In the United States, property rights have been suggested as a possible means of protecting the privacy of genetic samples and information. You have a sense of ownership for all of that, right? Regulation of human genetic research databases, Secondary uses of human tissue collections, 21. Next, arguments with regard to ownership of the human body are examined. Queensland 4003. The exercise of information privacy rights and any property rights that may exist in human genetic samples need not conflict, in the same way that the right of access to medical records does not conflict with a medical practitioner’s ownership of those records. Reform of property law in this context is therefore difficult to achieve, particularly as the direction in which the common law develops cannot be dictated. Coriell Life Sciences, for example, was spun out of the nonprofit Coriell Institute for Medical Research to offer a data-hosting service for genetic information. Our first-ever Techonomy Bio event is June 17th in Mountain View, Calif. Original article published on Techonomy.com. This ability is particularly important to individuals who are concerned with preserving their own samples for the future use and benefit of relatives and descendants … Owning one’s own DNA sample allows transfer of control in accordance with property law principles. (Ahem, NSA.). The Use of Genetic Information in Employment, The use of health information in employment, Types of genetic information used in employment, Current use of genetic information by Australian employers, Future use of genetic information by Australian employers, Evidence of genetic discrimination in Australia, Evidence of genetic discrimination overseas, Guidance for employers on the use of genetic information, Regulatory framework for occupational health and safety, Genetic screening for work-related susceptibilities, Genetic monitoring for workplace-induced conditions, Genetic screening for the protection of third party safety, General comments on workers’ compensation, Parliamentary and international consideration, Considerations applying to parentage testing, Talent identification and performance genes, 40. Collection of information on genetic registers, De-identification of family information on genetic registers, Use and disclosure of information on genetic registers, 23. Essentially Yours: The Protection of Human Genetic Information in Australia (ALRC Report 96), 20. But as people demand more control over their data, the model could shift to put consumers in the driver's seat. Surely we all benefit from individuals electing to share their genetic information with others – it is the basis for how future genetic discoveries will be made. Harmonisation of Forensic Procedures Legislation, Destruction of forensic material and DNA profiles, Identification of missing and deceased persons, Improving the use of DNA evidence at trial, Admissibility of unlawfully obtained DNA evidence, Avenues for obtaining a review of conviction. Consider any number of analogies: cell phone data, credit card data, email information. Genetic testing services provided directly to the public, The harm of non-consensual genetic testing, Options for regulating non-consensual genetic testing, 13. Is there any need for further regulation? ScienceDirect ® is a registered trademark of Elsevier B.V. ScienceDirect ® is a registered trademark of Elsevier B.V. Is genetic information truly ‘exceptional’? The analogy between genetic samples and information, Extending the Privacy Act to fill the gaps, Implications of the alternative view of existing coverage, Australian anti-discrimination law framework. To avoid some of the problems regarding the availability and use of genetic information, it is sometimes suggested to apply the concept of ownership. Genetic Registers and Family Genetic Information.  N Zeps, Submission G047, 14 January 2002; Australian Academy of Science, Submission G097, 21 January 2002; Life Sciences Network, Submission G129, 19 March 2002. ("The cloud" is not an answer.) The Use of Genetic Information in Insurance, Scientific reliability and actuarial relevance, Consent to collection and use of genetic information, Sharing information between related organisations, 29. The landmark Genetic Information Nondiscrimination Act was passed by U.S. Congress in 2008 to prohibit unfair treatment based on DNA information -- particularly among health insurance companies -- but does not apply to providers of life, disability, or long-term care insurance. With that basic protection up in the air, the federal government and many states have passed or are considering legislation that would settle the ownership question, or at least prevent discrimination based on the data. The Regulation of Human Genetic Research, Present regulatory framework for research ethics, Reform of the regulatory framework for human genetic research, 14. In Australia, this would be known as a model Bill, since it has not passed through the legislative process. Stay informed with all of the latest news from the ALRC.  A number of US states have enacted legislation similar to, or influenced by, the GPA. George Street Post Shop Social reactions to rapid scientific change, Law reform in times of rapid scientific change, 05. 20.7 The idea of recognising property rights in human tissue, which includes the genetic material that may be extracted from almost all human cells, is not new.  G Annas, L Glantz and P Roche, ‘Drafting the Genetic Privacy Act: Science, Policy and Practical Considerations’ (1995) 23 Journal of Law, Medicine and Ethics 360, 363. As that piece of the puzzle is addressed, some companies are trying to solve the issue of how and where this data will be stored. The idea is that genetic information is safest when it is stored in one place for a person's whole life, rather than being shipped here and there for various interpretations. 20.9 In 1995, Oregon became the first State in the United States to grant ownership rights in genetic samples to the individual from whom they were obtained, and to that person’s children. This ability is particularly important to individuals who are concerned with preserving their own samples for the future use and benefit of relatives and descendants … Owning one’s own DNA sample allows transfer of control in accordance with property law principles. Today is National Voter Registration Day! Health Professionals and Family Genetic Information, Collection of genetic information by health professionals, Disclosure of genetic information to genetic relatives, 22. In fact, scientists have already demonstrated that it takes remarkably little know-how to link this de-identified information, as it is known, back to its source. As a result of the International Human Genome Project genetic information is rapidly multiplying. Coming to Terms with Genetic Information. Copyright © 1997 Published by Elsevier Ltd. https://doi.org/10.1016/S0277-9536(96)00309-7. , 20.8 A version of the GPA, the Genetic Confidentiality and Nondiscrimination Act was introduced into the United States Congress in 1996. A Human Genetics Commission of Australia, The international trend towards standing advisory bodies, Information and health privacy legislation, Applying the Privacy Act to genetic information, Genetic information and health information. However, the Oregon law was amended in 2001 to specify that genetic samples were not property, but that both genetic samples and information were private and must be protected.  The provision was altered by §15 of Senate Bill 114 of 2001. For people who grew up thinking that possession is nine-tenths of the law, data is too slippery to fit into the usual framework. That means sometimes there will be a number of barriers between you (or anyone) and that information, and other times it will be freely accessible, but in ways that supposedly prevent anyone from knowing whom the data comes from.
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