic stem cell lines from being developed, by prohibiting the federal funding of research that uses embryonic stem cell lines other than those that existed at the time of the policy's inception and were approved by the National Institutes of Health. This policy raises questions of medical and technological ethics and the governments' role in making decisions regarding the advancement of science based on moral and political opinions. Federal stem cell usage policy directly affects scientific research efforts that are currently on the path to understanding the mechanisms of cell differentiation and could potentially offer answers and therapies for disabilities and many chronic diseases. By reviewing the current literature on the background information on human embryonic stem cells, including what they are, where they come from, how they are used for research purposes, and the ethical controversy surrounding their use, I have researched and reported the impact of the 2001 policy on medical research. ^ Both those who support the current policy on human embryonic stem cell research and those who are advocates for policy change have relevant arguments and varying opinions on human embryonic stem cell usage itself. The ethical implication of how embryonic stem cells are obtained has led to fierce debate. This paper presents many arguments for and against hESC research in addition to the policy governing their use. This analysis concludes that the current policy on federal funding of human embryonic stem cell research should be revised to allow research using new stem lines to be eligible for federal funding under specific guidelines. Supporting evidence for this recommendation is provided.^

Toward an inclusive and a little bit ethical world trading system : listening to the voices of the people in LDCs

Many specialists in international trade have started saying that the era of a mega FTA is approaching. If the three poles of the global economy, namely East Asia, EU and the United States, form mega FTAs, most of the volume of global trade will be covered. That may be fine, but there will be many countries left out of the mega FTA, most of which will be the least developed countries (LDCs). Since the inception of the Doha Development Agenda (DDA) negotiations in 2001, the WTO and its member countries have tried to include LDCs in the world trading system through various means, including DFQF and AfT. Although these means have some positive impact on the economic development of LDCs, most of the LDCs will never feel comfortable with the current world trading system. To overcome the stalemate in the DDA and to create an inclusive world trading system, we need more commitment from both LDCs and non-LDCs. To surmount the prolonged stalemate in the DDA, we should understand how ordinary people in LDCs feel and think about the current world trading system. Those voices have seldom been listened to, even by the decision makers of their own countries. So as to understand the situation of the people in LDCs, IDE-JETRO carried out several research projects using macro, meso and micro approaches. For the micro level, we collected and analyzed statements from ordinary people concerning their opinions about the world trading system. The interviewees are ordinary people such as street vendors, farmers and factory workers. We asked about where they buy and sell daily necessities, their perception of imported goods, export promotion and free trade at large, etc. These ‘voices of the people’ surveys were conducted in Madagascar and Cambodia during 2013. Based on this research, and especially the findings from the ‘voices of the people’ surveys, we propose a ‘DDA-MDGs hybrid’ strategy to conclude DDA negotiations and develop a more inclusive and a little bit more ethical world trading system. Our proposal may be summarized in the following three points. (1) Aid for Trade (AfT) ver. 2 Currently AfT is mainly focused on coordinating several aid projects related to LDCs’ capacity building. However, this is inadequate; for the proposed ‘DDA-MDGs hybrid’, a super AfT is needed. The WTO, other development agencies and LDC governments will not only coordinate but also plan together aid projects for trade capacity building. AfT ver. 2 includes infrastructure projects either gran aid, ODA loans and private investment. This is in accordance with the post-MDGs argument which emphasizes the role of the private sector. (2) Ethical Attitude Reciprocity is a principle of multilateral agreement, and it has been a core promise since GATT. However, for designing an inclusive system, special and differential treatment (S&D) is still needed for disadvantaged members. To compromise full reciprocity and less than full reciprocity, an ethical attitude on the part of every member is needed in which every member refrains from insisting on the full rights and demands of its own country. As used herein, the term ‘ethical’ implies more consideration for LDCs, and it is almost identical to S&D but with a more positive attitude from developed countries (super S&D). (3) Collect Voices of the People In order to grasp the real situation of the people, the voices of the people on free trade will continue to be collected in other LDCs, and the findings and leanings will be fed back to the WTO negotiation space.

