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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How consent requirements may shape teen mental health research

Reuters, 6 April 2017
Author: Lisa Rapaport
“Requiring teens to get permission from their parents to participate in studies about behavioral health may make it harder to understand adolescent psychology – especially when drugs and alcohol are involved. “Requiring parental consent may introduce a systematic bias that excludes certain segments of our population,” said lead study author Chao Liu of Oklahoma State University in Stillwater. In the U.S., minors under age 18 generally need permission from their parents to get medical treatment or participate in research.”
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How ethical is sexual assault research?

The Conversation, 5 April 2017
Author: Bianca Fileborn
“Thirty-nine Australian universities will now individually release the findings of a national research project on sexual assault and harassment on campus. This announcement follows intense criticism from student bodies and sexual assault activists after it was initially announced that the findings for individual universities would not be made public. Clearly, this case raises some substantial questions about what constitutes “ethical” research on sexual assault.”
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Alberta rushed $10-million grant, eliminated ethical oversight, for unproven health program

CBC, 4 April 2017
Authors: Jennie Russell, Charles Rusnell
“Six days before Alberta Health rushed to deliver a $10-million grant to a private alternative-health foundation, the ministry abruptly changed the grant’s purpose, eliminating the need for ethics approval for what experts say was a human-subject experiment on thousands of Alberta seniors. The decision was made against the advice of officials from several ministries who had determined the Pure North program was not adequately supported by scientific evidence, could not prove the incredible health and economic benefits it claimed, and could cause adverse health effects in participants.”
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Ethics complicate clinical interpretation & reporting of human genome sequence results

EurekAlert, 3 April 2017
Author: Mary Ann Liebert
“Medical use of a patient’s genomic sequence information can improve diagnostic capabilities and enable personalized therapies, but technical and practical barriers to understanding the clinical implications of sequence data and interpreting them for patients are contributing to ongoing ethical concerns. In the article entitled “From Sequence Data to Returnable Results: Ethical Issues in Variant Calling and Interpretation,” the authors discuss the potential harm that can be caused by overstating a result or reporting a false-positive finding.”
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Nurofen manufacturer Reckitt Benckiser fined $6 million for misleading customers after failed High Court appeal

ABC, 5 April 2016
Author: Amy Bainbridge
“The manufacturer of Nurofen has been ordered to pay a $6 million fine for misleading consumers with its specific pain relief range, after the High Court rejected its appeal. The Federal Court found the products were misleading because they all contained the same active ingredient and did the same thing, despite claims they targeted different parts of the body. The company was initially fined $1.7 million, but that was increased to $6 million after the consumer watchdog appealed.”
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Addressing Ethical Lapses in Research

JAMA Intern Med. 2017;177(4): 461-462.
Authors: Bernard Lo, Deborah Grady
“The study “Association of Testosterone Levels With Anemia in Older Men,” published in this week’s JAMA Internal Medicine, contains an ethical error. Hemoglobin levels were measured in all 788 participants at baseline, and every 3 months during the 1-year duration of the trial. Blood obtained at baseline was stored until the end of the trial, when tests for the cause of anemia were performed. Participants with hemoglobin levels less than 10.0 g/dL at baseline were excluded from the trial and “referred to their primary care providers for evaluation of anemia.” However, the 126 participants (16%) with mild anemia (hemoglobin levels between 10.0 and 12.7 g/dL) were not told of this condition.”
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Smart homes, private homes? An empirical study of technology researchers’ perceptions of ethical issues in developing smart-home health technologies

BMC Medical Ethics 2017 18:23
Authors: Giles Birchley, Richard Huxtable, Madeleine Murtagh, Ruud ter Meulen, Peter Flach, Rachael Gooberman-Hill
“Smart-home technologies, comprising environmental sensors, wearables and video are attracting interest in home healthcare delivery. Development of such technology is usually justified on the basis of the technology’s potential to increase the autonomy of people living with long-term conditions. Studies of the ethics of smart-homes raise concerns about privacy, consent, social isolation and equity of access. Few studies have investigated the ethical perspectives of smart-home engineers themselves. By exploring the views of engineering researchers in a large smart-home project, we sought to contribute to dialogue between ethics and the engineering community.”
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‘Default’ choices have big impact, but how to make sure they’re used ethically?

The Conversation, 4 April 2017
Authors: Mary Steffel, Elanor Williams, Ruth Pogacar
“The power of defaults to guide people’s choices has made them an extremely popular way for policymakers and marketers alike to nudge people toward a particular decision. But it has also raised questions about how to ensure that defaults are used ethically and responsibly.”
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