Responsible Genomic Data Sharing

Responsible Genomic Data Sharing
Author: Xiaoqian Jiang,Haixu Tang
Publsiher: Academic Press
Total Pages: 210
Release: 2020-03-14
ISBN 10: 0128163399
ISBN 13: 9780128163399
Language: EN, FR, DE, ES & NL

Responsible Genomic Data Sharing Book Review:

Responsible Genomic Data Sharing: Challenges and Approaches brings together international experts in genomics research, bioinformatics and digital security who analyze common challenges in genomic data sharing, privacy preserving technologies, and best practices for large-scale genomic data sharing. Practical case studies, including the Global Alliance for Genomics and Health, the Beacon Network, and the Matchmaker Exchange, are discussed in-depth, illuminating pathways forward for new genomic data sharing efforts across research and clinical practice, industry and academia. Addresses privacy preserving technologies and how they can be applied to enable responsible genomic data sharing Employs illustrative case studies and analyzes emerging genomic data sharing efforts, common challenges and lessons learned Features chapter contributions from international experts in responsible approaches to genomic data sharing

Sharing Clinical Trial Data

Sharing Clinical Trial Data
Author: Institute of Medicine,Board on Health Sciences Policy,Committee on Strategies for Responsible Sharing of Clinical Trial Data
Publsiher: National Academies Press
Total Pages: 304
Release: 2015-04-20
ISBN 10: 0309316324
ISBN 13: 9780309316323
Language: EN, FR, DE, ES & NL

Sharing Clinical Trial Data Book Review:

Data sharing can accelerate new discoveries by avoiding duplicative trials, stimulating new ideas for research, and enabling the maximal scientific knowledge and benefits to be gained from the efforts of clinical trial participants and investigators. At the same time, sharing clinical trial data presents risks, burdens, and challenges. These include the need to protect the privacy and honor the consent of clinical trial participants; safeguard the legitimate economic interests of sponsors; and guard against invalid secondary analyses, which could undermine trust in clinical trials or otherwise harm public health. Sharing Clinical Trial Data presents activities and strategies for the responsible sharing of clinical trial data. With the goal of increasing scientific knowledge to lead to better therapies for patients, this book identifies guiding principles and makes recommendations to maximize the benefits and minimize risks. This report offers guidance on the types of clinical trial data available at different points in the process, the points in the process at which each type of data should be shared, methods for sharing data, what groups should have access to data, and future knowledge and infrastructure needs. Responsible sharing of clinical trial data will allow other investigators to replicate published findings and carry out additional analyses, strengthen the evidence base for regulatory and clinical decisions, and increase the scientific knowledge gained from investments by the funders of clinical trials. The recommendations of Sharing Clinical Trial Data will be useful both now and well into the future as improved sharing of data leads to a stronger evidence base for treatment. This book will be of interest to stakeholders across the spectrum of research--from funders, to researchers, to journals, to physicians, and ultimately, to patients.

Evaluating the Gap Between Research Ethics Review and Data Sharing in the Pediatric Infrastructure Sciences

Evaluating the Gap Between Research Ethics Review and Data Sharing in the Pediatric Infrastructure Sciences
Author: Vasiliki Rahimzadeh
Publsiher: Unknown
Total Pages: 135
Release: 2019
ISBN 10: 1928374650XXX
ISBN 13: OCLC:1190697198
Language: EN, FR, DE, ES & NL

Evaluating the Gap Between Research Ethics Review and Data Sharing in the Pediatric Infrastructure Sciences Book Review:

"BACKGROUND: Clinical progress in genomics-enabled learning health systems relies on the production, use and exchange of data, including from children. The policies and practices guiding proportionate governance of such production, access and exchange are, however, markedly limited in the pediatric genomics space. The need for policy-practice coherence in genomic data sharing can be accentuated when involving children, from whom data may require special protections. Absent understanding the ethical-legal bases upon which responsible pediatric data sharing rests, present and future children may not reap the benefits of a healthcare system that continuously ‘learns’ from the production, use and exchange of their data. The purpose of this thesis is twofold: to identify the ethical, legal, social and scientific factors that enable ‘responsible’ genomic and associated clinical data sharing involving children; and to develop a policy framework guiding responsible sharing for the pediatric genomics community in Canada. METHODS: A systematic review of reasons was combined with policy Delphi methods to develop the Key Implications of Data Sharing (KIDS) framework for pediatric genomics. Thematic content, and descriptive statistical analyses were used to understand how 12 Canadian pediatricians, genomic researchers, ethicists and bioethics scholars prioritize the ethical-legal, social and scientific policy positions outlined in the KIDS framework. RESULTS: The panel reached consensus on 9 of 12 original policy positions identified in the systematic review and refined during a key informant committee meeting of international data sharing experts. Discrepant views related to informational risks, data access and oversight of anonymized versus coded genomic data were primary sources of dissention. CONCLUSION: This thesis makes two contributions to the theory and practice of responsible data sharing involving children in Canada. First, it suggests that skepticism of data anonymization drives support for more stringent access controls and oversight when data involve children. Second, greater emphasis on data accountability—coupled with data security—could serve as a more effective policy lever to preserve patient trust in data sharing given rapid progress in computation, ensuring children remain at the forefront of genomic innovation"--

Discussion Framework for Clinical Trial Data Sharing

Discussion Framework for Clinical Trial Data Sharing
Author: Committee on Strategies for Responsible Sharing of Clinical Trial Data,Board on Health Sciences Policy,Institute of Medicine
Publsiher: National Academy Press
Total Pages: 72
Release: 2014-01-22
ISBN 10: 9780309297790
ISBN 13: 0309297796
Language: EN, FR, DE, ES & NL

Discussion Framework for Clinical Trial Data Sharing Book Review:

Sharing data generated through the conduct of clinical trials offers the promise of placing evidence about the safety and efficacy of therapies and clinical interventions on a firmer basis and enhancing the benefits of clinical trials. Ultimately, such data sharing - if carried out appropriately - could lead to improved clinical care and greater public trust in clinical research and health care. "Discussion Framework for Clinical Trial Data Sharing: Guiding Principles, Elements, and Activities" is part of a study of how data from clinical trials might best be shared. This document is designed as a framework for discussion and public comment. This framework is being released to stimulate reactions and comments from stakeholders and the public. The framework summarizes the committee's initial thoughts on guiding principles that underpin responsible sharing of clinical trial data, defines key elements of clinical trial data and data sharing, and describes a selected set of clinical trial data sharing activities.

Rare Diseases

Rare Diseases
Author: Zhan He Wu
Publsiher: BoD – Books on Demand
Total Pages: 248
Release: 2020-03-25
ISBN 10: 1838800239
ISBN 13: 9781838800239
Language: EN, FR, DE, ES & NL

Rare Diseases Book Review:

Rare diseases are a group of genetic disorders occurring in a small percentage of the population with the conditions being chronic but incurable. Approximately 7000 to 8000 different types have been identified and about 350 million people globally are affected in childhood and adulthood, resulting in enormous physical, mental, and psychological suffering and financial burden. It is imperative for medical scientists, clinicians, communities, and societies to ensure appropriate care is applied to ease the suffering of such patients. The extraordinary and unprecedented hallmark in the field of rare diseases has revolutionized modern human medicine with exciting and advancing developments of the genomic era over the last two decades. Patients with rare diseases have been receiving increasing benefits in care and life quality improvements than ever before. This book intends to share and exchange the advancing knowledge and experiences from the authors, who have the necessary expertise within the various topics and subjects in the research, diagnosis, and management of rare diseases. It is hoped they are able to provide further benefits to patients and families with the development of early and accurate diagnosis and effective therapies.

Sharing Research Data to Improve Public Health in Africa

Sharing Research Data to Improve Public Health in Africa
Author: National Academies of Sciences, Engineering, and Medicine,Division of Behavioral and Social Sciences and Education,Committee on Population
Publsiher: National Academies Press
Total Pages: 102
Release: 2015-09-18
ISBN 10: 0309378125
ISBN 13: 9780309378123
Language: EN, FR, DE, ES & NL

Sharing Research Data to Improve Public Health in Africa Book Review:

Sharing research data on public health issues can promote expanded scientific inquiry and has the potential to advance improvements in public health. Although sharing data is the norm in some research fields, sharing of data in public health is not as firmly established. In March 2015, the National Research Council organized an international conference in Stellenbosch, South Africa, to explore the benefits of and barriers to sharing research data within the African context. The workshop brought together public health researchers and epidemiologists primarily from the African continent, along with selected international experts, to talk about the benefits and challenges of sharing data to improve public health, and to discuss potential actions to guide future work related to public health research data sharing. Sharing Research Data to Improve Public Health in Africa summarizes the presentations and discussions from this workshop.