Attitudes of the autism community to early autism research

Investigation into the earliest signs of autism in infants has become a significant sub-field of autism research. This work invokes specific ethical concerns such as use of 'at-risk' language, communicating study findings to parents and the future perspective of enrolled infants when they reach adulthood. This study aimed to ground this research field in an understanding of the perspectives of members of the autism community. Following focus groups to identify topics, an online survey was distributed to autistic adults, parents of children with autism and practitioners in health and education settings across 11 European countries. Survey respondents (n = 2317) were positively disposed towards early autism research, and there was significant overlap in their priorities for the field and preferred language to describe infant research participants. However, there were also differences including overall less favourable endorsement of early autism research by autistic adults relative to other groups and a dislike of the phrase 'at-risk' to describe infant participants, in all groups except healthcare practitioners. The findings overall indicate that the autism community in Europe is supportive of early autism research. Researchers should endeavour to maintain this by continuing to take community perspectives into account.

Ethical guidelines for the delivery of health services by DHEW : report and recommendations /

Includes bibliographical references

BEHIND THE COMPUTER SCREEN: WHAT IRB PROFESSIONALS REALLY THINK ABOUT SOCIAL MEDIA RESEARCH

Thesis (Master's)--University of Washington, 2016-06

Ethics and health systems research in 'post'-conflict situations

Although considerable attention has been given to ethical issues related to clinical research in developing countries, in particular related to HIV therapy, there has been limited focus on health systems research, despite its increasing importance in the light of current trends in development assistance. This paper examines ethical issues related to health systems research in 'post'-conflict situations, addressing both generic issues for developing countries and those issues specific to 'post'-conflict societies, citing examples from the author's Cambodian experience. It argues that the destruction of health infrastructure results in a loss of structures and processes that would otherwise protect prospective research subjects who are part of vulnerable populations. It identifies the growth of health systems research as part of a trend towards sectoral and programmatic development assistance, the emergence of 'knowledge generation' as a form of research linked to development, and the potential for conflict where multilateral and bilateral donors are both primary funders and users of health systems research. It also examines the position of the health system researcher in relation to the sponsors of this research, and the health system being analysed.

Using pharmacogenetics and pharmacogenomics in the treatment of psychiatric disorders: some ethical and economic considerations"

Current pharmacotherapies for psychiatric disorders are generally incompletely effective. Many patients do not respond well or suffer adverse reactions to these drugs, which can result in poor patient compliance and poor treatment outcome. Adverse drug reactions and non-response are likely to be influenced by genetic polymorphisms. Pharmacogenetics holds some promise for improving the treatment of mood disorders by utilising information about genetic polymorphisms to match patients to the drug therapy that is the most effective with the fewest side effects. Pharmacogenomics promises to facilitate the development of new drugs for treatment. However, these technologies raise many ethical, economic and regulatory issues that need to be addressed before they can be integrated into psychiatry, and medicine more generally. We discuss ethical and policy issues arising from pharmacogenetic testing and pharmacogenomics research, such as informed consent, privacy and confidentiality, research on vulnerable persons and discrimination; and economic viability of pharmacogenetics and pharmacogenomics. We conclude with recommendations for the regulation and distribution of pharmacogenetic testing services and pharmacogenomic drugs.

Shoot first, ask questions later: Ethnographic research in an online computer gaming community

For researchers investigating online communities, the existence of the internet has made the activities and opinions of community members visible in a public domain. FPS gaming culture is a highly literate culture - members communicate and represent themselves in textual forms online, and the culture makes use of a wide variety of communication and publishing technologies. While a significant amount of insider knowledge is required to understand and interpret such online content, a large body of material is available to researchers online, and sometimes provides more reliable and enlightening information than that generated by more traditional research methods. While the abundance of data available online in some ways makes research far easier, it also creates new dilemmas and challenges for researchers. What extra knowledge is required of the researcher? How can one ensure that one's interpretations of member statements are made with an understanding of meaning within that culture? What responsibilities does the researcher have in their representation of the culture under examination? What ethical issues must be considered?

