Author: National Academies of Sciences, Engineering, and Medicine
Publisher: National Academies Press
ISBN: 030948247X
Category : Science
Languages : en
Pages : 103
Book Description
In an increasingly interconnected world, perhaps it should come as no surprise that international collaboration in science and technology research is growing at a remarkable rate. As science and technology capabilities grow around the world, U.S.-based organizations are finding that international collaborations and partnerships provide unique opportunities to enhance research and training. International research agreements can serve many purposes, but data are always involved in these collaborations. The kinds of data in play within international research agreements varies widely and may range from financial and consumer data, to Earth and space data, to population behavior and health data, to specific project-generated dataâ€"this is just a narrow set of examples of research data but illustrates the breadth of possibilities. The uses of these data are various and require accounting for the effects of data access, use, and sharing on many different parties. Cultural, legal, policy, and technical concerns are also important determinants of what can be done in the realms of maintaining privacy, confidentiality, and security, and ethics is a lens through which the issues of data, data sharing, and research agreements can be viewed as well. A workshop held on March 14-16, 2018, in Washington, DC explored the changing opportunities and risks of data management and use across disciplinary domains. The third workshop in a series, participants gathered to examine advisory principles for consideration when developing international research agreements, in the pursuit of highlighting promising practices for sustaining and enabling international research collaborations at the highest ethical level possible. The intent of the workshop was to explore, through an ethical lens, the changing opportunities and risks associated with data management and use across disciplinary domainsâ€"all within the context of international research agreements. This publication summarizes the presentations and discussions from the workshop.
Data Matters
Author: National Academies of Sciences, Engineering, and Medicine
Publisher: National Academies Press
ISBN: 030948247X
Category : Science
Languages : en
Pages : 103
Book Description
In an increasingly interconnected world, perhaps it should come as no surprise that international collaboration in science and technology research is growing at a remarkable rate. As science and technology capabilities grow around the world, U.S.-based organizations are finding that international collaborations and partnerships provide unique opportunities to enhance research and training. International research agreements can serve many purposes, but data are always involved in these collaborations. The kinds of data in play within international research agreements varies widely and may range from financial and consumer data, to Earth and space data, to population behavior and health data, to specific project-generated dataâ€"this is just a narrow set of examples of research data but illustrates the breadth of possibilities. The uses of these data are various and require accounting for the effects of data access, use, and sharing on many different parties. Cultural, legal, policy, and technical concerns are also important determinants of what can be done in the realms of maintaining privacy, confidentiality, and security, and ethics is a lens through which the issues of data, data sharing, and research agreements can be viewed as well. A workshop held on March 14-16, 2018, in Washington, DC explored the changing opportunities and risks of data management and use across disciplinary domains. The third workshop in a series, participants gathered to examine advisory principles for consideration when developing international research agreements, in the pursuit of highlighting promising practices for sustaining and enabling international research collaborations at the highest ethical level possible. The intent of the workshop was to explore, through an ethical lens, the changing opportunities and risks associated with data management and use across disciplinary domainsâ€"all within the context of international research agreements. This publication summarizes the presentations and discussions from the workshop.
Publisher: National Academies Press
ISBN: 030948247X
Category : Science
Languages : en
Pages : 103
Book Description
In an increasingly interconnected world, perhaps it should come as no surprise that international collaboration in science and technology research is growing at a remarkable rate. As science and technology capabilities grow around the world, U.S.-based organizations are finding that international collaborations and partnerships provide unique opportunities to enhance research and training. International research agreements can serve many purposes, but data are always involved in these collaborations. The kinds of data in play within international research agreements varies widely and may range from financial and consumer data, to Earth and space data, to population behavior and health data, to specific project-generated dataâ€"this is just a narrow set of examples of research data but illustrates the breadth of possibilities. The uses of these data are various and require accounting for the effects of data access, use, and sharing on many different parties. Cultural, legal, policy, and technical concerns are also important determinants of what can be done in the realms of maintaining privacy, confidentiality, and security, and ethics is a lens through which the issues of data, data sharing, and research agreements can be viewed as well. A workshop held on March 14-16, 2018, in Washington, DC explored the changing opportunities and risks of data management and use across disciplinary domains. The third workshop in a series, participants gathered to examine advisory principles for consideration when developing international research agreements, in the pursuit of highlighting promising practices for sustaining and enabling international research collaborations at the highest ethical level possible. The intent of the workshop was to explore, through an ethical lens, the changing opportunities and risks associated with data management and use across disciplinary domainsâ€"all within the context of international research agreements. This publication summarizes the presentations and discussions from the workshop.
