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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ACT Health Minister announces data collection review after concerns about accuracy

SMH, 14 February 2017
Author: Katie Burgess
“The accuracy of ACT Health’s performance figures are again under scrutiny, more than five years after an employee was stood down for doctoring emergency service data. ACT health minister Meegan Fitzharris has ordered an urgent review into ACT Health’s data collection after the department failed to provide figures on its emergency department to the Productivity Commission for its annual comparison of the performance of states and territories.”
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Ethical framework for the detection, management and communication of incidental findings in imaging studies, building on an interview study of researchers’ practices and perspectives

BMC Medical Ethics 2017 18:10
Authors: Eline M. Bunnik, Lisa van Bodegom, Wim Pinxten, Inez D. de Beaufort, Meike W. Vernooij
“As thousands of healthy research participants are being included in small and large imaging studies, it is essential that dilemmas raised by the detection of incidental findings are adequately handled. Current ethical guidance indicates that pathways for dealing with incidental findings should be in place, but does not specify what such pathways should look like.”
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A New Day For Oversight Of Human Subjects Research

Health Affairs Blog, 6 February 2017
Author: Holly Fernandez Lynch
“On January 19, 2017—President Obama’s last day in office—the Federal Register published a Final Rule to amend the Federal Policy for the Protection of Human Subjects, the set of regulations applicable to most human subjects research conducted or supported with federal funds, and more typically referred to as the “Common Rule.” This rule change had been a long time coming, with an Advance Notice of Proposed Rule Making (ANPRM) published in July 2011 and a Notice of Proposed Rule Making (NPRM) published in September 2015. The seriousness of its impact on the research community, patients, and the public is evidenced by the more than 3,300 public comments submitted during the rulemaking process. So what changed?”
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Travel ban threatens medical research and access to care in the US, medical groups warn

BMJ 2017; 356:j545
Author: Michael McCarthy
“President Donald Trump’s executive order banning nationals from seven Muslim majority nations, as well as all refugees, from entering the county threatens to damage the quality of medical research and healthcare in the US, medical groups and academic centers have warned.”
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You might be in a medical experiment and not even know it

The Week, 1 February 2017
Author: Alice Dreger
“In the long view, modern history is the story of increasing rights of control over your body. Medical experimentation is supposed to be following the same historical trend. the Nuremberg Code stated unequivocally that the voluntary, informed consent of the human subject is essential. Every research ethics code since then has incorporated this most fundamental principle. Yet today, more and more medical experimenters in the United States appear to circumvent getting the voluntary, informed consent of those whose bodies are being used for research.”
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Industry partnerships continue to muddy waters

Doctor Portal, 30 January 2017
Author: Sarah Colyer
“A study in JAMA Internal Medicine found that financial ties of principal study investigators increased the likelihood of positive outcomes in a random sample of 190 randomised controlled trials of drug efficacy. The prevalence of financial ties of principal investigators was 76% among positive studies and 49% among negative studies. This association remained significant after adjusting for study funding source.”
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