Genetic Data and the Law


Book Description

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




Protecting Genetic Privacy in Biobanking Through Data Protection Law


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.




Privacy Issues in Biomedical and Clinical Research


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.




GDPR and Biobanking


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. .




A Law of Blood-ties - The 'Right' to Access Genetic Ancestry


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.




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.




Genetic Justice


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.




Consumer Genetic Technologies


Book Description

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




Protection of Human Genetic Information


Book Description

13. Law enforcement issues




DNA Technology in Forensic Science


Book Description

Matching DNA samples from crime scenes and suspects is rapidly becoming a key source of evidence for use in our justice system. DNA Technology in Forensic Science offers recommendations for resolving crucial questions that are emerging as DNA typing becomes more widespread. The volume addresses key issues: Quality and reliability in DNA typing, including the introduction of new technologies, problems of standardization, and approaches to certification. DNA typing in the courtroom, including issues of population genetics, levels of understanding among judges and juries, and admissibility. Societal issues, such as privacy of DNA data, storage of samples and data, and the rights of defendants to quality testing technology. Combining this original volume with the new update-The Evaluation of Forensic DNA Evidence-provides the complete, up-to-date picture of this highly important and visible topic. This volume offers important guidance to anyone working with this emerging law enforcement tool: policymakers, specialists in criminal law, forensic scientists, geneticists, researchers, faculty, and students.