Reflecting on ethical and legal issues in wildlife disease

Disease in wildlife raises a number of issues that have not been widely considered in the bioethical literature. However, wildlife disease has major implications for human welfare. The majority of emerging human infectious diseases are zoonotic: that is, they occur in humans by cross-species transmission from animal hosts. Managing these diseases often involves balancing concerns with human health against animal welfare and conservation concerns. Many infectious diseases of domestic animals are shared with wild animals, although it is often unclear whether the infection spills over from wild animals to domestic animals or vice versa. Culling is the standard means of managing such diseases, bringing economic considerations, animal welfare and conservation into conflict. Infectious diseases are also major threatening processes in conservation biology and their appropriate management by culling, vaccination or treatment raises substantial animal ethics issues. One particular issue of great significance in Australia is an ongoing research program to develop genetically modified pathogens to control vertebrate pests including rabbits, foxes and house mice. Release of any self-replicating GMO vertebrate pathogen gives rise to a whole series of ethical questions. We briefly review current Australian legal responses to these problems. Finally, we present two unresolved problems of general importance that are exemplified by wildlife disease. First, to what extent can or should 'bioethics' be broadened beyond direct concerns with human welfare to animal welfare and environmental welfare? Second, how should the irreducible uncertainty of ecological systems be accounted for in ethical decision making?

A cross-cultural study of the role of religion in consumers' ethical positions

Purpose - Previous studies have looked at how socio-economic and political factors play a role in consumers' ethical positions, but few have considered the role of religion which is a major driver of ethics. This paper seeks to address this. Design/methodology/approach - From a survey of over 700 consumers this paper explores the similarities and differences between consumers' ethical positions in three different religions namely; Christian (from three countries), Islam, and Buddhism. Findings - It was found that a reduced item scale measuring the two factors of Forsyth's idealism and relativism was applicable in all five religions, but variations were seen because of religious teachings. In particular, Austrian Christians were significantly less idealistic and relativistic than all other religions, even other Christians from the United States and Britain. Research limitations/implications - The results have implications for measuring ethical positions internationally and for developing ethically based marketing messages and products. Originality/value - The paper shows for the first time how ethical positions are affected by religions and should be of interest to marketers involved in ethics research and ethical marketing.

Does pharmacogenomics provide an ethical challenge to the utilisation of cost-effectiveness analysis by public health systems?

Pharmacogenomics promotes an understanding of the genetic basis for differences in efficacy or toxicity of drugs in different individuals. Implementation of the outcomes of pharmacogenomic research into clinical practice presents a number of difficulties for healthcare. This paper aims to highlight one of the Unique ethical challenges which pharmacogenomics presents for the utilisation of cost-effectiveness analysis by public health systems. This paper contends that pharmacogenomics provides a challenge to fundamental principles which underlie most systems for deciding which drugs should be publicly subsidised. Pharmacogenomics brings into focus the conflict between equality and utility in the context of using cost-effectiveness analysis to aid distribution of a limited national drug budget.

Ethical perspectives of the Australian live export trade

Objective To examine the ethical perspectives of the Australian live export trade. Design and method The perspectives of farmers and other industry personnel, overseas consumers, the Australian public, veterinarians and the assumed interests of transported animals are compared in relation to the ethical consequences. Animal welfare, societal, personal and professional ethics are identified and the ratification of different perspectives considered. Results and conclusions There are positive and negative aspects of the trade for each stakeholder group, and the overall position adopted by any individual reflects their perspective of the balance of these components. The debate as to whether Australia should continue with the trade will be best served by consideration of the interests of all parties in the trade, including the consumers and animals, which are among the most affected by the trade. There is a need for further research to address the major welfare problems for the animals, an openness to inspection on the part of the trade and balance in media reporting.

Cyber-rigging click-through rates: Exploring the ethical dimensions

Click-through rate is considered a very important metric and a key performance indicator of the success of online advertising and is the most frequently used measure to gauge the effectiveness of banner advertising. Marketers also use click-through rates in arriving at performance measurement activities such as the calculation of 'customer life time value' and 'customer acquisition cost'. Click-through is the second most frequently used banner ad pricing method after cost per thousand impressions. Online advertising is facing a new form of challenge – the artificial inflation of click-through rates. We call this practice 'cyber-rigging'. The objective of this paper is to explore the ethical dimensions of cyber-rigging through application of ethical principles and theories.