The Law And Ethics Of Data Sharing In Health Sciences PDF Download
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| Author | : Marcelo Corrales Compagnucci |
| Publisher | : Springer Nature |
| Total Pages | : 211 |
| Release | : 2024-01-02 |
| Genre | : Law |
| ISBN | : 9819965403 |
Download The Law and Ethics of Data Sharing in Health Sciences Book in PDF, ePub and Kindle
Data sharing – broadly defined as the exchange of health-related data among multiple controllers and processors – has gained increased relevance in the health sciences over recent years as the need and demand for collaboration has increased. This includes data obtained through healthcare provisions, clinical trials, observational studies, public health surveillance programs, and other data collection methods. The practice of data sharing presents several notable challenges, however. Compliance with a complex and dynamic regulatory framework is essential, with the General Data Protection Regulation being a prominent example in a European context. Recent regulatory developments related to clinical trial transparency, trade secrecy, data access, AI training data, and health data spaces further contribute to the difficulties. Simultaneously, government initiatives often encourage scientists to embrace principles of “open data” and “open innovation.” The variety of regulations in this domain has the potential to impede widespread data sharing and hinder innovation. This edited volume, therefore, compiles comparative case studies authored by leading scholars from diverse disciplines and jurisdictions. The book aims to outline the legal complexities of data sharing. By examining real-world scenarios from diverse disciplines and a global perspective, it explores the normative, policy, and ethical dilemmas that surround data sharing in the health sciences today. Chapter Patient Perspectives on Data Sharing, Chapter Supplementary Measures and Appropriate Safeguards for International Transfers of Health Data after Schrems II are available open access under a Creative Commons Attribution 4.0 International License via link.springer.com.
| Author | : Sharona Hoffman |
| Publisher | : |
| Total Pages | : 0 |
| Release | : 2014 |
| Genre | : |
| ISBN | : |
Download Citizen Science Book in PDF, ePub and Kindle
Patient-related medical information is becoming increasingly available on the Internet, spurred by government open data policies and private sector data sharing initiatives. Websites such as HealthData.gov, GenBank, and PatientsLikeMe allow members of the public to access a wealth of health information. As the medical information terrain quickly changes, the legal system must not lag behind. This Article provides a base on which to build a coherent data policy. It canvasses emergent data troves and wrestles with their legal and ethical ramifications. Publicly accessible medical data have the potential to yield numerous benefits, including scientific discoveries, cost savings, the development of patient support tools, healthcare quality improvement, greater government transparency, public education, and positive changes in healthcare policy. At the same time, the availability of electronic personal health information that can be mined by any Internet user raises concerns related to privacy, discrimination, erroneous research findings, and litigation. This Article analyzes the benefits and risks of health data sharing and proposes balanced legislative, regulatory, and policy modifications to guide data disclosure and use.
| Author | : William W. Lowrance |
| Publisher | : Cambridge University Press |
| Total Pages | : 203 |
| Release | : 2012-06-21 |
| Genre | : Law |
| ISBN | : 1139510827 |
Download Privacy, Confidentiality, and Health Research Book in PDF, ePub and Kindle
The potential of the e-health revolution, increased data sharing, database linking, biobanks and new techniques such as geolocation and genomics to advance human health is immense. For the full potential to be realized, though, privacy and confidentiality will have to be dealt with carefully. Problematically, many conventional approaches to such pivotal matters as consent, identifiability, and safeguarding and security are inadequate. In many places, research is impeded by an overgrown thicket of laws, regulations, guidance and governance. The challenges are being heightened by the increasing use of biospecimens, and by the globalization of research in a world that has not globalized privacy protection. Drawing on examples from many developed countries and legal jurisdictions, the book critiques the issues, summarizes various ethics, policy, and legal positions (and revisions underway), describes innovative solutions, provides extensive references and suggests ways forward.
| Author | : National Academies of Sciences, Engineering, and Medicine |
| Publisher | : National Academies Press |
| Total Pages | : 115 |
| Release | : 2016-04-29 |
| Genre | : Science |
| ISBN | : 0309370884 |
Download Principles and Obstacles for Sharing Data from Environmental Health Research Book in PDF, ePub and Kindle
On March 19, 2014, the National Academies of Sciences, Engineering, and Medicine held a workshop on the topic of the sharing of data from environmental health research. Experts in the field of environmental health agree that there are benefits to sharing research data, but questions remain regarding how to effectively make these data available. The sharing of data derived from human subjects-making them both transparent and accessible to others-raises a host of ethical, scientific, and process questions that are not always present in other areas of science, such as physics, geology, or chemistry. The workshop participants explored key concerns, principles, and obstacles to the responsible sharing of data used in support of environmental health research and policy making while focusing on protecting the privacy of human subjects and addressing the concerns of the research community. Principles and Obstacles for Sharing Data from Environmental Health Research summarizes the presentations and discussions from the workshop.