Casebook on Ethical Issues in International Health Research
Author: World Health Organization
Publisher: World Health Organization
ISBN: 9241547723
Category : Medical
Languages : en
Pages : 212
Book Description
I. Defining "research"--II. Issues in study design . -- III. Harm and benefit -- IV. Voluntary informed consent -- V. Standard of care -- VI. Obligations to participants and communities -- VII. Privacy and confidentiality -- VIII. Professional ethics.
Publisher: World Health Organization
ISBN: 9241547723
Category : Medical
Languages : en
Pages : 212
Book Description
I. Defining "research"--II. Issues in study design . -- III. Harm and benefit -- IV. Voluntary informed consent -- V. Standard of care -- VI. Obligations to participants and communities -- VII. Privacy and confidentiality -- VIII. Professional ethics.
Ethical Issues in International Biomedical Research
Author: James V. Lavery
Publisher:
ISBN: 0195179226
Category : Medical
Languages : en
Pages : 401
Book Description
Ethical Issues in International Biomedical Research is the definitive book on the ethics of research involving human subjects in developing countries. Using 21 actual case studies, it covers the most controversial topics, including the ethics of placebo research in Africa, what benefits should be provided to the community after completion of a research trial, how to address conflicts between IRBs in developed and developing countries, and undue inducement of poor people in developing countries. Each case is accompanied by two expert commentaries, written by many of the worlds leading experts in bioethics as well as new voices with research experience in developing countries. No other volume has this scope. Students in bioethics, public and international health, and ethics will find this book particularly useful.
Publisher:
ISBN: 0195179226
Category : Medical
Languages : en
Pages : 401
Book Description
Ethical Issues in International Biomedical Research is the definitive book on the ethics of research involving human subjects in developing countries. Using 21 actual case studies, it covers the most controversial topics, including the ethics of placebo research in Africa, what benefits should be provided to the community after completion of a research trial, how to address conflicts between IRBs in developed and developing countries, and undue inducement of poor people in developing countries. Each case is accompanied by two expert commentaries, written by many of the worlds leading experts in bioethics as well as new voices with research experience in developing countries. No other volume has this scope. Students in bioethics, public and international health, and ethics will find this book particularly useful.
International Ethical Guidelines for Biomedical Research Involving Human Subjects
Author: Council for International Organizations of Medical Sciences
Publisher: World Health Organization
ISBN:
Category : Law
Languages : en
Pages : 116
Book Description
The present text is the revised/updated version of the CIOMS International Ethical Guidelines for Biomedical Research Involving Human Subjects. It consists of 21 guidelines with commentaries. A prefatory section outlines the historical background and the revision process and includes an introduction an account of earlier instruments and guidelines a statement of ethical principles and a preamble. An Appendix lists the items to be included in the research protocol to be submitted for scientific and ethical review and clearance. The Guidelines relate mainly to ethical justification and scientific validity of research; ethical review; informed consent; vulnerability - of individuals groups communities and populations; women as research subjects; equity regarding burdens and benefits; choice of control in clinical trials; confidentiality; compensation for injury; strengthening of national or local capacity for ethical review; and obligations of sponsors to provide health-care services. They are designed to be of use to countries in defining national policies on the ethics of biomedical research involving human subjects applying ethical standards in local circumstances and establishing or improving ethical review mechanisms. A particular aim is to reflect the conditions and the needs of low-resource countries and the implications for multinational or transnational research in which they may be partners.
