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Results for “Genetic Privacy”

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At least 19 recordsLinked to original sources
PubMed2004

Disentangling privacy from property: toward a deeper understanding of genetic privacy.

With the mapping of the human genome, genetic privacy has become a concern to many. People care about genetic privacy because genes play an important role in shaping us--our genetic information is about us, and it is deeply connected to our sense of ourselves. In addition, unwanted disclosure of our genetic information, like a great deal of other personal information, makes us vulnerable to unwanted exposure, stigmatization, and discrimination. One recent approach to protecting genetic privacy is to create property rights in genetic information. This Article argues against that approach. Privacy and property are fundamentally different concepts. At heart, the term "property" connotes control within the marketplace and over something that is disaggregated or alienable from the self. "Privacy," in contrast, connotes control over access to the self as well as things close to, intimately connected to, and about the self. Given these different meanings, a regime of property rights in genetic information would impoverish our understanding of that information, ourselves, and the relationships we hope will be built around and through its disclosure. This Article explores our interests in genetic information in order to deepen our understanding of the ongoing discourse about the distinction between property and privacy. It develops a conception of genetic privacy with a strong relational component. We ordinarily share genetic information in the context of relationships in which disclosure is important to the relationship--family, intimate, doctor-patient, researcher-participant, employer-employee, and insurer-insured relationships. Such disclosure makes us vulnerable to and dependent on the person to whom we disclose it. As a result, trust is essential to the integrity of these relationships and our sharing of genetic information. Genetic privacy can protect our vulnerability in these relationships and enhance the trust we hope to have in them. Property, in contrast, by connoting commodification, disaggregation, and arms-length dealings, can negatively affect the self and harm these relationships. This Article concludes that a deeper understanding of genetic privacy calls for remedies for privacy violations that address dignitary harm and breach of trust, as opposed to market harms, as the property model suggests.

Commodification↗
PubMed1999

Underlying ambiguities in genetic privacy legislation.

Advances in genetic testing and research are creating increasing concern regarding genetic privacy. Current and proposed federal and state legislation has failed to provide adequate protection due to confusion over the meaning of privacy, inconsistency in the definition of genetic information, and lack of clarity with regard to the role of insurers in a market driven healthcare environment. Drawing on examples of current and proposed legislation, this paper explores these ambiguities with a view toward future health policy alternatives.

Europe↗
PubMed2001

Genetic privacy.

During the past 10 years, the number of genetic tests performed more than tripled, and public concern about genetic privacy emerged. The majority of states and the U.S. government have passed regulations protecting genetic information. However, research has shown that concerns about genetic privacy are disproportionate to known instances of information misuse. Beliefs in genetic determinacy explain some of the heightened concern about genetic privacy. Discussion of the debate over genetic testing within families illustrates the most recent response to genetic privacy concerns.

Confidentiality↗
PubMed2005

Democracy and genetic privacy: the value of bodily integrity.

The right to genetic privacy is presently being incorporated in legal systems all over the world. It remains largely unclear however what interests and values this right serves to protect. There are many different arguments made in the literature, yet none takes into account the problem of how particular values can be justified given the plurality of moral and religious doctrines in our societies. In this article theories of public reason are used in order to explore how genetic privacy could be justified in a way that is sensitive to the "fact of pluralism". The idea of public reason is specified as the idea that governments should appeal only to values and beliefs that are acceptable to all reasonable citizens in the justification of rights. In examining prevalent arguments for genetic privacy--based on the value of autonomy or on the value of intimacy--it is concluded that they do not meet this requirement. In dealing with this deficiency in the literature, an argument is developed that genetic privacy is fundamental to the democratic participation of all citizens. By referring to the preconditions of democratic citizenship, genetic privacy can be justified in a way that respects the plurality of comprehensive doctrines of morality and religion in contemporary societies.

Democracy↗
PubMedDate not supplied

[From genetic privacy to the right to genetic data protection. Basic protection of genetic data in Spanish law (regarding SSTC290/2000 and 292/2000, of November 30) (II)]].

In the second part the author examines the repercussions of constitutional case law on the legal protection of genetic information. He then considers the special nature of genetic information and addresses the corresponding need for special treatment thereof in law. A specific model is suggested for the legal status of such information. This model is based on the Spanish Constitution and the European Convention on Human Rights and Biomedicine. The article then casts a critical eye over data protection legislation in Spain (in particular Law 15/1999 of 13 December) concentrating on five principles, four of which are substantive and the fifth procedural: 1) consent; 2) purpose; 3) confidentiality; 4) quality; 5) proportionality. Lastly, the article gives examples of areas in which the model might be applied (for instance in employment contracts, insurance, access to information by family members).

Confidentiality↗
PubMed2001

Protecting genetic privacy.

