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.

9. Genetic Information

Medical Law ◽  
2019 ◽  
pp. 470-505
Author(s):  
Emily Jackson
Keyword(s):  
Genetic Testing ◽  
Genetic Information ◽  
Genetic Discrimination ◽  
Third Parties ◽  
Test Results ◽  
Genetic Privacy ◽  
Direct To Consumer ◽  
Genetic Test Results ◽  
Recent Developments ◽  
Dna Profiles

All books in this flagship series contain carefully selected substantial extracts from key cases, legislation, and academic debate, providing students with a stand-alone resource. This chapter examines the regulation of access to genetic information. It first discusses various third parties’ interests in genetic test results and DNA profiles, and the extent to which genetic privacy is protected by the law. The chapter then considers the issue of whether genetic discrimination should be treated in the same way as other illegitimate discriminatory practices and also discusses recent developments in the field of genetics, namely direct-to-consumer genetic testing and pharmacogenetics.

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

1995 ◽  
Vol 23 (4) ◽  
pp. 360-366 ◽  
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.

scholarly journals Direct-to-Consumer Genetic Testing Data Privacy: Key Concerns and Recommendations Based on Consumer Perspectives

2019 ◽  
Vol 9 (2) ◽  
pp. 25 ◽  
Author(s):  
Rachele M. Hendricks-Sturrup ◽  
Christine Y. Lu
Keyword(s):  
Genetic Testing ◽  
Genetic Information ◽  
Data Privacy ◽  
Reading Levels ◽  
Consumer Privacy ◽  
Direct To Consumer ◽  
Consumer Concerns ◽  
Testing Data ◽  
Consumer Perspectives ◽  
Health Consumers

Direct-to-consumer genetic testing (DTC-GT) companies are engaging health consumers in unprecedented ways and leveraging the genetic information they collect to further engage health companies. This has produced controversy about DTC-GT consumer expectations, standards, and perceptions of privacy. In this commentary, we highlight recent events involving DTC-GT companies and controversy about privacy that followed those events and discuss recent studies that have explored DTC-GT consumer concerns about privacy. We discuss DTC-GT company standards of upholding consumer privacy and the general accessibility of DTC-GT company terms of use agreements and privacy policies that are written at reading levels above that of many consumers. We conclude that broader discussions and more research are needed to identify DTC-GT consumer concerns about and expectations of privacy. We anticipate that our recommendations will advance discussions on consumer privacy expectations and protections in an era of increasing engagement in DTC-GT.

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.

Direct to consumer genetic testing and the libertarian right to test

2017 ◽  
Vol 44 (11) ◽  
pp. 787-789 ◽  
Author(s):  
Wendy Elizabeth Bonython ◽  
Bruce Baer Arnold
Keyword(s):  
Genetic Testing ◽  
Physical Properties ◽  
Prima Facie ◽  
Genetic Privacy ◽  
Physical Body ◽  
Direct To Consumer ◽  
Rights And Interests ◽  
Privacy Violation ◽  
The Right ◽  
Regulatory Intervention

Loi recently proposed a libertarian right to direct to consumer genetic testing (DTCGT)— independent of autonomy or utility—reflecting Cohen’s work on self-ownership and Hohfeld’s model of jural relations. Cohen’s model of libertarianism dealt principally with self-ownership of the physical body. Although Loi adequately accounts for the physical properties of DNA, DNA is also an informational substrate, highly conserved within families. Information about the genome of relatives of the person undergoing testing may be extrapolated without requiring direct engagement with their personal physical copy of the genome, triggering rights and interests of relatives that may differ from the rights and interests of others, that is, individual consumers, testing providers and regulators. Loi argued that regulatory interference with exercise of the right required justification, whereas prima facie exercise of the right did not. Justification of regulatory interference could include ‘conflict with other people’s rights’, ‘aggressive’ use of the genome and ‘harming others’. Harms potentially experienced by relatives as a result of the individual’s exercise of a right to test include breach of genetic privacy, violation of their right to determine when, and if, they undertake genetic testing and discrimination. Such harms may justify regulatory intervention, in the event they are recognised; motives driving ‘aggressive’ use of the genome may also be relevant. Each of the above criteria requires clarification, as potential redundancies and tensions exist between them, with different implications affecting different groups of rights holders.

Physicians' Attitudes toward Disclosure of Genetic Information to Third Parties

1993 ◽  
Vol 21 (2) ◽  
pp. 238-240 ◽  
Author(s):  
Gail Geller ◽  
Ellen S. Tambor ◽  
Barbara A. Bernhardt ◽  
Gary A. Chase ◽  
Karen J. Hofman ◽  
...  
Keyword(s):  
Primary Care ◽  
Genetic Testing ◽  
Genetic Information ◽  
Primary Care Physicians ◽  
Primary Care Providers ◽  
Third Parties ◽  
Care Providers ◽  
Physician Patient Relationship ◽  
Her Family ◽  
Physician Patient

Confidentiality is a cornerstone of the physician-patient relationship. Breaches of confidentiality in the context of genetic testing are of particular concern for a number of reasons. First, genetic testing reveals information not only about a particular patient, but also about his or her family members. Second,genetic testing can label healthy people as “at risk,” subjecting them to possible stigmatization or discrimination by third parties. Third, as genetic testing becomes more widespread and is incorporated into primary care, breaches of confidentiality might inadvertently occur more frequently because primary care providers may not be trained to understand the uniqueness of genetic information. Until now, genetic services have been provided primarily by medical geneticists and genetic counselors. However, with the proliferation of new genetic presymptomatic and carrier tests, primary care physicians are going to become increasingly involved in genetic testing. Currently, little is known about physicians’ attitudes (other than those of medical geneticists) toward disclosure of confidential genetic information to third parties.

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 Privacy ◽  
Privacy Policies ◽  
Special Case

Genetic Privacy

2011 ◽  
pp. 104-123
Author(s):  
Christina M. Akrivopoulou
Keyword(s):  
Public Interest ◽  
Genetic Information ◽  
Individual Autonomy ◽  
Privacy Rights ◽  
Genetic Privacy ◽  
Genetic Exceptionalism ◽  
Her Family ◽  
Definition Of ◽  
The Individual ◽  
Shared Character

Privacy is a right with many aspects. Although, a uniform approach on privacy is quite often sought, a consensus is growing that there are not only one but many privacy rights. This chapter explores whether there is in fact a right to protect our genetic privacy, since this is a right quite unique in its characteristics and is certainly not identified with our general presumptions about privacy. Its uniqueness lies in the fact, that apart form the dominant definition of privacy as a right to be let alone, as an individualistic right, genetic privacy protects not only the individual but also the members of his/her family. The present paper is examining the ‘hereditary’ and ‘shared’ character of our genetic information in an attempt to shape a right to genetic privacy that is based on the equilibrium of individual autonomy, family and public interest. In order to support such an argument, the premises of our genetic self are examined in connection with autonomy and its boundaries, mainly paternalism and genetic exceptionalism. Along this line, basic notions of the liberal privacy theory are critically examined, mainly the notions of control, confidentiality and consent, so as to maintain the existence of a right to genetic privacy that can enhance the individual’s autonomy without founding it on its selfish, individual interests.

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

1997 ◽  
Vol 25 (4) ◽  
pp. 256-272 ◽  
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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