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.”
Find article here.

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.”
Find article here.

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.”
Find article here.

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.”
Find article here.

The doctor’s dilemma: is it ever good to do harm?

The Guardian, 9 February 2017
Author: Gwen Adhsead
“Medical knowledge changes swiftly, and technological changes make new and expensive investigations and treatments possible that were only theoretical a few years ago. Life has been extended in length, but not in quality, and the debates about end?of?life decisions show us how much the notion of a “good life” is bound up with the absence of disease, illness and suffering.”
Find article here.

Scientists Battle In Court Over Lucrative Patents For Gene-Editing Tool

NPR, 5 December 2016
Author: Richard Harris
“A gene-editing technology called CRISPR-cas9 could be worth billions of dollars. But it’s not clear who owns the idea. U.S. patent judges will hear oral arguments to help untangle this issue, which has far more at stake than your garden-variety patent dispute. “This is arguably the biggest biotechnology breakthrough in the past 30 or 40 years, and controlling who owns the foundational intellectual property behind that is consequentially pretty important,” says Jacob Sherkow, a professor at the New York Law College.”
Find article here.

Introduction to the article collection ‘Translation in healthcare: ethical, legal, and social implications’

BMC Medical Ethics 2016 17:74
Authors: Michael Morrison, Donna Dickenson, Sandra Soo-Jin Lee
“New technologies are transforming and reconfiguring the boundaries between patients, research participants and consumers, between research and clinical practice, and between public and private domains. From personalised medicine to big data and social media, these platforms facilitate new kinds of interactions, challenge longstanding understandings of privacy and consent, and raise fundamental questions about how the translational patient pathway should be organised.”
Find article here.

I would have given anything to have a baby. But what does IVF really cost?

The Guardian, 30 November 2016
Author: Jessica Hepburn
“Reproductive science is big business but seems to be avoiding the ethical microscope. A study by Oxford University’s Centre for Evidence-Based Medicine into 27 such treatments has found that 26 have no good scientific proof of success. Some may even cause you harm. Professor Carl Heneghan, who oversaw the study, said it was one of the worst examples of healthcare practice he had ever seen in this country.”
Find article here.