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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Scientists Battle In Court Over Lucrative Patents For Gene-Editing Tool

NPR, 5 December 2016
Author: Richard Harris
“A gene-editing technology called CRISPR-cas9 could be worth billions of dollars. But it’s not clear who owns the idea. U.S. patent judges will hear oral arguments to help untangle this issue, which has far more at stake than your garden-variety patent dispute. “This is arguably the biggest biotechnology breakthrough in the past 30 or 40 years, and controlling who owns the foundational intellectual property behind that is consequentially pretty important,” says Jacob Sherkow, a professor at the New York Law College.”
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How Your Genetic Sequence Can Be Exploited By The Supplement Industry

Forbes, 14 November 2016
Author: Britt Marie Hermes
“The alternative health industry is widely broadcasting that so-called dangerous genetic variation is lurking in the human population, causing a public health crisis that is ignored by the medical community.”
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National ethics guidance in Sub-Saharan Africa on the collection and use of human biological specimens: a systematic review

BMC Medical Ethics 2016 17:64
Authors: Francis Barchi, Madison T. Little
“Ethical and regulatory guidance on the collection and use of human biospecimens (HBS) for research forms an essential component of national health systems in Sub-Saharan Africa (SSA), where rapid advances in genetic- and genomic-based technologies are fueling clinical trials involving HBS and the establishment of large-scale biobanks.”
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