Publisher: World Health Organization
ISBN:
Category : Law
Languages : en
Pages : 116
Book Description
The present text is the revised/updated version of the CIOMS International Ethical Guidelines for Biomedical Research Involving Human Subjects. It consists of 21 guidelines with commentaries. A prefatory section outlines the historical background and the revision process and includes an introduction an account of earlier instruments and guidelines a statement of ethical principles and a preamble. An Appendix lists the items to be included in the research protocol to be submitted for scientific and ethical review and clearance. The Guidelines relate mainly to ethical justification and scientific validity of research; ethical review; informed consent; vulnerability - of individuals groups communities and populations; women as research subjects; equity regarding burdens and benefits; choice of control in clinical trials; confidentiality; compensation for injury; strengthening of national or local capacity for ethical review; and obligations of sponsors to provide health-care services. They are designed to be of use to countries in defining national policies on the ethics of biomedical research involving human subjects applying ethical standards in local circumstances and establishing or improving ethical review mechanisms. A particular aim is to reflect the conditions and the needs of low-resource countries and the implications for multinational or transnational research in which they may be partners.
The National Bioethics Advisory Commission
Author: Elisa Eiseman
Publisher: Rand Corporation
ISBN: 9780833033642
Category : Business & Economics
Languages : en
Pages : 206
Book Description
The National Bioethics Advisory Commission (NBAC) was established in 1995 to advise various government entities on issues arising from research on human biology and behavior. During its five-year tenure, NBAC submitted six reports to the White House containing 120 recommendations on several complex bioethical issues including the cloning of human beings and embryonic stem cell research. This study assesses NBAC's contribution to policymaking by tracking the response to NBAC's recommendations from the president, Congress, government, societies and foundations, other countries, and international groups.
Publisher: Rand Corporation
ISBN: 9780833033642
Category : Business & Economics
Languages : en
Pages : 206
Book Description
The National Bioethics Advisory Commission (NBAC) was established in 1995 to advise various government entities on issues arising from research on human biology and behavior. During its five-year tenure, NBAC submitted six reports to the White House containing 120 recommendations on several complex bioethical issues including the cloning of human beings and embryonic stem cell research. This study assesses NBAC's contribution to policymaking by tracking the response to NBAC's recommendations from the president, Congress, government, societies and foundations, other countries, and international groups.
The Immortal Life of Henrietta Lacks
Author: Rebecca Skloot
Publisher: Crown
ISBN: 0307589382
Category : Science
Languages : en
Pages : 386
Book Description
#1 NEW YORK TIMES BESTSELLER • “The story of modern medicine and bioethics—and, indeed, race relations—is refracted beautifully, and movingly.”—Entertainment Weekly NOW A MAJOR MOTION PICTURE FROM HBO® STARRING OPRAH WINFREY AND ROSE BYRNE • ONE OF THE “MOST INFLUENTIAL” (CNN), “DEFINING” (LITHUB), AND “BEST” (THE PHILADELPHIA INQUIRER) BOOKS OF THE DECADE • ONE OF ESSENCE’S 50 MOST IMPACTFUL BLACK BOOKS OF THE PAST 50 YEARS • WINNER OF THE CHICAGO TRIBUNE HEARTLAND PRIZE FOR NONFICTION NAMED ONE OF THE BEST BOOKS OF THE YEAR BY The New York Times Book Review • Entertainment Weekly • O: The Oprah Magazine • NPR • Financial Times • New York • Independent (U.K.) • Times (U.K.) • Publishers Weekly • Library Journal • Kirkus Reviews • Booklist • Globe and Mail Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor Southern tobacco farmer who worked the same land as her slave ancestors, yet her cells—taken without her knowledge—became one of the most important tools in medicine: The first “immortal” human cells grown in culture, which are still alive today, though she has been dead for more than sixty years. HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the atom bomb’s effects; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions. Yet Henrietta Lacks remains virtually unknown, buried in an unmarked grave. Henrietta’s family did not learn of her “immortality” until more than twenty years after her death, when scientists investigating HeLa began using her husband and children in research without informed consent. And though the cells had launched a multimillion-dollar industry that sells human biological materials, her family never saw any of the profits. As Rebecca Skloot so brilliantly shows, the story of the Lacks family—past and present—is inextricably connected to the dark history of experimentation on African Americans, the birth of bioethics, and the legal battles over whether we control the stuff we are made of. Over the decade it took to uncover this story, Rebecca became enmeshed in the lives of the Lacks family—especially Henrietta’s daughter Deborah. Deborah was consumed with questions: Had scientists cloned her mother? Had they killed her to harvest her cells? And if her mother was so important to medicine, why couldn’t her children afford health insurance? Intimate in feeling, astonishing in scope, and impossible to put down, The Immortal Life of Henrietta Lacks captures the beauty and drama of scientific discovery, as well as its human consequences.
