Genetic Data and the Law PDF Download

Author: Mark Taylor
Publisher: Cambridge University Press
ISBN: 1107007119
Category : Computers
Languages : en
Pages : 247

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Book Description
Mark Taylor demonstrates how research using genetic data can be reconciled with proper privacy protection.

Author: National Research Council
Publisher: National Academies Press
ISBN: 0309063280
Category : Medical
Languages : en
Pages : 59

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Book Description
After discussions with the National Cancer Institute and the Department of Energy the Board on Biology of the National Research Council agreed to run a workshop under the auspices of its Forum on Biotechnology entitled "Privacy Issues in Biomedical and Clinical Research" on November 1, 1997. The organizers want to stress the forum was not intended to cover the full gauntlet of issues concerning Genomics and the Privacy of Medical Records. The emphasis of this forum was to look at pending legislation in Congress (Fall, 1997) and consider, if enacted as written, how this would affect genetic research. The broad language of this legislation written to protect the individual could inadvertently restrict research intended to help these same individuals. Scientific progress requires the sharing of information for the validation of results and the dissemination of gained knowledge to be effective. Other issues which were touched upon in this forum but not fully explored include; the trust of individuals involved in genetic studies in the manner their genetic information could be used, the practice of the generalized "linking" of particular ethnic groups with specific genetic traits, and the potential for positive and negative impact on the quality of life by having knowledge of one's genetic potential. These and other issues which have come upon us in the age of genomics require separate, focused efforts to explore their potential effect on society.

Author: Dara Hallinan
Publisher:
ISBN: 0192896474
Category :
Languages : en
Pages : 305

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Book Description
Hallinan argues that the substantive framework presented by the GDPR offers an admirable base-line level of protection for the range of genetic privacy rights engaged by biobanking.

Author: Mark Taylor
Publisher: Cambridge University Press
ISBN: 1107378184
Category : Law
Languages : en
Pages : 247

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Book Description
Research using genetic data raises various concerns relating to privacy protection. Many of these concerns can also apply to research that uses other personal data, but not with the same implications for failure. The norms of exclusivity associated with a private life go beyond the current legal concept of personal data to include genetic data that relates to multiple identifiable individuals simultaneously and anonymous data that could be associated with any number of individuals in different, but reasonably foreseeable, contexts. It is the possibilities and implications of association that are significant, and these possibilities can only be assessed if one considers the interpretive potential of data. They are missed if one fixates upon its interpretive pedigree or misunderstands the meaning and significance of identification. This book demonstrates how the public interest in research using genetic data might be reconciled with the public interest in proper privacy protection.

Author: Mark Taylor
Publisher:
ISBN: 9781139336703
Category : LAW
Languages : en
Pages : 248

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Book Description
Research using genetic data raises various concerns relating to privacy protection. Many of these concerns can also apply to research that uses other personal data, but not with the same implications for failure. The norms of exclusivity associated with a private life go beyond the current legal concept of personal data to include genetic data that relates to multiple identifiable individuals simultaneously and anonymous data that could be associated with any number of individuals in different, but reasonably foreseeable, contexts. It is the possibilities and implications of association that are significant, and these possibilities can only be assessed if one considers the interpretive potential of data. They are missed if one fixates upon its interpretive pedigree or misunderstands the meaning and significance of identification. This book demonstrates how the public interest in research using genetic data might be reconciled with the public interest in proper privacy protection.

Author: I. Glenn Cohen
Publisher: Cambridge University Press
ISBN: 1108836615
Category : Law
Languages : en
Pages : 303

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Book Description
Examines the ethical, legal, and regulatory challenges presented as genomics become commonplace, easily available consumer products.

Author: Institute of Medicine
Publisher: National Academies Press
ISBN: 0309047986
Category : Medical
Languages : en
Pages : 353

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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.

Author: Sheldon Krimsky
Publisher: Columbia University Press
ISBN: 0231145209
Category : Computers
Languages : en
Pages : 426

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Book Description
Two leading authors on medical ethics, science policy, and civil liberties take a hard look at how the United States has balanced the use of DNA technology, particularly the use of DNA databanks in criminal justice, with the privacy rights of its citizenry. The authors explore many controversial topics, including the legal precedent for taking DNA from juveniles, the search for possible family members of suspects in DNA databases, the launch of "DNA dragnets" among local populations, and the warrantless acquisition by police of so-called abandoned DNA in the search for suspects. Most intriguing, they explode the myth that DNA profiling is infallible, which has profound implications for criminal justice.

Author: Alice Diver
Publisher: Springer Science & Business Media
ISBN: 3319010719
Category : Law
Languages : en
Pages : 316

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Book Description
This text collates and examines the jurisprudence that currently exists in respect of blood-tied genetic connection, arguing that the right to identity often rests upon the ability to identify biological ancestors, which in turn requires an absence of adult-centric veto norms. It looks firstly to the nature and purpose of the blood-tie as a unique item of birthright heritage, whose socio-cultural value perhaps lies mainly in preventing, or perhaps engendering, a feared or revered sense of ‘otherness.’ It then traces the evolution of the various policies on ‘telling’ and accessing truth, tying these to the diverse body of psychological theories on the need for unbroken attachments and the harms of being origin deprived. The ‘law’ of the blood-tie comprises of several overlapping and sometimes conflicting strands: the international law provisions and UNCRC Country Reports on the child’s right to identity, recent Strasbourg case law, and domestic case law from a number of jurisdictions on issues such as legal parentage, vetoes on post-adoption contact, court-delegated decision-making, overturned placements and the best interests of the relinquished child. The text also suggests a means of preventing the discriminatory effects of denied ancestry, calling upon domestic jurists, legislators, policy-makers and parents to be mindful of the long-term effects of genetic ‘kinlessness’ upon origin deprived persons, especially where they have been tasked with protecting this vulnerable section of the population.

Author: Jane Reichel
Publisher: Springer Nature
ISBN: 3030493881
Category : Biobanks
Languages : en
Pages : 432

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Book Description
Part I Setting the scene -- Introduction: Individual rights, the public interest and biobank research 4000 (8) -- Genetic data and privacy protection -- Part II GDPR and European responses -- Biobank governance and the impact of the GDPR on the regulation of biobank research -- Controller' and processor's responsibilities in biobank research under GDPR -- Individual rights in biobank research under GDPR -- Safeguards and derogations relating to processing for archiving purposes in the scientific purposes: Article 89 analysis for biobank research -- A Pan-European analysis of Article 89 implementation and national biobank research regulations -- EEA, Switzerland analysis of GDPR requirements and national biobank research regulations -- Part III National insights in biobank regulatory frameworks -- Selected 10-15 countries for reports: Germany -- Greece -- France -- Finland -- Sweden -- United Kingdom -- Part IV Conclusions -- Reflections on individual rights, the public interest and biobank research, ramifications and ways forward. .