The Experts below are selected from a list of 4323 Experts worldwide ranked by ideXlab platform
Margaret Everett - One of the best experts on this subject based on the ideXlab platform.
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The “I” in the Gene: Divided Property, Fragmented Personhood, and the Making of a Genetic Privacy Law
American Ethnologist, 2007Co-Authors: Margaret EverettAbstract:In this article, I explore the making and remaking of Oregon's Genetic Privacy Act, one of the first Genetic Privacy laws passed in the United States. New Genetic technologies have provoked debates about medical Privacy and property rights to the body and products derived from the body, and a majority of states have passed legislation regarding the use and disclosure of Genetic information. Research in medical anthropology has increasingly focused on the politicized and fragmented body in modern science. As Genetic Privacy debates demonstrate, however, not only is the body increasingly subject to fragmentation but the property and Privacy interests in bodies, body parts, and products derived from bodies are also increasingly subject to division. This article is based on my role as a member of two statewide advisory commissions from 1999 to 2005, the recordings and minutes of their meetings, legislation, testimony from legislative hearings, media coverage of the debate in Oregon, and letters to the editors of local newspapers.
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Can You Keep a (Genetic) Secret? The Genetic Privacy Movement
Journal of Genetic Counseling, 2004Co-Authors: Margaret EverettAbstract:This paper reviews the literature on Genetic Privacy, especially since 1995 and the first proposal for national Genetic Privacy legislation. Since that time, a majority of states have passed some form of Genetic Privacy legislation, and efforts to pass federal legislation are ongoing. Such new laws, however, remain untested in the courts and their effects are unclear. If they fail to provide additional protections against discrimination for most people, their most significant impact may be in their ability to either diminish or enhance the power of Genetic information and to influence the way individuals view themselves and others. How does “Genetic exceptionalism”—the idea that Genetic information is different from other types of medical information—relate to “Genetic essentialism”—the idea that we are to a large extent shaped by our genes? Anthropological views on Genetics and personhood bring a new perspective to this ongoing debate. Implications for counseling practices are also explored.
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The Social Life of Genes: Privacy, Property and the New Genetics
Social Science & Medicine, 2003Co-Authors: Margaret EverettAbstract:With the advent of the Human Genome Project and widespread fears over human cloning and medical Privacy, a number of states have moved to protect Genetic Privacy. Oregon's unique Genetic Privacy Act of 1995, which declared that an individual had property rights to their DNA, has provoked national and international interest and controversy. This paper critically reviews the literature on Genetic Privacy and gene patenting from law, philosophy, science and anthropology. The debate in Oregon, from 1995 to 2001, illustrates many of the key issues in this emerging area. Both sides of the debate invoke the property metaphor, reinforcing deterministic assumptions and avoiding more fundamental questions about the integrity of the body and self-identity. The anthropological critique of the commodification of the body, and the concept of 'embodiment' are useful in analyzing the debate over DNA as property.
Michael D Edge - One of the best experts on this subject based on the ideXlab platform.
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attacks on Genetic Privacy via uploads to genealogical databases
eLife, 2020Co-Authors: Michael D Edge, Graham CoopAbstract:: Direct-to-consumer (DTC) Genetics services are increasingly popular, with tens of millions of customers. Several DTC genealogy services allow users to upload Genetic data to search for relatives, identified as people with genomes that share identical by state (IBS) regions. Here, we describe methods by which an adversary can learn database genotypes by uploading multiple datasets. For example, an adversary who uploads approximately 900 genomes could recover at least one allele at SNP sites across up to 82% of the genome of a median person of European ancestries. In databases that detect IBS segments using unphased genotypes, approximately 100 falsified uploads can reveal enough Genetic information to allow genome-wide Genetic imputation. We provide a proof-of-concept demonstration in the GEDmatch database, and we suggest countermeasures that will prevent the exploits we describe.
