Call for change to human cloning law to prevent genetic disorder

SMH, 21 September 2017
Authors: Aisha Dow, Melissa Cunningham
“A procedure to create “three-person babies” could be on its way to Australia, with a campaign launched to overhaul a law on human cloning in an attempt to prevent babies from suffering a severe genetic disorder.”
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Direct-to-Consumer Medical Testing in the Era of Value-Based Care

JAMA. 2017; 317(24): 2485-2486.
Author: Kimberly Lovett Rockwell
“This Viewpoint documents the growing market share of direct-to-consumer (DTC) medical testing despite growing recognition that it represents low-value or harmful care and proposes policy options to increase accountability and protect patients from adverse consequences of DTC testing.”
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Merck hack part of a massive global attack

Philly.com, 27 June 2017
Author: Chris Mondics
“A massive ransomware attack Tuesday took down computers across the globe, including the systems of the pharmaceutical firm Merck & Co., which has extensive operations in the Philadelphia area. The attack was detected at computers in Merck facilities in Pennsylvania and New Jersey around 8 a.m., and the company acknowledged it a few hours later. The attack on Merck was part of a larger digital assault worldwide.”
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Preventing The Spread Of HIV With One Simple Gadget

Forbes, 28 June 2017
Author: Lee Bell
“In 2007, the World Health Organization (WHO) and UNAIDS cited that Voluntary Medical Male Circumcision can reduce the risk of HIV infection by approximately 60 percent in high risk areas such as Sub Saharan Africa. So to save millions of lives and billions of dollars in long-term HIV/AIDS healthcare costs, UNAIDS is leading a campaign that involves the circumcision of 27 million men. But how do you get million so men to willingly opt into such a personal and potentially dangerous procedure? You invent a device that makes it easy, painless and cheap.”
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Navigating the ethical clash between access to health information and proprietary databases

MedicalXpress, 15 May 2017
Source: Baylor College of Medicine
“Sharing medical information, including genomic data, has the potential to benefit public health. However, companies that generate that information have a legal right to protect it as a trade secret. Legal and ethical conflict exists between individuals’ right to access their personal health information and the protection of these trade secrets. The data gathered from these genetic tests can provide important insights when making an individual diagnosis or pursuing clinical treatments, thereby having a direct impact on patient care. On the other hand, if companies and innovators are able to keep certain pieces of data and their processes secret, they are more easily able to recover their investment in the project and use it to finance new diagnostic tests.”
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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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A four-part working bibliography of neuroethics: part 3 – “second tradition neuroethics” – ethical issues in neuroscience

Philosophy, Ethics, and Humanities in Medicine 2016 11:7
Authors: Amanda Martin, Kira Becker, Martina Darragh and James Giordano
“Neuroethics describes several interdisciplinary topics exploring the application and implications of engaging neuroscience in societal contexts. To explore this topic, we present Part 3 of a four-part bibliography of neuroethics’ literature focusing on the “ethics of neuroscience.”
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Brexit regulatory uncertainty ‘threatens UK med tech’

Reuters, 2 May 2017
Authors: Ben Hirschler, Susan Fenton
“Regulatory uncertainty in the wake of Brexit could leave Britain’s multi-billion-pound medical technology industry out in the cold, with separate regulatory systems threatening exports and jobs. In a new report, the Institution of Mechanical Engineers (IME) called on the British government to harmonize its post-Brexit rules with EU regulations on medical devices – a category covering everything from heart stents to walking aids – or risk losing billions of pounds in exports.”
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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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F.D.A. Will Allow 23andMe to Sell Genetic Tests for Disease Risk to Consumers

NYT, 6 April 2017
Author: Gina Kolata
“For the first time, the Food and Drug Administration said it would allow a company to sell genetic tests for disease risk directly to consumers, providing people with information about the likelihood that they could develop various conditions, including Parkinson’s and Alzheimer’s. The move on Thursday is a turnaround for the agency, which had imposed a moratorium in 2013 on disease tests sold by 23andMe. The decision is expected to open the floodgates for more direct-to-consumer tests for disease risks, drawing a road map for other companies to do the same thing.”
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