Direct to Consumer Genetic Testing

Direct to Consumer Genetic Testing
Author: National Research Council,Institute of Medicine,Board on Health Care Services,National Cancer Policy Forum,Board on Health Sciences Policy,Roundtable on Translating Genomic-Based Research for Health,Forum on Drug Discovery, Development, and Translation,Division on Earth and Life Studies,Board on Life Sciences,Policy and Global Affairs,Committee on Science, Technology, and Law
Publsiher: National Academies Press
Total Pages: 106
Release: 2011-01-16
ISBN 10: 0309162165
ISBN 13: 9780309162166
Language: EN, FR, DE, ES & NL

Direct to Consumer Genetic Testing Book Review:

Today, scores of companies, primarily in the United States and Europe, are offering whole genome scanning services directly to the public. The proliferation of these companies and the services they offer demonstrate a public appetite for this information and where the future of genetics may be headed; they also demonstrate the need for serious discussion about the regulatory environment, patient privacy, and other policy implications of direct-to-consumer (DTC) genetic testing. Rapid advances in genetic research already have begun to transform clinical practice and our understanding of disease progression. Existing research has revealed a genetic basis or component for numerous diseases, including Parkinson's disease, Alzheimer's disease, diabetes, heart disease, and several forms of cancer. The availability of the human genome sequence and the HapMap, plummeting costs of high-throughput screening, and increasingly sophisticated computational analyses have led to an explosion of discoveries of linkages between patterns of genetic variation and disease susceptibility. While this research is by no means a straight path toward better public health, improved knowledge of the genetic linkages has the potential to change fundamentally the way health professionals and public health practitioners approach the prevention and treatment of disease. Realizing this potential will require greater sophistication in the interpretation of genetic tests, new training for physicians and other diagnosticians, and new approaches to communicating findings to the public. As this rapidly growing field matures, all of these questions require attention from a variety of perspectives. To discuss some of the foregoing issues, several units of the National Academies held a workshop on August 31 and September 1, 2009, to bring together a still-developing community of professionals from a variety of relevant disciplines, to educate the public and policy-makers about this emerging field, and to identify issues for future study. The meeting featured several invited presentations and discussions on the many technical, legal, policy, and ethical questions that such DTC testing raises, including: (1) overview of the current state of knowledge and the future research trajectory; (2) shared genes and emerging issues in privacy; (3) the regulatory framework; and (4) education of the public and the medical community.

Genomic and Precision Medicine

Genomic and Precision Medicine
Author: Geoffrey S. Ginsburg,Huntington F Willard
Publsiher: Academic Press
Total Pages: 398
Release: 2016-11-22
ISBN 10: 0128006560
ISBN 13: 9780128006566
Language: EN, FR, DE, ES & NL

Genomic and Precision Medicine Book Review:

Genomic and Precision Medicine: Translation and Implementation highlights the various points along the continuum from health to disease where genomic information is impacting clinical decision-making and leading to more personalization of health care. The book pinpoints the challenges, barriers, and solutions that have been, or are being, brought forward to enable translation of genome based technologies into health care. A variety of infrastructure (data systems and EMRs), policy (regulatory, reimbursement, privacy), and research (comparative effectiveness research, learning health system approaches) strategies are also discussed. Readers will find this volume to be an invaluable resource for the translational genomics and implementation science that is required to fully realize personalized health care. Provides a comprehensive volume on the translation and implementation of biology into health care provision Presents succinct commentary and key learning points that will assist readers with their local needs for translation and implementation Includes an up-to-date overview on major ‘translational events’ in genomic and personalized medicine, along with lessons learned

Public Health Ethics

Public Health Ethics
Author: Ronald Bayer,Lawrence O. Gostin,Bonnie Steinbock,Bruce Jennings
Publsiher: Oxford University Press, USA
Total Pages: 418
Release: 2007
ISBN 10: 9780195180848
ISBN 13: 0195180844
Language: EN, FR, DE, ES & NL

Public Health Ethics Book Review:

As it seeks to protect the health of populations, public health inevitably confronts a range of critical ethical challenges. This volume brings together 25 articles that open up the terrain of the ethics of public health. It features topics such as tobacco and drug control, and infectious disease.