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attacks on Genetic Privacy via uploads to genealogical databases
bioRxiv, 2019Co-Authors: Michael D Edge, Graham CoopAbstract:Direct-to-consumer (DTC) Genetics services are increasingly popular for Genetic genealogy, with tens of millions of customers as of 2019. Several DTC genealogy services allow users to upload their own Genetic datasets in order to search for Genetic relatives. A user and a target person in the database are identified as Genetic relatives if the user9s uploaded genome shares one or more sufficiently long segments in common with that of the target person---that is, if the two genomes share one or more long regions identical by state (IBS). IBS matches reveal some information about the genotypes of the target person, particularly if the chromosomal locations of IBS matches are shared with the uploader. Here, we describe several methods by which an adversary who wants to learn the genotypes of people in the database can do so by uploading multiple datasets. Depending on the methods used for IBS matching and the information about IBS segments returned to the user, substantial information about users9 genotypes can be revealed with a few hundred uploaded datasets. For example, using a method we call IBS tiling, we estimate that an adversary who uploads approximately 900 publicly available genomes could recover at least one allele at SNP sites across up to 82\% of the genome of a median person of European ancestries. In databases that detect IBS segments using unphased genotypes, approximately 100 uploads of falsified datasets can reveal enough Genetic information to allow accurate genome-wide imputation of every person in the database. Different DTC services use different methods for identifying and reporting IBS segments, leading to differences in vulnerability to the attacks we describe. We provide a proof-of-concept demonstration that the GEDmatch database in particular uses unphased genotypes to detect IBS and is vulnerable to genotypes being revealed by artificial datasets. We suggest simple-to-implement suggestions that will prevent the exploits we describe and discuss our results in light of recent trends in Genetic Privacy, including the recent use of uploads to DTC Genetic genealogy services by law enforcement.
Graeme Laurie - One of the best experts on this subject based on the ideXlab platform.
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Comprar Genetic Privacy | Graeme Laurie | 9780521047128 | Cambridge University Press
2008Co-Authors: Graeme LaurieAbstract:Tienda online donde Comprar Genetic Privacy al precio 41,56 € de Graeme Laurie, tienda de Libros de Medicina, Libros de Biologia - Genetica
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Genetic Privacy: A Challenge to Medico-Legal Norms
2002Co-Authors: Graeme LaurieAbstract:Preface Table of cases Table of legislation International instruments Miscellaneous documents Part I. Privacy: The General Part: 1. Health care, patient rights and Privacy 2. Privacy: anti-social concept or fundamental right? Part II. Genetic Knowledge: The Existing Models: 3. Human Genetics and Genetic Privacy 4. Autonomy, confidentiality and Privacy Part III. A New Privacy Paradigm: 5. Privacy and the public interest 6. Privacy and property? Index.
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Genetic Privacy: Health care, patient rights and Privacy
Genetic Privacy, 2002Co-Authors: Graeme LaurieAbstract:Privacy as a problem Privacy is a problem. Or rather, Privacy causes problems. It causes problems for sociologists, psychologists, anthropologists, philosophers, politicians, doctors, lawyers, governments, states, communities, groups and individuals. The problems that it causes relate to its definition, its function, its nature, its utility, its value and its protection. The sheer extent of the difficulties is revealed by the length of the first few notes to this text. One might wonder, as a result, what another text on Privacy could meaningfully contribute to the debate. A first step to answering this question is to realise that the scope of Privacy is so wide-ranging that no reasonable attempt can be made to analyse the concept in all of its facets and guises. This book examines the role of Privacy in a health care setting. It considers patient Privacy and the interface between medicine and law in the protection of individual rights as regards the provision of health care. In particular, the contribution of this work to the general debate about Privacy lies in an examination of the Privacy issues raised by what has been termed the New Genetics. The advent of modern Genetic science and Genetic testing has given rise to acute problems in the health care context, some real and others imaginary. For example, the discovery of a predisposition to a Genetic condition in one individual often also reveals potential risks to the blood relatives of that individual.
