While much attention has gone towards ethical, legal, and social implications of direct-to-consumer genetic testing over the past decades, the rise of new forms of consumer omics has largely escaped scrutiny. In this paper, we analyze the product descriptions, promotional messages, terms of service, and privacy policies of five epigenetic and seven microbiomic testing companies. The advent of such tests online represents a significant shift in consumer omics, from a focus on inherited molecules with genetic tests, to broader interest for (...) information about the lives of individuals, such as chronological and biological age, exposures, and lifestyle. Building on previous literature about direct-to-consumer genetic testing, and taking this shift into account, we identify limitations, gaps and inconsistencies in current practices and policies of the new companies. Best practice standards and regulations applicable across different omic sample and data types is a necessary first step in the promotion of responsible consumer omics. (shrink)

The prelims comprise: Introduction Definitions Informed Consent Waiver of Consent Reporting of Research Results to Subjects Considerations of Potential Harms to Others Publication and Dissemination of Research Results Professional Education and Responsibilities Conclusion Notes.

This paper addresses the ethical issues of secondary uses of samples collected for identification purposes following mass disasters. It studies norms governing secondary use of samples , ultimately concluding that limited secondary research uses of these samples should be permissible.

In lieu of an abstract, here is a brief excerpt of the content:Reviewed by:Charles Faulkner Bryan: His Life and MusicTerese M. VolkCarolyn Livingston, Charles Faulkner Bryan: His Life and Music ( Knoxville, TN: University of Tennessee Press, 2003)There are many biographical studies in music education history.1 Indeed, it seems one of the easiest fields in historical research to mine—that is, until the researcher finds him or herself in the midst of what could be a years-long endeavor. Then the choice is (...) to commit to the research or quit. Carolyn Livingston did not quit. Her research began in 1981, continued through twenty years of investigations, interviews, library searches, and analyses, and has culminated in Charles Faulkner Bryan: His Life and Music. This book is not just the usual sequence of events in the life of a musician. Rather, it is more like becoming acquainted with someone you have never met before, yet feel comfortable with immediately. Charles Faulkner Bryan is genuinely likeable, and Livingston brings the person of Bryan to the fore and lets his humanity shine through his life and his music.Charles Faulkner Bryan: His life and Music is divided into two sections (pre- and post-WWII), each with four chapters. Livingston looks at this musician from several perspectives: the composer, the educator, the researcher, and the man. Appalachian folk music is the theme that connects the chapters, as it connected the events in Bryan's life. [End Page 211]Chapter 1 focuses on Bryan's youth, during which he and his family discovered his musical abilities. From performing at school, to building his own "turtle uke,"2 to his studies at the Nashville Conservatory of Music, Livingston describes the family support behind his developing musicality. Chapter 2 shows the reader his humanity even more clearly. Livingston tells of his early career as a music educator at the Tennessee Polytechnic institute; his marriage; and his mentorship of a young Black singer, J. Robert Bradley. That Bryan, a white Southerner, gave voice lessons to Bradley was not only generally unheard of with segregation as it was in the United States during the 1930s, but was dangerous to his career as well. Bryan moved on to teach at Peabody College in Nashville and then worked for the Works Progress Administration (WPA) Music Program on the Tennessee Music Project. Later he became the assistant state coordinator for the Tennessee State Defense Council. During both of these service positions, he called for music education improvements in Tennessee. Commenting on his work during this period, Livingston says, "Bryan was both of his time and ahead of his time... grounded in reality and yet visionary."3In Chapter 3, Livingston gives the reader a review of the "status of folk music scholarship and performance" as it existed in the 1930s.4 She takes pains to introduce the folk music researchers and musicians who influenced Bryan in his work with Appalachian folk music: Lucien L. McDowell and Flora Lassiter McDowell, George Pullen Jackson, Charles Seeger, and John Jacob Niles. These connections and friendships were to influence his awareness of Appalachian folk music and would continue for the rest of his life. By 1945 he had come to be considered an authority on folk music in his own right and his vision of this music came to encompass "the ultimate meaning in representing America itself."5Chapter 4 traces Bryan's development as a composer. It is in this chapter that Livingston begins to incorporate analyses of Bryan's most popular compositions. Her reviews of these compositions are clear and detailed without being overly theoretical. Some of the selections she analyzes include "Charlottown," "The Ballad of the Harp Weaver," and the White Spiritual Symphony. The Symphony in particular shows his respect for the folk songs he incorporated in this composition. Indeed, as Livingston points out several times, he maintained the integrity of these songs in all his compositions and performances. Chapter 4 concludes with Bryan's academic achievements: a Guggenheim Fellowship for music composition and his acceptance at Yale University to study composition under Hindemith.Livingston continues the discussion and analyses of Bryan's compositions in Chapter 5, detailing his time at Yale. His completed choral works from this period include the "Bell... (shrink)

Genetic research has moved from Mendelian genetics to sequence maps to the study of natural human genetic variation at the level of the genome. This past decade of discovery has been accompanied by a shift in emphasis towards the ethical principles of reciprocity, mutuality, solidarity, citizenry and universality.

