Whole-genome analysis and whole-exome analysis generate many more clinically actionable findings than traditional targeted genetic analysis. These findings may be relevant to research participants themselves as well as for members of their families. Though researchers performing genomic analyses are likely to find medically significant genetic variations for nearly every research participant, what they will find for any given participant is unpredictable. The ubiquity and diversity of these findings complicate questions about disclosing individual genetic test results. We outline an approach for (...) disclosing a select range of genetic results to the relatives of research participants who have died, developed in response to relatives? requests during a pilot study of large-scale medical genetic sequencing. We also argue that studies that disclose individual research results to participants should, at a minimum, passively disclose individual results to deceased participants? relatives. (shrink)

Background The use of lengthy, detailed, and complex informed consent forms is of paramount concern in biomedical research as it may not truly promote the rights and interests of research participants. The extent of information in ICFs has been the subject of debates for decades; however, no clear guidance is given. Thus, the objective of this study was to determine the perspectives of research participants about the type and extent of information they need when they are invited to participate in (...) biomedical research. Methods This multi-center, cross-sectional, descriptive survey was conducted at 54 study sites in seven Asia-Pacific countries. A modified Likert-scale questionnaire was used to determine the importance of each element in the ICF among research participants of a biomedical study, with an anchored rating scale from 1 to 5. Results Of the 2484 questionnaires distributed, 2113 were returned. The majority of respondents considered most elements required in the ICF to be ‘moderately important’ to ‘very important’ for their decision making. Major foreseeable risk, direct benefit, and common adverse effects of the intervention were considered to be of most concerned elements in the ICF. Conclusions Research participants would like to be informed of the ICF elements required by ethical guidelines and regulations; however, the importance of each element varied, e.g., risk and benefit associated with research participants were considered to be more important than the general nature or technical details of research. Using a participant-oriented approach by providing more details of the participant-interested elements while avoiding unnecessarily lengthy details of other less important elements would enhance the quality of the ICF. (shrink)

In the debates on the roles of cultures in the ethics of human rights, one of them concerns Confucianism and Ubuntu, two prominent cultures in East Asia and Southern Africa, respectively. Some scholars assert that both cultures have values that are sharply different from the West, and conclude that the West should learn from these cultures. The aim of this paper is to philosophically investigate the roles of cultures in the ethics of human rights. I first introduce the works of (...) Bell, Metz and others on community values such as relationships and harmony in Confucianism and Ubuntu. I then argue that even if their interpretations were correct, their works still would not justify the conclusion they want. I show that it is better to use consequential evaluation rather than cultural evaluation to justify human rights. An example of human rights to health and privacy is discussed. This paper thus offers some preliminary but important philosophical investigations and addresses practical issues of consequential evaluation related to human rights. Keywords : Confucianism, Ubuntu, Cultural Evaluation, Consequential Evaluation, Human Rights, Health, Privacy. (shrink)

There are many East and West debates on human rights. One of them is whether all civil and political rights are human rights. On one hand, scholars generally agree that rights to physical security are human rights. On the other hand, some scholars argue that rights to political liberty are only Western rights but not human rights because political liberty conflicts with some East Asian cultural factors, especially the Confucian tradition. I argue that physical security also conflicts with some parts (...) of the Confucian tradition, but rights to physical security are still human rights because physical security is a minimal value. I then argue that political liberty, similar to physical security, is also a minimal value. Therefore, similar to rights to physical security, rights to political liberty are also human rights, even though political liberty also conflicts with some parts of the Confucian tradition. (shrink)

The European Union approach to data protection consists of assessing the adequacy of the data protection offered by the laws of a particular jurisdiction against a set of principles that includes purpose limitation, transparency, quality, proportionality, security, access, and rectification. The EU's Data Protection Directive sets conditions on the transfer of data to third countries by prohibiting Member States from transferring to such countries as have been deemed inadequate in terms of the data protection regimes. In theory, each jurisdiction is (...) evaluated similarly and must be found fully compliant with the EU's data protection principles to be considered adequate. In practice, the inconsistency with which these evaluations are made presents a hurdle to international data-sharing and makes difficult the integration of different data-sharing approaches; in the 20 years since the Directive was first adopted, the laws of only five countries from outside of the EU, Economic Area, or the European Free Trade Agreement have been deemed adequate to engage in data transfers without the need for further administrative safeguards. (shrink)

