Insurers discriminating against people who get genetic test results could hobble research, bioethicists warn

SMH, 8 November 2017
Author: Kate Aubusson
“Insurers are able to discriminate against individuals who undergo genetic testing, and that threatens to hobble genomic research, bioethics and law experts have warned in a recent paper published in Public Health Genomics. Anyone who receives their results of genetic testing as part of a research project needs to disclose them to insurers if asked, despite the Human Genetics Society of Australasia calling for research findings to be excluded. Insurers can deny cover or hike up premiums for healthy individuals who discover they carry a mutation for a condition they may never develop based on the testing results, the authors warned.”
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Informed Consent to Study Purpose in Randomized Clinical Trials of Antibiotics, 1991 Through 2011

JAMA Intern Med. 2017;177(10):1-8.
Authors: Peter Doshi, Peter Hur, Mark Jones, et al.
“Potential research participants may assume that randomized trials comparing new interventions with older interventions always hypothesize greater efficacy for the new intervention, as in superiority trials. However, antibiotic trials frequently use “noninferiority” hypotheses allowing a degree of inferior efficacy deemed “clinically acceptable” compared with an older effective drug, in exchange for nonefficacy benefits (eg, decreased adverse effects). Considering these different benefit-harm trade-offs, proper informed consent necessitates supplying different information on the purposes of superiority and noninferiority trials.”
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Pathogenic variants in the healthy elderly: unique ethical and practical challenges

Journal of Medical Ethics 2017; 43: 714-722.
Author: Paul Lacaze, Joanne Ryan, Robyn Woods, Ingrid Winship, John McNeil
“Genetic research into ageing, longevity and late-onset disease is becoming increasingly common. Yet, there is a paucity of knowledge related to clinical actionability and the return of pathogenic variants to otherwise healthy elderly individuals. Whether or not genetic research in the elderly should be managed differently from standard practices adapted for younger populations has not yet been defined. In this article, we provide an overview of ethical and practical challenges in preparing for a genetic study of over 14?000 healthy Australians aged 70?years or older enrolled in the ASPirin in Reducing Events in the Elderly (ASPREE) Healthy Ageing Biobank.”
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Why health services research needs bioethics

Journal of Medical Ethics 2017; 43: 655-656.
Author: Lucy Frith
“Health services research brings together a wide variety of disciplines and would seem ideally placed to include ethics. However, if you search health services research journals and conference programmes there is very little consideration of ethics as a substantive topic and often scant attention paid to the ethical issues that might be raised by an intervention or policy. Ethics and ethical issues are generally confined to discussions over priority setting, and occasionally health technology assessment, with other areas of health service research seldom engaging in ethical debate.”
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Current state of genomic policies in healthcare among EU member states: results of a survey of chief medical officers

European Journal of Public Health, 27(5), 2017, 931–937
Authors: W. Mazzucco R. Pastorino T. Lagerberg et al.
“A need for a governance of genomics in healthcare among European Union (EU) countries arose during an international meeting of experts on public health genomics (PHG). We have conducted a survey on existing national genomic policies in healthcare among Chief Medical Officers (CMOs) of the 28 EU member states, plus Norway.”
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The United Kingdom Sets Limits on Experimental Treatments: The Case of Charlie Gard

JAMA. 2017;318(11):1001-1002
Author: Robert D. Truog
“The case of Charlie Gard in London, England, has been the focus of international attention, generating polarized views about the use of experimental treatments. On one side are those who hold that patients should be able to purchase whatever treatments they desire and can afford; on the other are those who maintain that governments must play a regulatory role in protecting patients from harm and that unproven therapies must meet a threshold of scientific validity before they are offered, regardless of the ability of the patient to pay.”
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Informed consent and registry-based research – the case of the Danish circumcision registry

BMC Medical Ethics 2017 18:53
Authors: Thomas Ploug, Søren Holm
“Research into personal health data holds great potential not only for improved treatment but also for economic growth. In these years many countries are developing policies aimed at facilitating such research often under the banner of ‘big data’. A central point of debate is whether the secondary use of health data requires informed consent if the data is anonymised.”
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Microneedle Patches for Flu Vaccination Successful in First Human Clinical Trial

Georgia Tech, 27 June 2017
Author: John Toon
“Despite the potentially severe consequences of illness and even death, only about 40 percent of adults in the United States receive flu shots each year; however, researchers believe a new self-administered, painless vaccine skin patch containing microscopic needles could significantly increase the number of people who get vaccinated. A phase I clinical trial found that influenza vaccination using Band-Aid-like patches with dissolvable microneedles was just as effective in generating immunity against influenza. The microneedle patch vaccine could also save money because it is easily self-administered, could be transported and stored without refrigeration, and is easily disposed of after use without sharps waste.”
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Secondhand smoke exposure before birth may affect lungs into adulthood

Medical News Today, 29 June 2017
Author: Catharine Paddock
“Secondhand smoke is that produced by the burning of tobacco products such as cigars, cigarettes, and pipes that can be inhaled by people nearby. Breathing in secondhand smoke is also known as passive smoking. Smoke that is exhaled by someone who is smoking is also classed as secondhand smoke. Hundreds of the 7,000 chemicals in tobacco smoke are toxic – that is, they cause some degree of harm to the body. These include 70 that can cause cancer. Adult susceptibility to lung diseases may depend on prenatal exposure to secondhand smoke.”
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