White women's racism has been the topic of many critiques, discussions and conflicts within British feminist theory and politics over the last fifty years, driven by women of colour's insistence that white feminists must take on board the significance of race in order to stop perpetuating racism. Yet still today, feminist academia and activism in Britain continues to be white-dominated and to participate in the reproduction of racism and whiteness. This article examines the role of dominant historical narratives of feminism (...) in enabling this reproduction, arguing that there is a direct correlation between how the feminist past is constructed in relation to race and racism and how feminist theory and politics are articulated in the present. Focussing on three contemporary feminist texts that address feminism itself as a subject, it highlights three techniques used in these texts that, it is argued, are commonly employed in the narrative reproduction of white feminist racism. These are: (1) the erasure of the work of British feminists of colour; (2) white feminist co-option of work by feminists of colour; and (3) the narration of feminist theory and politics as having ‘moved on’ from racism. These techniques lead to evasion of the topic of white feminist racism, both historically and in the present. They also reinforce the construction of British feminism as a story that belongs to white women. The article argues that in order to work towards ending white supremacy, white feminists must relinquish control of the feminist narrative and stop moving on from the topic of white feminist racism. (shrink)

Human reproductive cloning has become the most palpable example of the globalization of science. Throughout the world, events and conjectures in the media, such as the birth and death in the United Kingdom of the cloned sheep Dolly and projects to clone human beings by Korean scientists, by members of the Canadian-based Raelian cult, and by the Italian physician Antinori in an undisclosed country, have galvanized the political will of individual countries to ban human reproductive cloning.Yet, international attempts to harmonize (...) policies in the area of biomedical ethics and human research, such as the 1997 Council of Europe’s Convention on Human Rights and Biomedicine, and most recently, the United Nations’ efforts to adopt an international convention against human reproductive cloning, have been insufficient to trigger a substantial global policy design process on issues relating to these new technologies. (shrink)

Currently, the return of results in the domain of biobanking constitutes an ethical and legal quagmire, whether it involves population or specific clinical research studies. In light of the fact that population biobanks are often not seen as distinct from those biobanks created for disease research, as well as the uncertainty as to what “return of results” means concretely, this lexicon attempts to demystify the terminology. The terms — results, return, clinical significance, and utility — are discussed. Through an analysis (...) of international and national normative guidance on this issue, the authors propose a concordance of meaning and a simplified lexicon. (shrink)

Volume 19, Issue 5, May 2019, Page 36-38.

The last few years have witnessed the growth of large-scale, population genomics biobanks, which serve as longitudinal, gene-environment databases for future yet unspecified research. An international consortium, the Public Population Project in Genomics, builds harmonization tools for such biobanks and has catalogued numerous studies — at least 139 with over 10,000 banked participants and 34 with over 100,000. As their potential use for translational, clinical research draws near, it is opportune to clarify the duties of such biobanks to communicate results (...) to participants. To identify the potential obligations, some demystification of the terminology surrounding the return of results as found in international and national norms on biobanking generally is essential. On the whole, our proposed lexicon is based on a study of norms as found in national and international policies but excludes debates found in the literature. (shrink)

The article “Ethical Responsibilities for Companies that Process Personal Data” (McCoy et al. 2023) provides a principled and pragmatic ethical framework for companies collecting, sharing, and usin...

While the socio-ethical and legal issues surrounding clinical genetics have long been the subject of international interest, the thorny questions of genetic research and biobanking are more recent. Add to this the fact that national guidelines and laws usually precede international policymaking, and the delay in international approaches is understandable. In that regard, the United Nations Educational, Scientific and Cultural Organization’s 1997 Universal Declaration on the Human Genome and Human Rights is unique in its prospective guidance on genetic research. Also, (...) it is in the very nature of international normative instruments to be general, except on specific issues considered to be in the interest of humanity, such as research into human reproductive cloning or access to AIDS drugs. (shrink)

While the socio-ethical and legal issues surrounding clinical genetics have long been the subject of international interest, the thorny questions of genetic research and biobanking are more recent. Add to this the fact that national guidelines and laws usually precede international policymaking, and the delay in international approaches is understandable. In that regard, the United Nations Educational, Scientific and Cultural Organization’s 1997 Universal Declaration on the Human Genome and Human Rights is unique in its prospective guidance on genetic research. Also, (...) it is in the very nature of international normative instruments to be general, except on specific issues considered to be in the interest of humanity, such as research into human reproductive cloning or access to AIDS drugs. (shrink)

Volume 20, Issue 6, June 2020, Page 77-80.