Sharing Clinical Research Data

Sharing Clinical Research Data
Author: Institute of Medicine,Board on Health Care Services,Board on Health Sciences Policy,Roundtable on Translating Genomic-Based Research for Health,National Cancer Policy Forum,Forum on Neuroscience and Nervous System Disorders,Forum on Drug Discovery, Development, and Translation
Publsiher: National Academies Press
Total Pages: 156
Release: 2013-06-07
ISBN 10: 0309268745
ISBN 13: 9780309268745
Language: EN, FR, DE, ES & NL

Sharing Clinical Research Data Book Review:

Pharmaceutical companies, academic researchers, and government agencies such as the Food and Drug Administration and the National Institutes of Health all possess large quantities of clinical research data. If these data were shared more widely within and across sectors, the resulting research advances derived from data pooling and analysis could improve public health, enhance patient safety, and spur drug development. Data sharing can also increase public trust in clinical trials and conclusions derived from them by lending transparency to the clinical research process. Much of this information, however, is never shared. Retention of clinical research data by investigators and within organizations may represent lost opportunities in biomedical research. Despite the potential benefits that could be accrued from pooling and analysis of shared data, barriers to data sharing faced by researchers in industry include concerns about data mining, erroneous secondary analyses of data, and unwarranted litigation, as well as a desire to protect confidential commercial information. Academic partners face significant cultural barriers to sharing data and participating in longer term collaborative efforts that stem from a desire to protect intellectual autonomy and a career advancement system built on priority of publication and citation requirements. Some barriers, like the need to protect patient privacy, pre- sent challenges for both sectors. Looking ahead, there are also a number of technical challenges to be faced in analyzing potentially large and heterogeneous datasets. This public workshop focused on strategies to facilitate sharing of clinical research data in order to advance scientific knowledge and public health. While the workshop focused on sharing of data from preplanned interventional studies of human subjects, models and projects involving sharing of other clinical data types were considered to the extent that they provided lessons learned and best practices. The workshop objectives were to examine the benefits of sharing of clinical research data from all sectors and among these sectors, including, for example: benefits to the research and development enterprise and benefits to the analysis of safety and efficacy. Sharing Clinical Research Data: Workshop Summary identifies barriers and challenges to sharing clinical research data, explores strategies to address these barriers and challenges, including identifying priority actions and "low-hanging fruit" opportunities, and discusses strategies for using these potentially large datasets to facilitate scientific and public health advances.

Data Matters

Data Matters
Author: National Academies of Sciences, Engineering, and Medicine,Policy and Global Affairs,Government-University-Industry Research Roundtable,Planning Committee for the Workshop on Ethics, Data, and International Research Collaboration in a Changing World
Publsiher: National Academies Press
Total Pages: 102
Release: 2019-01-28
ISBN 10: 030948247X
ISBN 13: 9780309482479
Language: EN, FR, DE, ES & NL

Data Matters Book Review:

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.

Uneven Ground

Uneven Ground
Author: David Eugene Wilkins,K. Tsianina Lomawaima
Publsiher: University of Oklahoma Press
Total Pages: 326
Release: 2001
ISBN 10: 9780806133959
ISBN 13: 0806133953
Language: EN, FR, DE, ES & NL

Uneven Ground Book Review:

In the early 1970s, the federal government began recognizing self-determination for American Indian nations. As sovereign entities, Indian nations have been able to establish policies concerning health care, education, religious freedom, law enforcement, gaming, and taxation. David E. Wilkins and K. Tsianina Lomawaima discuss how the political rights and sovereign status of Indian nations have variously been respected, ignored, terminated, and unilaterally modified by federal lawmakers as a result of the ambivalent political and legal status of tribes under western law.

Personal Genomes Accessing Sharing and Interpretation

Personal Genomes  Accessing  Sharing  and Interpretation
Author: Manuel Corpas,Stephan Beck,Gustavo Glusman,Mahsa Shabani
Publsiher: Frontiers Media SA
Total Pages: 135
Release: 2021-08-02
ISBN 10: 2889711277
ISBN 13: 9782889711277
Language: EN, FR, DE, ES & NL

Personal Genomes Accessing Sharing and Interpretation Book Review:

