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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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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Should research ethics committees police reporting bias?

BMJ 2017; 356: j1501
Authors: Simon E Kolstoe, Daniel R Shanahan, Janet Wisely
“Progress through the application of science cannot be achieved if the results of scientific studies are not communicated appropriately. This is particularly relevant in medical research, where experiments are often conducted on human volunteers. Expensive new innovations cannot be produced without returns for investigators, but the distortion of the evidence base by long term withholding of data, either for financial gain or simply through negligence, can do real harm to patients.”
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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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