Undermining Genetic Privacy? Employee Wellness Programs and the Law

NEJM, 24 May 2017
Authors: Kathy L. Hudson, Karen Pollitz
“Genetic information is becoming ubiquitous in research and medicine. The cost of genetic analysis continues to fall, and its medical and personal value continues to grow. Anticipating this age of genetic medicine, policymakers passed laws and regulations years ago to protect Americans’ privacy and prevent misuse of their health-related information. But a bill moving through the House of Representatives, called the Preserving Employee Wellness Programs Act (H.R. 1313), would preempt key protections. Because the bill, which was sent to the full House by the Education and the Workforce Committee in March, would substantially change legal protections related to the collection and treatment of personal health and genetic information by workplace wellness programs, it should be on the radar screens of physicians, researchers, and the public.”
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Toward Responsible Human Genome Editing

JAMA 2017; 317(18):1829-1830
Authors: Richard O. Hynes; Barry S. Coller; Matthew Porteus
“The speed at which the science is advancing raises important questions about human genome editing, such as how to balance potential benefits against risks of unintended harms, how to regulate the use of genome editing and incorporate societal values into policy decisions, and how to respect the diverse perspectives of individuals, nations, and cultures that will influence whether and how to use these technologies. A new report from the US National Academies of Sciences and Medicine addresses these questions and makes recommendations for the application and oversight of human genome editing in 3 major settings.”
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The elusive ideal of inclusiveness: lessons from a worldwide survey of neurologists on the ethical issues raised by whole-genome sequencing

BMC Medical Ethics 2017 18:28
Authors: Thierry Hurlimann, Iris Jaitovich Groisman, Béatrice Godard
“The anticipation of ethical issues that may arise with the clinical use of genomic technologies is crucial to envision their future implementation in a manner sensitive to local contexts. Yet, populations in low- and middle-income countries are underrepresented in studies that aim to explore stakeholders’ perspectives on the use of such technologies. Within the framework of a research project entitled “Personalized medicine in the treatment of epilepsy”, we sought to increase inclusiveness by widening the reach of our survey, inviting neurologists from around the world to share their views and practices regarding the use of whole-genome sequencing in clinical neurology and its associated ethics.”
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The Loopholes in the Law Prohibiting Genetic Discrimination

The Atlantic, 14 March 2017
Author: Sarah Zhang
“When the Genetic Information Nondiscrimination Act passed in 2008, supporters hailed it as the “first major civil-rights bill of the century.” GINA was unusually forward-looking; it protected against a form of discrimination that was not yet common. Under the law, employers and health insurance companies could not request genetic test results and discriminate based upon them.”
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Human genome editing report strikes the right balance between risks and benefits

The Conversation, 16 February 2017
Author: Merlin Crossley
“If you recognise the words “CRISPR-mediated gene editing”, then you’ll know that our ability to alter DNA has recently become much more efficient, faster and cheaper. This has inevitably led to serious discussions about gene therapy, which is the direct modification of someone’s DNA to rectify a genetic disorder, such as sickle cell anaemia or haemophilia. And you may also have heard of deliberate genetic enhancement, to realise a healthy person’s dreams of improving their genome.”
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Human Gene Editing Receives Science Panel’s Support

NYT Health, 14 February 2017
Author: Amy Harmon
“An influential science advisory group formed by the National Academy of Sciences and the National Academy of Medicine on Tuesday lent its support to a once-unthinkable proposition: the modification of human embryos to create genetic traits that can be passed down to future generations. This type of human gene editing has long been seen as an ethical minefield. Researchers fear that the techniques used to prevent genetic diseases might also be used to enhance intelligence, for example, or to create people physically suited to particular tasks, like serving as soldiers.”
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Is Mitochondrial Donation Germ-Line Gene Therapy? Classifications and Ethical Implications

Bioethics, Volume 31, Issue 1, January 2017, p55–67
Authors: Ainsley J. Newson, Anthony Wrigley
“The classification of techniques used in mitochondrial donation, including their role as purported germ-line gene therapies, is far from clear. These techniques exhibit characteristics typical of a variety of classifications that have been used in both scientific and bioethics scholarship. This raises two connected questions, which we address in this paper: (i) how should we classify mitochondrial donation techniques?; and (ii) what ethical implications surround such a classification? First, we outline how methods of genetic intervention, such as germ-line gene therapy, are typically defined or classified. We then consider whether techniques of mitochondrial donation fit into these, whether they might do so with some refinement of these categories, or whether they require some other approach to classification.”
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