Genomic Epidemiology Data Infrastructure Needs for SARS CoV 2

Genomic Epidemiology Data Infrastructure Needs for SARS CoV 2
Author: National Academies of Sciences, Engineering, and Medicine,Division on Earth and Life Studies,Board on Life Sciences,Health and Medicine Division,Board on Health Sciences Policy,Committee on Data Needs to Monitor the Evolution of SARS-CoV-2
Publsiher: National Academies Press
Total Pages: 110
Release: 2020-10-29
ISBN 10: 0309680913
ISBN 13: 9780309680912
Language: EN, FR, DE, ES & NL

Genomic Epidemiology Data Infrastructure Needs for SARS CoV 2 Book Review:

In December 2019, new cases of severe pneumonia were first detected in Wuhan, China, and the cause was determined to be a novel beta coronavirus related to the severe acute respiratory syndrome (SARS) coronavirus that emerged from a bat reservoir in 2002. Within six months, this new virusâ€"SARS coronavirus 2 (SARS-CoV-2)â€"has spread worldwide, infecting at least 10 million people with an estimated 500,000 deaths. COVID-19, the disease caused by SARS-CoV-2, was declared a public health emergency of international concern on January 30, 2020 by the World Health Organization (WHO) and a pandemic on March 11, 2020. To date, there is no approved effective treatment or vaccine for COVID-19, and it continues to spread in many countries. Genomic Epidemiology Data Infrastructure Needs for SARS-CoV-2: Modernizing Pandemic Response Strategies lays out a framework to define and describe the data needs for a system to track and correlate viral genome sequences with clinical and epidemiological data. Such a system would help ensure the integration of data on viral evolution with detection, diagnostic, and countermeasure efforts. This report also explores data collection mechanisms to ensure a representative global sample set of all relevant extant sequences and considers challenges and opportunities for coordination across existing domestic, global, and regional data sources.

Clinical Genome Sequencing

Clinical Genome Sequencing
Author: Aad Tibben,Barbara B. Biesecker
Publsiher: Academic Press
Total Pages: 258
Release: 2019-03-30
ISBN 10: 0128133368
ISBN 13: 9780128133361
Language: EN, FR, DE, ES & NL

Clinical Genome Sequencing Book Review:

Clinical Genome Sequencing: Psychological Aspects thoroughly details key psychological factors to consider while implementing genome sequencing in clinical practice, taking into account the subtleties of genetic risk assessment, patient consent and best practices for sharing genomic findings. Chapter contributions from leading international researchers and practitioners cover topics ranging from the current state of genomic testing, to patient consent, patient responses to sequencing data, common uncertainties, direct-to-consumer genomics, the role of genome sequencing in precision medicine, genetic counseling and genome sequencing, genome sequencing in pediatrics, genome sequencing in prenatal testing, and ethical issues in genome sequencing. Applied clinical case studies support concept illustration, making this an invaluable, practical reference for this important and multifaceted topic area within genomic medicine. Features contributions from leading international researchers and practitioners versed in the psychosocial dimensions of genomic medicine implementation Presents clinical case studies that support concept illustration, making this an invaluable reference for students, researchers, and clinicians looking for practical guidance in this important and multifaceted topic area Details the current state of genomic testing, expectations of genome sequencing, patient consent, patient responses to sequencing data, uncertainties in genome sequencing, direct-to-consumer genome sequencing, and more

Progress and Challenges in Precision Medicine

Progress and Challenges in Precision Medicine
Author: Mukesh Verma,Debmalya Barh
Publsiher: Academic Press
Total Pages: 344
Release: 2016-12-22
ISBN 10: 0128095024
ISBN 13: 9780128095027
Language: EN, FR, DE, ES & NL

Progress and Challenges in Precision Medicine Book Review:

Progress and Challenges in Precision Medicine presents an insightful overview to the myriad factors of personalized and precision medicine. The availability of the human genome, large amounts of data on individual genetic variations, environmental interactions, influence of lifestyle, and cutting-edge tools and technologies for big-data analysis have led to the age of personalized and precision medicine. Bringing together a global range of experts on precision medicine, this book collects previously scattered information into one concise volume which covers the most important developments so far in precision medicine and also suggests the most likely avenues for future development. The book includes clinical information, informatics, public policy implications, and information on case studies. It is a useful reference and background work for students, researchers, and clinicians working in the biomedical and medical fields, as well as policymakers in the health sciences. Provides an overview of the growing field of precision medicine Contains chapters from geographically diverse experts in their field Explores important aspects of precision medicine, including applications, ethics, and development