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Genetic Privacy: Privacy and the public interest
Genetic Privacy, 2002Co-Authors: Graeme LaurieAbstract:Contemporary Privacy protection Not until the closing days of the twentieth century did the English courts eventually recognise a common law right of Privacy. Prior to this the judiciary had expressly denied such a right, suggesting that it was for Parliament alone to provide for Privacy protection. In ironic and stark contrast, the common law of Privacy in the United States enjoyed a rich and productive twentieth century, its creation in turn having been instigated at the end of the previous century by the seminal work of Warren and Brandeis in which the authors relied on English common law actions in copyright, defamation and breach of confidence to argue for the existence of a US right to Privacy. We have considered these latter developments in chapter 2. The more recent English volte face represents the culmination of a number of events that demonstrate how conceptually confused thinking continues to beleaguer this field of scholarship, making for ill-conceived and patchy Privacy protection. These factors are (i) a failure to distinguish between the concepts of confidentiality and Privacy, to the detriment of the legal protection of each; (ii) a lack of theoretical and definitional clarity as to the meaning of Privacy more generally; and (iii) the advent of statutory developments that embody equally unclear conceptions of Privacy, yet which at the same time have ushered in a new era of sensitivity to individual rights, making it politically more expedient to create a new common law right.
Graham Coop - One of the best experts on this subject based on the ideXlab platform.
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attacks on Genetic Privacy via uploads to genealogical databases
eLife, 2020Co-Authors: Michael D Edge, Graham CoopAbstract:: Direct-to-consumer (DTC) Genetics services are increasingly popular, with tens of millions of customers. Several DTC genealogy services allow users to upload Genetic data to search for relatives, identified as people with genomes that share identical by state (IBS) regions. Here, we describe methods by which an adversary can learn database genotypes by uploading multiple datasets. For example, an adversary who uploads approximately 900 genomes could recover at least one allele at SNP sites across up to 82% of the genome of a median person of European ancestries. In databases that detect IBS segments using unphased genotypes, approximately 100 falsified uploads can reveal enough Genetic information to allow genome-wide Genetic imputation. We provide a proof-of-concept demonstration in the GEDmatch database, and we suggest countermeasures that will prevent the exploits we describe.
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attacks on Genetic Privacy via uploads to genealogical databases
bioRxiv, 2019Co-Authors: Michael D Edge, Graham CoopAbstract:Direct-to-consumer (DTC) Genetics services are increasingly popular for Genetic genealogy, with tens of millions of customers as of 2019. Several DTC genealogy services allow users to upload their own Genetic datasets in order to search for Genetic relatives. A user and a target person in the database are identified as Genetic relatives if the user9s uploaded genome shares one or more sufficiently long segments in common with that of the target person---that is, if the two genomes share one or more long regions identical by state (IBS). IBS matches reveal some information about the genotypes of the target person, particularly if the chromosomal locations of IBS matches are shared with the uploader. Here, we describe several methods by which an adversary who wants to learn the genotypes of people in the database can do so by uploading multiple datasets. Depending on the methods used for IBS matching and the information about IBS segments returned to the user, substantial information about users9 genotypes can be revealed with a few hundred uploaded datasets. For example, using a method we call IBS tiling, we estimate that an adversary who uploads approximately 900 publicly available genomes could recover at least one allele at SNP sites across up to 82\% of the genome of a median person of European ancestries. In databases that detect IBS segments using unphased genotypes, approximately 100 uploads of falsified datasets can reveal enough Genetic information to allow accurate genome-wide imputation of every person in the database. Different DTC services use different methods for identifying and reporting IBS segments, leading to differences in vulnerability to the attacks we describe. We provide a proof-of-concept demonstration that the GEDmatch database in particular uses unphased genotypes to detect IBS and is vulnerable to genotypes being revealed by artificial datasets. We suggest simple-to-implement suggestions that will prevent the exploits we describe and discuss our results in light of recent trends in Genetic Privacy, including the recent use of uploads to DTC Genetic genealogy services by law enforcement.
John Devereux - One of the best experts on this subject based on the ideXlab platform.
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Genetic Privacy: A challenge to medico-legal norms
University of Queensland Law Journal, 2004Co-Authors: John DevereuxAbstract:Graeme Laurie, Genetic Privacy: A Challenge to Medico-Legal Norms, Cambridge University Press (2002).