Efforts to Regulate the Collection and Use of Genetic Information

Abstract Public fascination with and support for genetic medicine is complicated by a deeply held fear that genetic information will be used by third parties (eg, insurers, employers, school systems) in ways that will harm the individuals from whom it was derived. Since the mid-1990s there has been much state and some federal legislative activity to address 2 closely related issues: the maintenance of genetic privacy and the prevention of genetic discrimination. These laws have had to confront several challenging questions such as what constitutes a genetic test, is genetic information qualitatively different from other medical information, and is there a means to distinguish between the two. In general the state laws are not well crafted. I will argue that a far more preferable policy is to draft a global, comprehensive medical records privacy law and to develop a model statute that defines the role of predictive genetic information in insurance underwriting. Concerns over misuse of genetic information also pose major issues for the conduct of genomic research. Among those I discuss are ownership of the DNA sample, significant changes in the scope of consent that must precede the decision to volunteer as a subject in genomic research, the reuse of long-archived samples, the challenges to intellectual property rights that flow from research, and the rise of the doctrine of community consent.

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Genetic Exceptionalism and Legislative Pragmatism

The Journal of Law Medicine & Ethics ◽

10.1111/j.1748-720x.2007.00154.x ◽

2007 ◽

Vol 35 (S2) ◽

pp. 59-65 ◽

Cited By ~ 19

Author(s):

Mark A. Rothstein

Keyword(s):

Health Insurance ◽

Genetic Information ◽

Medical Information ◽

Genetic Discrimination ◽

Genome Project ◽

Genetic Privacy ◽

State Laws ◽

Genetic Exceptionalism ◽

Discrimination In Employment ◽

The Human Genome Project

One of the most important and contentious policy issues surrounding genetics is whether genetic information should be treated separately from other medical information. The view that genetics raises distinct issues is what Thomas Murray labeled “genetic exceptionalism,” borrowing from the earlier term “HIV exceptional-ism.” The issue of whether the use of genetic information should be addressed separately from other health information is not merely an academic concern, however. Since the Human Genome Project began in 1990, nearly every state has enacted legislation prohibiting genetic discrimination in health insurance; two-thirds of the states have enacted laws prohibiting genetic discrimination in employment, and other state laws have been enacted dealing with genetic discrimination in life insurance, genetic privacy, and genetic testing. Bills in Congress also would prohibit genetic discrimination in health insurance and employment.

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Drafting the Genetic Privacy Act: Science, Policy, and Practical Considerations

The Journal of Law Medicine & Ethics ◽

10.1111/j.1748-720x.1995.tb01378.x ◽

1995 ◽

Vol 23 (4) ◽

pp. 360-366 ◽

Cited By ~ 76

Author(s):

George J. Annas ◽

Leonard H. Glantz ◽

Patricia A. Roche

Keyword(s):

Genetic Testing ◽

Genetic Screening ◽

Genetic Information ◽

Medical Information ◽

Legal Protection ◽

Central Question ◽

Genetic Privacy ◽

The Public ◽

Privacy Act ◽

Cholesterol Levels

Only 27 percent of Americans in a 1995 Harris poll said they had read or heard “quite a lot” about genetic tests. Nonetheless, 68 percent said they would be either “very likely” or “somewhat likely” to undergo genetic testing even for diseases “for which there is presently no cure or treatment.” Perhaps most astonishing, 56 percent found it either “very” or “somewhat acceptable” to develop a government computerized DNA bank with samples taken from all newborns, and their names attached to the samples. This does not necessarily mean the public is unconcerned about genetic privacy. More likely it means that the public is still uninformed about the risks associated with genetic testing, and has not thought at all about the risks involved in storing identifiable DNA samples.A central question presented by genetic screening and testing is whether the genetic information so obtained is different in kind from other medical information (such as family history and cholesterol levels), and, if so, whether this means that it should receive special legal protection.