Medical Data Sharing Harmonization and Analytics

Medical Data Sharing  Harmonization and Analytics
Author: Vasileios Pezoulas,Themis Exarchos,Dimitrios I Fotiadis
Publsiher: Academic Press
Total Pages: 382
Release: 2020-01-05
ISBN 10: 0128165596
ISBN 13: 9780128165591
Language: EN, FR, DE, ES & NL

Medical Data Sharing Harmonization and Analytics Book Review:

Medical Data Sharing, Harmonization and Analytics serves as the basis for understanding the rapidly evolving field of medical data harmonization combined with the latest cloud infrastructures for storing the harmonized (shared) data. Chapters cover the latest research and applications on data sharing and protection in the medical domain, cohort integration through the recent advancements in data harmonization, cloud computing for storing and securing the patient data, and data analytics for effectively processing the harmonized data. Examines the unmet needs in chronic diseases as a part of medical data sharing Discusses ethical, legal and privacy issues as part of data protection Combines data harmonization and big data analytics strategies in shared medical data, along with relevant case studies in chronic diseases

Public Health Genomics

Public Health Genomics
Author: Paul Lacaze,Gareth Baynam
Publsiher: Frontiers Media SA
Total Pages: 135
Release: 2019-10-17
ISBN 10: 2889630099
ISBN 13: 9782889630097
Language: EN, FR, DE, ES & NL

Public Health Genomics Book Review:

The use of human genetic data has the potential to significantly improve healthcare, however a range of scientific, ethical and practical implementation barriers remain.

Genetic Variation

Genetic Variation
Author: Michael R. Barnes,Gerome Breen
Publsiher: Humana Press
Total Pages: 388
Release: 2014-10-20
ISBN 10: 9781627038263
ISBN 13: 1627038264
Language: EN, FR, DE, ES & NL

Genetic Variation Book Review:

“Your genome is an email attachment” What a difference a few years can make? In 2001, to a global fanfare, the completion of the frst draft sequence of the human genome was announced. This had been a Herculean effort, involving thousands of researchers and millions of dollars. Today, a project to re-sequence 1,000 genomes is well underway, and within a year or two, your own “personal genome” is likely to be available for a few thousand pounds, a price that will undoubtedly decrease further. We are fast approaching the day when your genome will be available as an email attachment (about 4 Mb). The key to this feat is the fact that any two human genomes are more than 99% identical, so rather than representing every base, there is really only a requirement to store the 1% of variable sequence judged against a common reference genome. This brings us directly to the focus of this edition of Methods in Molecular Biology, Genetic Variation. The human genome was once the focus of biology, but now individual genome var- tion is taking the center stage. This new focus on individual variation ultimately democ- tizes biology, offering individuals insight into their own phenotype. But these advances also raise huge concerns of data misuse, misinterpretation, and misunderstanding. The immediacy of individual genomes also serves to highlight our relative ignorance of human genetic variation, underlining the need for more studies of the nature and impact of genetic variation on human phenotypes.

Genetic Responsibility

Genetic Responsibility
Author: Mack Lipkin
Publsiher: Springer Science & Business Media
Total Pages: 176
Release: 2012-12-06
ISBN 10: 1468421182
ISBN 13: 9781468421187
Language: EN, FR, DE, ES & NL

Genetic Responsibility Book Review:

The "Genetics, Man, and Society" symposium was a collaborative effort of the Task Force on Genetics and Reproduction at Yale University and the Youth Council of the American Association for the Advancement of Science (A. A. A. S. ). The Task Force on Genetics and Reproduction at Yale is a voluntary, inter-professional organization engaged in examination of ethical and social implications of medical and basic genetics. It is similar in purpose to the Hastings Institute of Society, Ethics, and Life Sciences and the Kennedy Center for the Study of Bioethics at Georgetown. The Youth Council of A. A. A. S. was a committee of the A. A. A. S. concerned with problems of young persons. The Youth Council had significant impact on the A. A. A. S. through the constitutional reform and a number of innovative programs including the Congressional Fellows and Regional Centers Program, and the Committees on Minorities and Women. The symposium was initially conceived by William Drayton and Richard A. Tropp and was arranged by us. The Task Force took primary responsibility for format and for selecting and inviting speakers. The Youth Council made the arrangements, raised the necessary funds and represented the organizers for post-symposium use of the materials including printed and taped publications. This volume contains the edited proceedings of the symposium plus the editors' perspective on it.