Panel Comment: The Impact of the Genetic Privacy Act on Medicine

1995 ◽  
Vol 23 (4) ◽  
pp. 378-381 ◽  
Author(s):  
Philip R. Reilly
Keyword(s):  
Genetic Privacy ◽  
Privacy Act ◽  
The Impact

Conferring a Federal Property Right in Genetic Material: Stepping into the Future with the Genetic Privacy Act

1996 ◽  
Vol 22 (1) ◽  
pp. 109-134
Author(s):  
Michael M.J. Lin
Keyword(s):  
Ethical Issues ◽  
Raw Materials ◽  
Genetic Diseases ◽  
Genetic Material ◽  
Genetic Privacy ◽  
Genetic Characteristics ◽  
Dna Evidence ◽  
Privacy Act ◽  
National Rule ◽  
Social And Ethical Issues

“A wise man can hear profit in the wind.”—Pel, quoting the Ferengi Rules of AcquisitionThe expansive biotechnology field includes many facets of medical research, from drug discovery and design, to gene therapy and the diagnosis of genetic diseases, to the use of deoxyribonucleic acid (DNA) evidence to identify individuals and genetic characteristics. The biotechnology industry requires a readily available supply of biological raw materials; much of current research is founded on cells, tissues, organs, fetal tissues and placentas, and other samples derived from human donors. However, this growing need for raw materials presents many economic, social, and ethical issues to society, researchers, and the existing legal regime. Furthermore, because courts and legislatures fail to provide a clear national rule regarding biological materials, the resulting legal uncertainties chill research and investment. Although very few cases address property rights in a person’s organs, tissues, and genetic material, the issues of autonomy and privacy involved evoke analogies to deep-seated issues such as slavery, the freezing of embryos, and abortion.

Panel Comment: The Attempt to Pass the Genetic Privacy Act in Maryland

1995 ◽  
Vol 23 (4) ◽  
pp. 367-370 ◽  
Author(s):  
Neil A. Holtzman
Keyword(s):  
Informed Consent ◽  
Genetic Analysis ◽  
Dna Analysis ◽  
Dna Testing ◽  
Genetic Privacy ◽  
Privacy Act ◽  
Judicial Proceedings ◽  
Exclusive Property ◽  
Privacy Legislation ◽  
Unauthorized Disclosure

The Genetic Privacy Act (GPA) is a comprehensive effort to protect individuals from unauthorized analysis of their DNA and from unauthorized disclosure of information resulting from genetic analysis. Irrespective of merit, every bill must survive legislative scrutiny. This is a considerable challenge, particularly for a bill as complex and far-reaching as the GPA. To illustrate my point, I describe the fate of two bills introduced into the Maryland Senate in 1995 by Senator Jennie Forehand. The first, also entitled the Genetic Privacy Act (S. 645), was a slightly modified version of the model legislation prepared by Annas, Glantz, and Roche. After a hearing, the bill received a 9-2 unfavorable vote from the Economic and Environmental Affairs Committee. The second was a much shorter bill, DNA Testing – Informed Consent and Confidentiality (S. 707), which simply stated that “DNA analysis may only be performed with the informed consent of the person being analyzed” and that the results of such analysis “are the exclusive property of the person tested, are confidential, and may not be disclosed without the consent of the person being tested.” This bill had a hearing but was never put to a vote by the Judicial Proceedings Committee. My principal aim is to examine the testimony on these bills. I will conclude with some suggestions about accomplishing the goals of genetic privacy legislation.

GRANTING PATIENTS ACCESS TO RECORDS: THE IMPACT OF THE PRIVACY ACT AT A FEDERAL HOSPITAL

1978 ◽  
Vol 29 (5) ◽  
pp. 288-289 ◽  
Author(s):  
J. Fred Seitz ◽  
Archibald Ward ◽  
William H. Dobbs
Keyword(s):  
Privacy Act ◽  
The Impact

A Proposal for a Federal Genetic Privacy Act

2003 ◽  
Vol 24 (1) ◽  
pp. 109-126 ◽  
Author(s):  
Jonathan Weems
Keyword(s):  
Genetic Privacy ◽  
Privacy Act

scholarly journals The Impact of Privacy Legislation on the Workplace: The New Zealand Experience

1970 ◽  
Author(s):  
Paul Roth
Keyword(s):  
New Zealand ◽  
Privacy Protection ◽  
Bargaining Power ◽  
Balance Of Power ◽  
Job Applicants ◽  
Employment Relationship ◽  
Privacy Act ◽  
Workplace Privacy ◽  
Privacy Legislation ◽  
The Impact

This paper describes how New Zealand's Privacy Act applies in practice to the workplace, and what its effect has been in relation to the protection of workers’ privacy interests. While there are a few areas where the legislation is effective, it has been largely a disappointment for workers, who are increasingly subject to privacy-intrusive practices in the workplace. Individuals’ interests have always tended to be overridden in institutional and contractual settings where individuals lack bargaining power. The main argument of this paper is that New Zealand's Privacy Act, now in force for over eleven years, has hardly affected the balance of power in relation to workplace privacy matters. The irony is that those who are best placed to take advantage of the legislation in the employment setting are unsuccessful job applicants and dismissed employees; i.e. those who are not actually in a subsisting employment relationship. Despite the existence of privacy legislation, it is employment law that remains of paramount importance for the protection of workers’ privacy interests. The New Zealand experience suggests that effective workplace privacy protection can only be attained through specific sectorial regulation that overrides managerial prerogative and the ability of workers to contract out or their rights.

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.

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 The impact of cross-kingdom molecular forensics on genetic privacy

Microbiome ◽  
2021 ◽  
Vol 9 (1) ◽  
Author(s):  
Eran Elhaik ◽  
Sofia Ahsanuddin ◽  
Jake M. Robinson ◽  
Emily M. Foster ◽  
Christopher E. Mason
Keyword(s):  
Genetic Data ◽  
Computational Prediction ◽  
Genetic Discrimination ◽  
Genetic Privacy ◽  
Reasonable Expectation ◽  
Left Behind ◽  
Policy Frameworks ◽  
Host Genetic ◽  
The Impact ◽  
Derived Data

AbstractRecent advances in metagenomic technology and computational prediction may inadvertently weaken an individual’s reasonable expectation of privacy. Through cross-kingdom genetic and metagenomic forensics, we can already predict at least a dozen human phenotypes with varying degrees of accuracy. There is also growing potential to detect a “molecular echo” of an individual’s microbiome from cells deposited on public surfaces. At present, host genetic data from somatic or germ cells provide more reliable information than microbiome samples. However, the emerging ability to infer personal details from different microscopic biological materials left behind on surfaces requires in-depth ethical and legal scrutiny. There is potential to identify and track individuals, along with new, surreptitious means of genetic discrimination. This commentary underscores the need to update legal and policy frameworks for genetic privacy with additional considerations for the information that could be acquired from microbiome-derived data. The article also aims to stimulate ubiquitous discourse to ensure the protection of genetic rights and liberties in the post-genomic era.

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