Publisher: Crown
ISBN: 0307589382
Category : Science
Languages : en
Pages : 386
Book Description
#1 NEW YORK TIMES BESTSELLER • “The story of modern medicine and bioethics—and, indeed, race relations—is refracted beautifully, and movingly.”—Entertainment Weekly NOW A MAJOR MOTION PICTURE FROM HBO® STARRING OPRAH WINFREY AND ROSE BYRNE • ONE OF THE “MOST INFLUENTIAL” (CNN), “DEFINING” (LITHUB), AND “BEST” (THE PHILADELPHIA INQUIRER) BOOKS OF THE DECADE • ONE OF ESSENCE’S 50 MOST IMPACTFUL BLACK BOOKS OF THE PAST 50 YEARS • WINNER OF THE CHICAGO TRIBUNE HEARTLAND PRIZE FOR NONFICTION NAMED ONE OF THE BEST BOOKS OF THE YEAR BY The New York Times Book Review • Entertainment Weekly • O: The Oprah Magazine • NPR • Financial Times • New York • Independent (U.K.) • Times (U.K.) • Publishers Weekly • Library Journal • Kirkus Reviews • Booklist • Globe and Mail Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor Southern tobacco farmer who worked the same land as her slave ancestors, yet her cells—taken without her knowledge—became one of the most important tools in medicine: The first “immortal” human cells grown in culture, which are still alive today, though she has been dead for more than sixty years. HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the atom bomb’s effects; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions. Yet Henrietta Lacks remains virtually unknown, buried in an unmarked grave. Henrietta’s family did not learn of her “immortality” until more than twenty years after her death, when scientists investigating HeLa began using her husband and children in research without informed consent. And though the cells had launched a multimillion-dollar industry that sells human biological materials, her family never saw any of the profits. As Rebecca Skloot so brilliantly shows, the story of the Lacks family—past and present—is inextricably connected to the dark history of experimentation on African Americans, the birth of bioethics, and the legal battles over whether we control the stuff we are made of. Over the decade it took to uncover this story, Rebecca became enmeshed in the lives of the Lacks family—especially Henrietta’s daughter Deborah. Deborah was consumed with questions: Had scientists cloned her mother? Had they killed her to harvest her cells? And if her mother was so important to medicine, why couldn’t her children afford health insurance? Intimate in feeling, astonishing in scope, and impossible to put down, The Immortal Life of Henrietta Lacks captures the beauty and drama of scientific discovery, as well as its human consequences.