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The Genetic Privacy Act: An Analysis of Privacy and Research Concerns

The Journal of Law Medicine & Ethics ◽

10.1111/j.1748-720x.1997.tb01408.x ◽

1997 ◽

Vol 25 (4) ◽

pp. 256-272 ◽

Cited By ~ 10

Author(s):

Edwin S. Flores Troy

Keyword(s):

Human Genome ◽

Health Care Professionals ◽

Human Genome Project ◽

Genetic Information ◽

Medical Information ◽

Genetic Material ◽

Genome Project ◽

Genetic Privacy ◽

Privacy Act ◽

The Human Genome Project

In the last few years, a great deal of attention has been paid to the effects that the achievements of the Human Genome Project will have on the confidentiality of medical information. The Genetic Privacy Act (GPA) is an attempt to address the privacy, confidentiality, and property rights relating to obtaining, requesting, using, storing, and disposing of genetic material. The GPA grew out of concerns over the vast amount of genetic information that is a product of the Human Genome Project. The central goals of the GPA are twofold: (1) to define an individual's right to control access to their genetic material and the privilege to control the information derived therefrom; and (2) to prevent potential and actual abuse of genetic information by third parties, such as insurance companies, employers, and government. The GPA is one of a group of proposals that seek to control the flow of medical information from the individual to health care professionals and to other persons.

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Legal Regulation of Biobanks Activity in Russia

CIVIL LAW ◽

10.18572/2070-2140-2020-6-39-42 ◽

2020 ◽

Vol 6 ◽

pp. 39-42

Author(s):

Elena S. Kryukova ◽

◽

Valentina D. Ruzanova ◽

Keyword(s):

Genetic Information ◽

Genetic Data ◽

Legal Regulation ◽

Genomic Research ◽

State Control ◽

Legal Regime ◽

General Rules ◽

The Status ◽

Rules Of Procedure

The article analyzes the concept and role of biobanks in carrying out genomic research and concludes that it is necessary, on the basis of an agreed conceptual apparatus, to formulate general provisions on the status of subjects with biobanks, on the regime of bio samples and information obtained on their basis. It is proposed to ensure interaction of organizations engaged in biobanking by improving the legal regime of biobanks, forming registers of genetic data and strengthening state control over their activities. The idea is substantiated that the legal regulation of biobanking in Russia should be based on the principles laid down in international acts, ethical rules and doctrine. In the article, considerations were made regarding the need to separate within the framework of the general rules of procedure for the provision of biomaterials and genetic information for scientific purposes, special attention was paid to the procedure for transboundary exchange of information.

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Does a Ribosome Really Read? On the Cognitive Roots and Heuristic Value of Linguistic Metaphors in Molecular Genetics. Part 2

Russian Journal of Philosophical Sciences ◽

10.30727/0235-1188-2020-63-2-46-62 ◽

2020 ◽

Vol 63 (2) ◽

pp. 46-62

Author(s):

Suren T. Zolyan

Keyword(s):

Information Processing ◽

Genetic Information ◽

Formal Organization ◽

Dual Nature ◽

Reading Frame ◽

The Core ◽

Genetic Information Processing ◽

Cognitive Frame ◽

Effective Instrument

We discuss the role of linguistic metaphors as a cognitive frame for the understanding of genetic information processing. The essential similarity between language and genetic information processing has been recognized since the very beginning, and many prominent scholars have noted the possibility of considering genes and genomes as texts or languages. Most of the core terms in molecular biology are based on linguistic metaphors. The processing of genetic information is understood as some operations on text – writing, reading and editing and their specification (encoding/decoding, proofreading, transcription, translation, reading frame). The concept of gene reading can be traced from the archaic idea of the equation of Life and Nature with the Book. Thus, the genetics itself can be metaphorically represented as some operations on text (deciphering, understanding, code-breaking, transcribing, editing, etc.), which are performed by scientists. At the same time linguistic metaphors portrayed gene entities also as having the ability of reading. In the case of such “bio-reading” some essential features similar to the processes of human reading can be revealed: this is an ability to identify the biochemical sequences based on their function in an abstract system and distinguish between type and its contextual tokens of the same type. Metaphors seem to be an effective instrument for representation, as they make possible a two-dimensional description: biochemical by its experimental empirical results and textual based on the cognitive models of comprehension. In addition to their heuristic value, linguistic metaphors are based on the essential characteristics of genetic information derived from its dual nature: biochemical by its substance, textual (or quasi-textual) by its formal organization. It can be concluded that linguistic metaphors denoting biochemical objects and processes seem to be a method of description and explanation of these heterogeneous properties.