This paper argues that substantive ethical rules serve a critical ethical function, even in those cases where we should deviate from those rules. Assuming that the rules are valid provides decision-makers with the context essential to reaching a well-justified decision. Recognizing this helps to reconcile two attractive but incompatible positions regarding the evaluation of healthcare ethics consultants. The first position is that ethical rules can validly be used to evaluate the quality of consultants’ advice, ensuring conformity to standards promoted by (...) a significant portion of medical ethicists. The second position—the message of ethical particularism—is that we should not evaluate consultants according to strict rules, since good ethical advice may deviate from even the most carefully wrought moral rules. Steering a path between these extremes, I argue that we should evaluate the quality of consultations by examining whether consultants have communicated the relevant ethical rules to participants as ethical presumptions. In communicating presumptions, a consultant provides an indispensable ingredient to ethical decision-making, while leaving open the possibility that the ethical course of action involves violating the very ethical rules that one should presume. (shrink)

Balfe argues against enhanced interrogation. He particularly focuses on the involvement of U.S. healthcare professionals in enhanced interrogation. He identifies several empirical and normative factors and argues that they are not good reasons to morally justify enhanced interrogation. I argue that his argument can be improved by making two points. First, Balfe considers the reasoning of those healthcare professionals as utilitarian. However, careful consideration of their ideas reveals that their reasoning is consequential rather than utilitarian evaluation. Second, torture is a (...) serious human rights abuse. When healthcare professionals become involved in enhanced interrogation, they violate not only human rights against torture but also human rights to health. Considering the consequential reasoning against human rights abuses, healthcare professionals’ involvement in enhanced interrogation is not morally justified. Supplementing Balfe’s position with these two points makes his argument more complete and convincing, and hence it can contribute to the way which shows that enhanced interrogation is not justified by consequential evaluation. (shrink)

The Deaf culture in the United States is a unique culture that is not widely understood. To members of the Deaf community in the United States, deafness is not viewed as a disease or pathology to be treated or cured; instead it is seen as a difference in human experience. Members of this community do not hide their deafness; instead they take great pride in their Deaf identity. The Deaf culture in the United States is very communitarian not individualistic. Mary (...) Beth and Dominic are a married couple in their late 20s who are genetically deaf. They are active members in the Deaf community and work as advocates for individuals who are deaf, family members of Deaf people and sign language interpreters who identify with the Deaf culture. Mary Beth and Dominic approach the fertility clinic with a request that they only want a child with the genetic gene for deafness. They would want the embryos that do not have the gene to be destroyed. This would entail creating a child who would have the gene for deafness. Medically and ethically, should the fertility clinic agree to the couple’s request? The authors argue that the couple's request should be denied and provide reasons for it from the perspectives of foundational and clinical ethics. (shrink)

With a population of over 1.3 billion, China is the most populous country in the world. It is facing an acute aging population problem, with a projected 440 million residents over age 60 and 101 million over age 80 by 2050. Furthermore, rapid industrialization and urbanization in China have resulted in serious air pollution and associated public health problems, including an increase in respiratory diseases and cancers. These and other demographic trends have generated concerns about the cost of health care (...) and its impact on population health. In recent years, the Chinese government has invested heavily in the fields of translational research and biobanking with the hope that research in both fields can yield effective solutions to improve the public’s health and quality of life. The establishment of national biobanks was identified as a major initiative needed for the biomedical industry in the 12th Five-Year National Development Plan of Strategic Emerging Industries promulgated by the State Council in 2012. (shrink)

With a population of over 1.3 billion, China is the most populous country in the world. It is facing an acute aging population problem, with a projected 440 million residents over age 60 and 101 million over age 80 by 2050. Furthermore, rapid industrialization and urbanization in China have resulted in serious air pollution and associated public health problems, including an increase in respiratory diseases and cancers. These and other demographic trends have generated concerns about the cost of health care (...) and its impact on population health. In recent years, the Chinese government has invested heavily in the fields of translational research and biobanking with the hope that research in both fields can yield effective solutions to improve the public’s health and quality of life. The establishment of national biobanks was identified as a major initiative needed for the biomedical industry in the 12th Five-Year National Development Plan of Strategic Emerging Industries promulgated by the State Council in 2012. (shrink)