This article outlines procedures for the feedback of individual research data to participants. This feedback framework was developed in the context of a personalized medicine research project in Canada. Researchers in this domain have an ethical obligation to return individual research results and/or material incidental findings that are clinically significant, valid and actionable to participants. Communication of individual research data must proceed in an ethical and efficient manner. Feedback involves three procedural steps: assessing the health relevance of a finding, re-identifying (...) the affected participant, and communicating the finding. Re-identification requires researchers to break the code in place to protect participant identities. Coding systems replace personal identifiers with a numerical code. Double coding systems provide added privacy protection by separating research data from personal identifying data with a third "linkage" database. A trusted and independent intermediary, the "keyholder", controls access to this linkage database. (shrink)

Rousseau in Drag is a provocative new interpretation of Rousseau's gender politics. Rosanne Terese Kennedy reads Rousseau's well-known but brief flirtation with cross-dressing as a starting point to dramatically reconsider the standard reading of Rousseau as a misogynist. This study argues that rather than a figure of misogyny, Rousseau challenges normative gender identites, the couple, and traditional kinship relations. Reading Rousseau's classical political and philosophical works alongside his literary texts, Kennedy offers us an alternative vision of both Rousseau's sexual (...) politics and his politics in general. (shrink)

The aim of this study was to increase understanding of how individual patient care and the ethical principles prescribed for nursing care are implemented in nursing documentation. The method used was a metasynthesis of the results of 14 qualitative research reports. The results indicate that individualized patient care is not visible in nurses’ documentation of care. It seems that nurses describe their tasks more frequently than patients’ experiences of their care. The results also show that the structure of nursing documentation (...) and the forms or manner of recording presupposed by the organization may prevent individual recording of patient care. In order to obtain visibility for good patient-centred and ethical nursing care, an effort should be made to influence how the content of nursing care is documented and made an essential part of individual patient care. If the content of this documentation does not give an accurate picture of care, patients’ right to receive good nursing care may not be realized. (shrink)

In today's multi-ethnic classroom, multiculturalism plays an increasingly vital role. What it is, how it developed, and what it means for education, especially music education, are the questions that form the essence of this book. Music, Education, and Multiculturalism traces the growth and development of multicultural music education in the United States from its start in the early 1900s to the present, and describes the state of multicultural music education internationally. Beginning with a discussion of the philosophical foundations surrounding multiculturalism, (...) Part I addresses the various definitions of multiculturalism and its associated problems and possibilities in both education at large and music education in particular. It offers a succinct discussion of the various philosophical concepts and rationales for a multicultural approach, and concludes with current thoughts and applications in music education. Part II follows multicultural music education in the U.S. as it paralleled changes in general education brought about by social and historical events. The last chapter in this section outlines multiculturalism in music education around the world. Part III focuses on the implications of multiculturalism for music education, both in teacher training and in classroom instruction. Designed to assist music educators at all levels in understanding and implementing multicultural education, Music, Education, and Multiculturalism provides suggestions for curricular development, offers teaching strategies, and provides practical applications including materials and methodologies. Combining personal narrative and oral history with the support of primary and archival documents, this text is essential reading for all students and teachers of the history and foundations of music education and of multiculturalism in general education. (shrink)

Re-contacting minors enrolled in research upon their reaching the age of majority or maturity to seek their autonomous consent to continue their participation is considered an ethical requirement. This issue has generally been studied in the context of minors who are actively involved in the research. However, what becomes of this issue when the minor has been withdrawn from the research or has been lost to follow-up? May researchers re-contact the minor at the age of majority or maturity under these (...) circumstances to seek the consent of the minor to re-join the research? In this paper, we explore the ethical permissibility of recontacting minors whose participation in research has ended, once they have reached the age of majority or maturity. In particular, we identify scenarios in which the participation of a minor in a research project may end and discuss factors that can help determine such an ethical permissibility. Finally, we discuss the practical and ethical challenges of re-contact and present re-consent models that may be used by researchers. (shrink)

In this paper, we outline the policy implications of mobile health research conducted at the international level. We describe the manner in which such research may have an international dimension and argue that it is not likely to be excluded from conventionally applicable international regulatory tools. We suggest that closer policy attention is needed for this rapidly proliferating approach to health research.