This article outlines the arguments for and against new rules to protect genetic privacy. We explain why genetic information is different to other sensitive medical information, why researchers and biotechnology companies have opposed new rules to protect genetic privacy (and favour anti-discrimination laws instead), and discuss what can be done to protect privacy in relation to genetic-sequence information and to DNA samples themselves.

Employment↗
PubMed2001

Genetic privacy and academic medicine: the Oregon experience.

Legislators are considering the conflicting concerns of consumers, researchers, health care providers, and business in the rapidly developing area of genetics. The Oregon Genetic Privacy Act of 1995 was written to protect the individual's right to genetic privacy by providing legal protection for medical information, tissue samples, and DNA samples. This legislation has had an impact on the academic medical center of Oregon Health Sciences University (OHSU) with its teaching hospital and associated clinics, both in providing medical services and in research. This impact has occurred in several areas: (1) informed consent, (2) ownership of genetic information, and (3) security of medical information. It affects both patient care and research. OHSU and other academic medical centers have a mandate to provide leadership in the education of medical students, residents, and physicians about genetic privacy and the issues and areas affected by it. As genetic privacy legislation is developed and enacted at state and federal levels, the needs of individuals must be balanced with the needs of institutions and of research in the larger context of societal needs.

Academic Medical Centers↗
PubMedDate not supplied

[From genetic privacy to the right to genetic data protection. Basic protection of genetic data in Spanish law (regarding SSTC290/2000 and 292/2000, of November 30) (Part I)].

In Rulings 290/2000 and 292/2000, both handed down on 30 November 2000, Spain's Constitutional Court coined, so to speak, a new fundamental right: the right to protection of personal data, which marks the culmination of fundamental legal protection of privacy, private life and personal information. The first part of the article provides a historic and systematic analysis of legislative developments and constitutional case law in these areas, focusing on the right to privacy, so-called informatics freedom and the aforementioned right to protection of personal data.

Genetic Privacy↗
PubMed1998

Developing genetic privacy legislation: the South Carolina experience.

The availability of presymptomatic and predisposition genetic testing has spawned the need for legislation prohibiting health insurance discrimination on the basis of genetic information. The federal effort, the Health Insurance Portability and Accountability Act (HIPAA) of 1996, falls short by protecting only those who access insurance through group plans. A committee of University of South Carolina professionals convened in 1996 to develop legislation in support of genetic privacy for the state of South Carolina. The legislation prevents health insurance companies from denying coverage or setting insurance rates on the basis of genetic information. It also protects the privacy of genetic information and prohibits performance of genetic tests without specific informed consent. In preparing the bill, genetic privacy laws from other states were reviewed, and a modified version of the Virginia law adopted. The South Carolina Committee for the Protection of Genetic Privacy version went a step further by including enforcement language and excluding Virginia's sunset clause. The definition of genetic information encompassed genetic test results, and importantly, includes family history of genetic disease. Our experience in navigating through the state legislature and working through opposition from the health insurance lobby is detailed herein.

Confidentiality↗
PubMed1999

Genetic privacy: orthodoxy or oxymoron?

In this paper we question whether the concept of "genetic privacy" is a contradiction in terms. And, if so, whether the implications of such a conclusion, inevitably impact on how society comes to perceive privacy and responsibility generally. Current law and ethical discourse place a high value on self-determination and the rights of individuals. In the medical sphere, the recognition of patient "rights" has resulted in health professionals being given clear duties of candour and frankness. Dilemmas arise, however, when patients decline to know relevant information or, knowing it, refuse to share it with others who may also need to know. This paper considers the notions of interconnectedness and responsibility to others which are brought to the fore in the genetic sphere and which challenge the primacy afforded to personal autonomy. It also explores the extent to which an individual's perceived moral obligations can or should be enforced.

Beneficence↗
PubMed1999

Genetic privacy and the law: an end to genetics exceptionalism.

While the proliferation of human genetic information promises to achieve many public benefits, the acquisition, use, retention, and disclosure of genetic data threatens individual liberties. States (and to a lesser degree, the federal government) have responded to the anticipated and actual threats of privacy invasion and discrimination by enacting several types of genetic-specific legislation. These laws emphasize the differences between genetic information and other health information. By articulating these differences, governments afford genetic data an "exceptional" status. The authors argue that genetic exceptionalism is flawed for two reasons: (1) strict protections of autonomy, privacy, and equal treatment of persons with genetic conditions threaten the accomplishment of public goods; and (2) there is no clear demarcation separating genetic data from other health data; other health data deserve protections in a national health information infrastructure. The authors present ideas for individual privacy protections that balance the societal need for genetic information and the claims for privacy by individuals and families.

Databases, Nucleic Acid↗
PubMed1998

Genetic privacy and confidentiality: why they are so hard to protect.

Author notes that widespread concerns have been raised about protecting genetic privacy and confidentiality in insurance and employment. He argues that effective protections are difficult because complicated issues, such as the right of access to health care, are invariably implicated.

Civil Rights↗