Recent advances in technology have significantly improved the accuracy of genetic testing and analysis, and substantially reduced its cost, resulting in a dramatic increase in the amount of genetic information generated, analysed, shared, and stored by diverse individuals and entities. Given the diversity of actors and their interests, coupled with the wide variety of ways genetic data are held, it has been difficult to develop broadly applicable legal principles for genetic privacy. This article examines the current landscape of genetic privacy to identify the roles that the law does or should play, with a focus on federal statutes and regulations, including the Health Insurance Portability and Accountability Act (HIPAA) and the Genetic Information Nondiscrimination Act (GINA). After considering the many contexts in which issues of genetic privacy arise, the article concludes that few, if any, applicable legal doctrines or enactments provide adequate protection or meaningful control to individuals over disclosures that may affect them. The article describes why it may be time to shift attention from attempting to control access to genetic information to considering the more challenging question of how these data can be used and under what conditions, explicitly addressing trade-offs between individual and social goods in numerous applications.
There has been little, if any, discussion of the issue as of now b. There has been discussion among researchers, but little discussion among policy makers c. There has been discussion among both researchers and policy makers d. I am not sure -or other answer 1.1 In Australia, genomic research would require ethics approval like any other human research. DTP research would also attract the general requirements for approving human research, including minimizing risk and ensuring consent (Chapter 2.1-2.3 National Statement). In addition, there are specific requirements for Genomic Research in the National Statement in Chapter 3.3. Any proposed DTP genomic research would need to comply with the specific requirements of Chapter 3.3 to be satisfactorily addressed for ethical approval. 1.2 The National Health and Medical Research Council has the issue of Direct to Customer Genetic Testing under consideration and has published three relevant information documents. 1 1.3 The Commonwealth Australia Government, Department of Health has issued guidance for the Provision of Direct-to-Consumer Genetic Tests: Guiding Principles for Providers. 2 The Australian Genomics Health Alliance (AGHA) published a news page on Understanding Direct-to-Consumer Genetic Testing, with information on clinical-grade testing. 3 2. Assume that a researcher in your country wants to conduct DTP genomic research with participants in your country and that such research is subject to IRB/REC review. Please describe the conditions for IRB/ REC approval, if it could be approved at all.
Bias and privacy concerns cloud police use of genetics
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