Ethical and Policy Issues in International Research
Author: United States. National Bioethics Advisory Commission
Publisher:
ISBN:
Category : Clinical trials
Languages : en
Pages : 166
Book Description
Publisher:
ISBN:
Category : Clinical trials
Languages : en
Pages : 166
Book Description
The Belmont Report
Author: United States. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research
Publisher:
ISBN:
Category : Ethics, Medical
Languages : en
Pages : 614
Book Description
Publisher:
ISBN:
Category : Ethics, Medical
Languages : en
Pages : 614
Book Description
Ethical and Policy Issues in International Research
Author: United States. National Bioethics Advisory Commission
Publisher:
ISBN: 9781931022132
Category : Clinical trials
Languages : en
Pages : 168
Book Description
Publisher:
ISBN: 9781931022132
Category : Clinical trials
Languages : en
Pages : 168
Book Description
Examining Core Elements of International Research Collaboration
Author: Institute of Medicine
Publisher: National Academies Press
ISBN: 0309216400
Category : Science
Languages : en
Pages : 128
Book Description
The globalization of science, engineering, and medical research is proceeding rapidly. The globalization of research has important implications for the U.S. research enterprise, for the U.S. government agencies, academic institutions, and companies that support and perform research, and for the world at large. As science and technology capabilities grow around the world, U.S.-based organizations are finding that international collaborations and partnerships provide unique opportunities to enhance research and training. At the same time, significant obstacles exist to smooth collaboration across national borders. Enhancing international collaboration requires recognition of differences in culture, legitimate national security needs, and critical needs in education and training. In response to these trends, the Government-University-Industry Research Roundtable (GUIRR) launched a Working Group on International Research Collaborations (I-Group) in 2008, following its meeting on New Partnerships on a Global Platform that June. As part of I-Group's continuing effort, a workshop on Examining Core Elements of International Research Collaboration was held July 26-27, 2010 in Washington, DC. One primary goal of the workshop is to better understand the risks involved in international research collaboration for organizations and individual participants, and the mechanisms that can be used to manage those risks. Issues to be addressed in the workshop include the following: (1) Cultural Differences and Nuances; (2) Legal Issues and Agreements; (3) Differences in Ethical Standards; (4) Research Integrity and the Responsible Conduct of Research; (5) Intellectual Property; (6) Risk Management; (7) Export Controls; and (8) Strategies for Developing Meaningful International Collaborations. The goal for the workshop and the summary, Examining Core Elements of International Research Collaboration, is to serve as an information resource for participants and others interested in international research collaborations. It will also aid I-Group in setting its future goals and priorities.
Publisher: National Academies Press
ISBN: 0309216400
Category : Science
Languages : en
Pages : 128
Book Description
The globalization of science, engineering, and medical research is proceeding rapidly. The globalization of research has important implications for the U.S. research enterprise, for the U.S. government agencies, academic institutions, and companies that support and perform research, and for the world at large. As science and technology capabilities grow around the world, U.S.-based organizations are finding that international collaborations and partnerships provide unique opportunities to enhance research and training. At the same time, significant obstacles exist to smooth collaboration across national borders. Enhancing international collaboration requires recognition of differences in culture, legitimate national security needs, and critical needs in education and training. In response to these trends, the Government-University-Industry Research Roundtable (GUIRR) launched a Working Group on International Research Collaborations (I-Group) in 2008, following its meeting on New Partnerships on a Global Platform that June. As part of I-Group's continuing effort, a workshop on Examining Core Elements of International Research Collaboration was held July 26-27, 2010 in Washington, DC. One primary goal of the workshop is to better understand the risks involved in international research collaboration for organizations and individual participants, and the mechanisms that can be used to manage those risks. Issues to be addressed in the workshop include the following: (1) Cultural Differences and Nuances; (2) Legal Issues and Agreements; (3) Differences in Ethical Standards; (4) Research Integrity and the Responsible Conduct of Research; (5) Intellectual Property; (6) Risk Management; (7) Export Controls; and (8) Strategies for Developing Meaningful International Collaborations. The goal for the workshop and the summary, Examining Core Elements of International Research Collaboration, is to serve as an information resource for participants and others interested in international research collaborations. It will also aid I-Group in setting its future goals and priorities.