Mitochondrial replacement therapy (MRT), also called nuclear genome transfer and mitochondrial donation, is a new technique that can be used to prevent the transmission of mitochondrial DNA diseases. Apart from the United Kingdom, the first country to approve MRT in 2015, Australia became the second country with a clear regulatory path for the clinical applications of this technique in 2021. The rapidly evolving clinical landscape of MRT makes the elaboration and evaluation of the responsible use of this technology a pressing (...) matter. As jurisdictions with less strict or non-existent reproductive laws are continuing to use MRT in the clinical context, the need to address the underlying ethical issues surrounding MRT’s clinical translation is fundamental. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Reviewed by:Charles Faulkner Bryan: His Life and MusicTerese M. VolkCarolyn Livingston, Charles Faulkner Bryan: His Life and Music ( Knoxville, TN: University of Tennessee Press, 2003)There are many biographical studies in music education history.1 Indeed, it seems one of the easiest fields in historical research to mine—that is, until the researcher finds him or herself in the midst of what could be a years-long endeavor. Then the choice is (...) to commit to the research or quit. Carolyn Livingston did not quit. Her research began in 1981, continued through twenty years of investigations, interviews, library searches, and analyses, and has culminated in Charles Faulkner Bryan: His Life and Music. This book is not just the usual sequence of events in the life of a musician. Rather, it is more like becoming acquainted with someone you have never met before, yet feel comfortable with immediately. Charles Faulkner Bryan is genuinely likeable, and Livingston brings the person of Bryan to the fore and lets his humanity shine through his life and his music.Charles Faulkner Bryan: His life and Music is divided into two sections (pre- and post-WWII), each with four chapters. Livingston looks at this musician from several perspectives: the composer, the educator, the researcher, and the man. Appalachian folk music is the theme that connects the chapters, as it connected the events in Bryan's life. [End Page 211]Chapter 1 focuses on Bryan's youth, during which he and his family discovered his musical abilities. From performing at school, to building his own "turtle uke,"2 to his studies at the Nashville Conservatory of Music, Livingston describes the family support behind his developing musicality. Chapter 2 shows the reader his humanity even more clearly. Livingston tells of his early career as a music educator at the Tennessee Polytechnic institute; his marriage; and his mentorship of a young Black singer, J. Robert Bradley. That Bryan, a white Southerner, gave voice lessons to Bradley was not only generally unheard of with segregation as it was in the United States during the 1930s, but was dangerous to his career as well. Bryan moved on to teach at Peabody College in Nashville and then worked for the Works Progress Administration (WPA) Music Program on the Tennessee Music Project. Later he became the assistant state coordinator for the Tennessee State Defense Council. During both of these service positions, he called for music education improvements in Tennessee. Commenting on his work during this period, Livingston says, "Bryan was both of his time and ahead of his time... grounded in reality and yet visionary."3In Chapter 3, Livingston gives the reader a review of the "status of folk music scholarship and performance" as it existed in the 1930s.4 She takes pains to introduce the folk music researchers and musicians who influenced Bryan in his work with Appalachian folk music: Lucien L. McDowell and Flora Lassiter McDowell, George Pullen Jackson, Charles Seeger, and John Jacob Niles. These connections and friendships were to influence his awareness of Appalachian folk music and would continue for the rest of his life. By 1945 he had come to be considered an authority on folk music in his own right and his vision of this music came to encompass "the ultimate meaning in representing America itself."5Chapter 4 traces Bryan's development as a composer. It is in this chapter that Livingston begins to incorporate analyses of Bryan's most popular compositions. Her reviews of these compositions are clear and detailed without being overly theoretical. Some of the selections she analyzes include "Charlottown," "The Ballad of the Harp Weaver," and the White Spiritual Symphony. The Symphony in particular shows his respect for the folk songs he incorporated in this composition. Indeed, as Livingston points out several times, he maintained the integrity of these songs in all his compositions and performances. Chapter 4 concludes with Bryan's academic achievements: a Guggenheim Fellowship for music composition and his acceptance at Yale University to study composition under Hindemith.Livingston continues the discussion and analyses of Bryan's compositions in Chapter 5, detailing his time at Yale. His completed choral works from this period include the "Bell... (shrink)

The rapid rise of international collaborative science has enabled access to genomic data. In this article, it is argued that to move beyond mapping genomic variation to understanding its role in complex disease aetiology and treatment will require extending data sharing for the purposes of clinical research translation and implementation.

BackgroundGlobal collaboration in genomic research is increasingly both a scientific reality and an ethical imperative. This past decade has witnessed the emergence of six new, interconnected areas of ethical consensus and emphasis for policy in genomics: governance, security, empowerment, transparency, the right not to know, and globalization.DiscussionThe globalization of genomic research warrants an approach to governance policies grounded in human rights.SummaryA human rights approach activates the ethical principles underpinning genomic research. It lends force to the right of all citizens to (...) benefit from scientific progress, and to the right of all scientists to be recognized for their contributions. (shrink)

This book of selected papers covers population research and banking as well as accompanying confidentiality, and governance concerns.