| Author | : Jenny Krutzinna |
| Publisher | : Springer |
| Total Pages | : 198 |
| Release | : 2019-01-16 |
| Genre | : Medical |
| ISBN | : 3030043630 |
Download The Ethics of Medical Data Donation Book in PDF, ePub and Kindle
This open access book presents an ethical approach to utilizing personal medical data. It features essays that combine academic argument with practical application of ethical principles. The contributors are experts in ethics and law. They address the challenges in the re-use of medical data of the deceased on a voluntary basis. This pioneering study looks at the many factors involved when individuals and organizations wish to share information for research, policy-making, and humanitarian purposes. Today, it is easy to donate blood or even organs, but it is virtually impossible to donate one’s own medical data. This is seen as ethically unacceptable. Yet, data donation can greatly benefit the welfare of our societies. This collection provides timely interdisciplinary research on biomedical big data. Topics include the ethics of data donation, the legal and regulatory challenges, and the current and future collaborations. Readers will learn about the ethical and regulatory challenges associated with medical data donations. They will also better understand the special nature of using deceased data for research purposes with regard to ethical principles of autonomy, beneficence, and justice. In addition, the contributors identify the key governance issues of such a scheme. The essays also look at what we can learn in terms of best practice from existing medical data schemes.
| Author | : National Academies of Sciences, Engineering, and Medicine |
| Publisher | : National Academies Press |
| Total Pages | : 103 |
| Release | : 2019-01-28 |
| Genre | : Science |
| ISBN | : 030948247X |
Download Data Matters Book in PDF, ePub and Kindle
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.
| Author | : Barry Solaiman |
| Publisher | : Edward Elgar Publishing |
| Total Pages | : 433 |
| Release | : 2024-07-05 |
| Genre | : Law |
| ISBN | : 1802205659 |
Download Research Handbook on Health, AI and the Law Book in PDF, ePub and Kindle
This is an open access title available under the terms of a CC BY-NC-ND 4.0 License. It is free to read, download and share on Elgaronline, thanks to generous funding support from Hamad Bin Khalifa University (HBKU). The Research Handbook on Health, AI and the Law explores the use of AI in healthcare, identifying the important laws and ethical issues that arise from its use. Adopting an international approach, it analyses the varying responses of multiple jurisdictions to the use of AI and examines the influence of major religious and secular ethical traditions.
| Author | : Holly Fernandez Lynch |
| Publisher | : Cambridge University Press |
| Total Pages | : 373 |
| Release | : 2019-06-06 |
| Genre | : Law |
| ISBN | : 1108470998 |
Download Transparency in Health and Health Care in the United States Book in PDF, ePub and Kindle
Examines the impact of increased transparency on the legal, medical, and business structures of the American health care system.
| Author | : Carolyn Adams |
| Publisher | : Cambridge University Press |
| Total Pages | : 279 |
| Release | : 2022-06-09 |
| Genre | : Law |
| ISBN | : 1108619916 |
Download Sharing Linked Data for Health Research Book in PDF, ePub and Kindle
Health research around the world relies on access to data, and much of the most valuable, reliable, and comprehensive data collections are held by governments. These collections, which contain data on whole populations, are a powerful tool in the hands of researchers, especially when they are linked and analyzed, and can help to address “wicked problems” in health and emerging global threats such as COVID-19. At the same time, these data collections contain sensitive information that must only be used in ways that respect the values, interests, and rights of individuals and their communities. Sharing Linked Data for Health Research provides a template for allowing research access to government data collections in a regulatory environment designed to build social license while supporting the research enterprise.
| Author | : Ahmed Elngar |
| Publisher | : CRC Press |
| Total Pages | : 269 |
| Release | : 2021-03-09 |
| Genre | : Technology & Engineering |
| ISBN | : 1000349314 |
Download Data Protection and Privacy in Healthcare Book in PDF, ePub and Kindle
The Healthcare industry is one of the largest and rapidly developing industries. Over the last few years, healthcare management is changing from disease centered to patient centered. While on one side the analysis of healthcare data plays an important role in healthcare management, but on the other side the privacy of a patient’s record must be of equal concern. This book uses a research-oriented approach and focuses on privacy-based healthcare tools and technologies. It offers details on privacy laws with real-life case studies and examples, and addresses privacy issues in newer technologies such as Cloud, Big Data, and IoT. It discusses the e-health system and preserving its privacy, and the use of wearable technologies for patient monitoring, data streaming and sharing, and use of data analysis to provide various health services. This book is written for research scholars, academicians working in healthcare and data privacy domains, as well as researchers involved with healthcare law, and those working at facilities in security and privacy domains. Students and industry professionals, as well as medical practitioners might also find this book of interest.
