Genetic Information, Legal, Genetic Privacy Laws

2002 ◽  
Author(s):  
Mary R. Anderlik ◽  
Rebecca D. Pentz
Keyword(s):  
Genetic Information ◽  
Genetic Privacy ◽  
Privacy Laws

Genetic Privacy Laws and Patients' Fear of Discrimination by Health Insurers: The View from Genetic Counselors

2000 ◽  
Vol 28 (3) ◽  
pp. 245-257 ◽  
Author(s):  
Mark A. Hall ◽  
Stephen S. Rich
Keyword(s):  
Health Insurance ◽  
Genetic Information ◽  
Federal Law ◽  
Genetic Privacy ◽  
Genetic Tests ◽  
Group Health ◽  
Privacy Laws ◽  
Similar Legislation ◽  
Do So ◽  
Health Insurers

Since 1991, over half the states have enacted laws that restrict or prohibit insurers’ use of genetic information in pricing, issuing, or structuring health insurance. Wisconsin was the first state to do so, in 1991, followed by Ohio in 1993, California and Colorado in 1994, and then several more states a year in each of the next five years. Similar legislation has been pending in Congress for several years. Also, a 1996 federal law known as the Health Insurance Portability and Accountability Act (HIPAA) prohibits group health insurers from applying “preexisting condition” exclusions to genetic conditions that are indicated solely by genetic tests and not by any actual symptoms.

Laboratory Specimens and Genetic Privacy: Evolution of Legal Theory

2013 ◽  
Vol 41 (S1) ◽  
pp. 65-68 ◽  
Author(s):  
Michelle Huckaby Lewis
Keyword(s):  
Biomedical Research ◽  
Biological Samples ◽  
Biological Tissue ◽  
Genetic Information ◽  
Legal Theory ◽  
Genetic Privacy ◽  
Tissue Samples

Human biological tissue samples are an invaluable resource for biomedical research designed to find causes of diseases and their treatments. Controversy has arisen, however, when research has been conducted with laboratory specimens either without the consent of the source of the specimen or when the research conducted with the specimen has expanded beyond the scope of the original consent agreement. Moreover, disputes have arisen regarding which party, the researcher or the source of the specimen, has control over who may use the specimens and for what purposes. The purposes of this article are: (1) to summarize the most important litigation regarding the use of laboratory specimens, and (2) to demonstrate how legal theory regarding control of laboratory specimens has evolved from arguments based upon property interests in biological samples to claims that the origins of laboratory specimens have privacy interests in their genetic information that should be protected.

scholarly journals Attacks on genetic privacy via uploads to genealogical databases

eLife ◽  
2020 ◽  
Vol 9 ◽  
Author(s):  
Michael D Edge ◽  
Graham Coop
Keyword(s):  
Genetic Information ◽  
Genetic Data ◽  
Proof Of Concept ◽  
Genetic Privacy ◽  
Direct To Consumer ◽  
Multiple Datasets ◽  
Genome Wide ◽  
Genetics Services

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.

Genetics and the Law

2021 ◽  
Author(s):  
Maxwell Mehlman ◽  
Sonia Suter
Keyword(s):  
Genetic Testing ◽  
Genetic Information ◽  
Ethical Issues ◽  
Genomic Analysis ◽  
State Level ◽  
The United States ◽  
Genetic Privacy ◽  
Duty To Warn ◽  
Us Congress ◽  
The Us

This chapter examines state and federal laws in the United States that govern legal and ethical issues concerning genetic and genomic analysis for diagnostic purposes; regulation of genetic testing, genetic discrimination, and privacy; and clinical applications of genomics. At the state level, legislatures have enacted laws in various areas, including newborn screening and nondiscrimination and privacy protections. In addition, state courts have addressed some issues concerning genetics, such as the duty to warn. At the federal level, the US Congress has enacted a specific statute, the Genetic Information and Nondiscrimination Act, which protects genetic information. Other federal statutes, which do not address genetics or genomics in particular, also have relevance in the genetics context, including laws that protect against certain forms of discrimination or that regulate laboratories. Federal agencies also play a role, for example, in protecting genetic privacy or regulating genetic tests. Finally, the US Constitution is relevant to genomics, especially concerning reproductive rights, which are pertinent to reproductive genetic testing.

scholarly journals General-Purpose Privacy Regulation and Translational Genomics

2020 ◽  
Vol 48 (1) ◽  
pp. 142-150
Author(s):  
William McGeveran ◽  
Caroline Schmitz
Keyword(s):  
Genetic Data ◽  
General Purpose ◽  
Genetic Privacy ◽  
Privacy Regulation ◽  
Translational Genomics ◽  
Privacy Law ◽  
Privacy Laws ◽  
New Generation

At one time, specialized health privacy laws represented the bulk of the rules regulating genetic privacy, Today, however, as both the field of genomics and the content of privacy law change rapidly, a new generation of general-purpose privacy laws may impose new restrictions on collection, storage, and disclosure of genetic data. This article surveys these laws and considers implications.

Genetic Exceptionalism and Legislative Pragmatism

2007 ◽  
Vol 35 (S2) ◽  
pp. 59-65 ◽  
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.

scholarly journals Routes for breaching and protecting genetic privacy

2013 ◽  
Author(s):  
Yaniv Erlich ◽  
Arvind Narayanan
Keyword(s):  
Genetic Information ◽  
Genetic Basis ◽  
Clinical Care ◽  
Genetic Data ◽  
Privacy Preserving ◽  
Mitigation Strategies ◽  
Human Diseases ◽  
Rapid Progress ◽  
Genetic Privacy

We are entering the era of ubiquitous genetic information for research, clinical care, and personal curiosity. Sharing these datasets is vital for rapid progress in understanding the genetic basis of human diseases. However, one growing concern is the ability to protect the genetic privacy of the data originators. Here, we technically map threats to genetic privacy and discuss potential mitigation strategies for privacy-preserving dissemination of genetic data.

scholarly journals Time to Get Serious about Privacy Policies: The Special Case of Genetic Privacy

2014 ◽  
Vol 42 (1) ◽  
pp. 1-32
Author(s):  
Dianne Nicol ◽  
Meredith Hagger ◽  
Nola Ries ◽  
Johnathon Liddicoat
Keyword(s):  
Genetic Testing ◽  
Genetic Information ◽  
Personal Information ◽  
Genetic Privacy ◽  
Privacy Policies ◽  
Her Family ◽  
Current Regime ◽  
Direct To Consumer ◽  
Privacy Act ◽  
Special Case

Genetic information is widely recognised as being particularly sensitive personal information about an individual and his or her family. This article presents an analysis of the privacy policies of Australian companies that were offering direct-to-consumer genetic testing services in 2012–13. The results of this analysis indicate that many of these companies do not comply with the Privacy Act 1988 (Cth), and will need to significantly reassess their privacy policies now that significant new amendments to the Act have come into force. Whilst the Privacy Commissioner has increased powers under the new amendments, the extent to which these will mitigate the deficiencies of the current regime in relation to privacy practices of direct–to-consumer genetic testing companies remains unclear. Accordingly, it may be argued that a privacy code for the direct-to-consumer genetic testing industry would provide clearer standards. Alternatively it may be time to rethink whether a sui generis approach to protecting genetic information is warranted.

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