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Genetic essentialism: The mediating role of essentialist biases on the relationship between genetic knowledge and the interpretations of genetic information

European Journal of Medical Genetics ◽

10.1016/j.ejmg.2020.104119 ◽

2021 ◽

Vol 64 (1) ◽

pp. 104119

Author(s):

Ilan Dar-Nimrod ◽

Ruth Kuntzman ◽

Georgia MacNevin ◽

Kate Lynch ◽

Marlon Woods ◽

...

Keyword(s):

Genetic Information ◽

Genetic Knowledge ◽

Mediating Role ◽

Genetic Essentialism ◽

The Relationship

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112 How Will the Purebred Association Adapt to a Changing Beef Industry?

Journal of Animal Science ◽

10.1093/jas/skab054.068 ◽

2021 ◽

Vol 99 (Supplement_1) ◽

pp. 39-39

Author(s):

Mark McCully

Keyword(s):

Supply Chains ◽

Genetic Information ◽

Gene Editing ◽

Value Added ◽

Beef Industry ◽

Breed Improvement ◽

Pull Through ◽

Optimum Production ◽

Selection Tools

Abstract The role of the breed association has historically been to keep a registry of a pure breed, aggregate the performance data surrounding that one breed, develop breeding and selection tools, and conduct breed promotion. Larger associations have been able to augment that with operating magazines and other media, running branded beef programs, feeder calf marketing programs, and genetic evaluation for other breeds. The relevance of breed associations is being and will continue to be challenged as genomics and large commercial databases develop and allow for breeding and selection tools to be developed independently by large breeders or private entities. Gene editing and other such technology will also challenge the traditional seedstock models and opens the door for proprietary genetic lines. Breed associations may need to modify their traditional policies to incorporate these innovations. Supply chains will continue to become far more sophisticated and will incorporate more genetic information to guide management decisions and potentially validate brand promises around sustainability. To stay relevant, breed associations of the future will need to do the following: Balance the needs of diverse membership (show, hobby, lifestyle, etc.) with commercial industry value and significance. Have access to large amounts of data and be leaders in adopting the most current technologies. Deliver tools for breeders that enhance the profitability of commercial producers – identify optimum production levels vs maximum outputs. Work collaboratively with multiple supply chains providing the needed genetic information. Be a significant educational resource to breeders and commercial producers. Be a leader in research on breed improvement and genetic advancement. Have value-added programs that create real and sustained pull-through demand for the end product.

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Armed, Prohibited and Violent at Home: Implementation and Enforcement of Restrictions on Gun Possession by Domestic Violence Offenders in Four U.S. Localities

Journal of Family Violence ◽

10.1007/s10896-020-00241-6 ◽

2021 ◽

Author(s):

Shannon Frattaroli ◽

April M. Zeoli ◽

Daniel W. Webster

Keyword(s):

Domestic Violence ◽

Violence Prevention ◽

Intimate Partner Homicide ◽

State Laws ◽

Protective Orders ◽

Implementation Models ◽

Domestic Violence Prevention ◽

Depth Interviews ◽

Insight Into

AbstractFirearms increase the risk of lethality in violent intimate relationships. Policies that restrict access to firearms by respondents to civil domestic violence protective orders (DVROs) are associated with reductions in intimate partner homicide, yet there is scant literature about how such prohibitions are implemented. We document how four localities are implementing gun possession prohibitions that result from civil and criminal restraining orders and domestic violence misdemeanor convictions; and assess the findings in the context of Kingdon’s agenda setting framework. We identified four jurisdictions where gun dispossession of prohibited domestic violence offenders was underway and collected data through in-depth interviews, site visits, and documents. We coded the data, identified explanatory themes, and compared the findings to Kingdon’s framework. The four jurisdictions have policies ranging from no state laws restricting domestic violence offenders’ access to guns to comprehensive state laws. We describe implementation initiatives to dispossess prohibited people of their guns in the four jurisdictions, two distinct implementation models through which gun dispossession occurs, and an expanded application of Kingdon’s model. In each jurisdiction, we identified one or more individuals who championed implementation. Policies that prohibit domestic violence offenders from possessing guns are promising, and possible in diverse settings and jurisdictions. Here we provide insight into implementation efforts in four jurisdictions, emphasize the role of individuals in prioritizing implementation, and highlight the potential to realize these restrictions across states with different laws. Focusing on implementation is a much-needed paradigm shift that complements the traditional focus on passing domestic violence prevention laws.

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