Fulfilling the Promise of Genetics Research


Book Description







Fulfilling the Promise of Genetics Research


Book Description




Fulfilling the Promise of Genetics Research


Book Description

Hearing on S. 318 to prohibit discrimination on the basis of genetic info. with respect to health insurance. Witnesses: Francis Collins, Nat. Human Genome Research Inst.; Kathleen Zeitz, Nebraska lead coordinator, Nat. Breast Cancer Coalition; David Escher, employee, Burlington Northern Santa Fe RR; Nat. Partnership for Women & Families, prepared statement; Bonnie Lipton, pres., Hadassah; Ronald Weich, leg. consultant, Amer. Civil Liberties Union; Jeremy Gruber, legal dir., Nat. Workrights Inst.; Michael Watson, Amer. College of Med. Genetics; Nat. Hemophilia Fdn., prepared state.; & Sen. Edward Kennedy, Michael Enzi, Tim Hutchinson, Bill Frist, Thomas Daschle, Barbara Mikulski, Tom Harkin, Susan Collins, & Olympia Snow.




Heritable Human Genome Editing


Book Description

Heritable human genome editing - making changes to the genetic material of eggs, sperm, or any cells that lead to their development, including the cells of early embryos, and establishing a pregnancy - raises not only scientific and medical considerations but also a host of ethical, moral, and societal issues. Human embryos whose genomes have been edited should not be used to create a pregnancy until it is established that precise genomic changes can be made reliably and without introducing undesired changes - criteria that have not yet been met, says Heritable Human Genome Editing. From an international commission of the U.S. National Academy of Medicine, U.S. National Academy of Sciences, and the U.K.'s Royal Society, the report considers potential benefits, harms, and uncertainties associated with genome editing technologies and defines a translational pathway from rigorous preclinical research to initial clinical uses, should a country decide to permit such uses. The report specifies stringent preclinical and clinical requirements for establishing safety and efficacy, and for undertaking long-term monitoring of outcomes. Extensive national and international dialogue is needed before any country decides whether to permit clinical use of this technology, according to the report, which identifies essential elements of national and international scientific governance and oversight.




Unnatural Selection


Book Description

In this timely, provocative new book, Lois Wingerson explores advances in human genetic research--and how these advances are redefining the way we view ourselves and our world. Every week brings word of new genetic findings. It no longer startles us to read that a gene has been identified that predisposes an individual to breast cancer, to colon cancer, to Alzheimer's disease. From physical illnesses to behavioral traits, the mapping of our genes is moving with astonishing rapidity. Soon we will have extraordinary amounts of information about our most intimate selves. But--as this insightful, sometimes disturbing book makes clear--this new knowledge raises serious ethical, legal, and personal questions none of us can afford to ignore. On the heels of each new finding comes the capacity to test for the disorder the gene may activate, then the test itself--and then the questions. Just because the test is available, should we have it? The tests are often marketed by for-profit companies. Who is to determine what conditions warrant testing? Should it be up to the individual? A group of experts? A government agency? If a person learns he or she carries the gene for a particular disorder, what then? And, in the age of medical claim forms and computer networks, who else has access to that information? What if an employer finds out? If an insurance carrier denies future coverage? What about conceiving a child? Subjecting the fetus to prenatal genetic testing? If treatments for the condition lie well in the future, what benefit is it to know you or your child carry that gene? As the latest genetic breakthroughs make their way from the scientists' laboratories into individuals' lives, we will all face questions like these. In clear and accessible language, "Unnatural Selection takes us into the world of the researchers, physicians, ethicists, families, and people like ourselves as they contemplate the promise and consider the pitfalls of this exploding field of knowledge.




Evaluating Human Genetic Diversity


Book Description

This book assesses the scientific value and merit of research on human genetic differencesâ€"including a collection of DNA samples that represents the whole of human genetic diversityâ€"and the ethical, organizational, and policy issues surrounding such research. Evaluating Human Genetic Diversity discusses the potential uses of such collection, such as providing insight into human evolution and origins and serving as a springboard for important medical research. It also addresses issues of confidentiality and individual privacy for participants in genetic diversity research studies.




Assessing Genetic Risks


Book Description

Raising hopes for disease treatment and prevention, but also the specter of discrimination and "designer genes," genetic testing is potentially one of the most socially explosive developments of our time. This book presents a current assessment of this rapidly evolving field, offering principles for actions and research and recommendations on key issues in genetic testing and screening. Advantages of early genetic knowledge are balanced with issues associated with such knowledge: availability of treatment, privacy and discrimination, personal decision-making, public health objectives, cost, and more. Among the important issues covered: Quality control in genetic testing. Appropriate roles for public agencies, private health practitioners, and laboratories. Value-neutral education and counseling for persons considering testing. Use of test results in insurance, employment, and other settings.




Mapping and Sequencing the Human Genome


Book Description

There is growing enthusiasm in the scientific community about the prospect of mapping and sequencing the human genome, a monumental project that will have far-reaching consequences for medicine, biology, technology, and other fields. But how will such an effort be organized and funded? How will we develop the new technologies that are needed? What new legal, social, and ethical questions will be raised? Mapping and Sequencing the Human Genome is a blueprint for this proposed project. The authors offer a highly readable explanation of the technical aspects of genetic mapping and sequencing, and they recommend specific interim and long-range research goals, organizational strategies, and funding levels. They also outline some of the legal and social questions that might arise and urge their early consideration by policymakers.




Human Genome Editing


Book Description

Genome editing is a powerful new tool for making precise alterations to an organism's genetic material. Recent scientific advances have made genome editing more efficient, precise, and flexible than ever before. These advances have spurred an explosion of interest from around the globe in the possible ways in which genome editing can improve human health. The speed at which these technologies are being developed and applied has led many policymakers and stakeholders to express concern about whether appropriate systems are in place to govern these technologies and how and when the public should be engaged in these decisions. Human Genome Editing considers important questions about the human application of genome editing including: balancing potential benefits with unintended risks, governing the use of genome editing, incorporating societal values into clinical applications and policy decisions, and respecting the inevitable differences across nations and cultures that will shape how and whether to use these new technologies. This report proposes criteria for heritable germline editing, provides conclusions on the crucial need for public education and engagement, and presents 7 general principles for the governance of human genome editing.