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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

The female problem: how male bias in medical trials ruined women’s health – The Guardian (Gabrielle Jackson | November 2019)0

Posted by Admin in on November 14, 2019
 

Centuries of female exclusion has meant women’s diseases are often missed, misdiagnosed or remain a total mystery

From the earliest days of medicine, women have been considered inferior versions of men. In On the Generation of Animals, the Greek philosopher Aristotle characterised a female as a mutilated male, and this belief has persisted in western medical culture.

The historical, and continued, exclusion of women from clinical trials is a significant problem that really hasn’t been addressed by drives by granting bodies.  Similar exclusion tends to be the experience of people whose first language isn’t English, people living with a disability and First Nation peoples. Researchers and research ethics review bodies can play an important role in addressing this major problem.

“For much of documented history, women have been excluded from medical and science knowledge production, so essentially we’ve ended up with a healthcare system, among other things in society, that has been made by men for men,” Dr Kate Young, a public health researcher at Monash University in Australia, tells me.
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Young’s research has uncovered how doctors fill knowledge gaps with hysteria narratives. This is particularly prevalent when women keep returning to the doctor, stubbornly refusing to be saved.
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“The historical hysteria discourse was most often endorsed when discussing ‘difficult’ women, referring to those for whom treatment was not helpful or who held a perception of their disease alternative to their clinician,” Young wrote in a research paper published in the journal Feminism & Psychology.

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We’re Incentivizing Bad Science – Scientific American (James Zimring | October 2019)0

Posted by Admin in on November 11, 2019
 

Current research trends resemble the early 21st century’s financial bubble

Whatever you might want to say about humans, our behavior is profoundly affected by the incentive structures we encounter. Imagine what might happen if banks that issued home loans no longer made money off the interest, but rather made money by blending the loans into investment bonds that they then sold to investors. There are a limited number of people fortunate enough to afford a home. Once all those people had mortgages, the banks would then become a mortgage-backed–security factory that had run out of raw materials to make its product.

The banks could simply stop making money—or they could start making loans to anyone who applied, regardless of people’s ability to pay. After all, once the loans were sold to investors, the risk was no longer the bank’s. Of course, the rating agencies are designed to alert us to risk, but they get paid to do so by the banks, and angering your only customer base is not good business. Prior to 2008, without the intention of doing so, the system had evolved such that the bankers were specifically incentivized to inflate a massive bubble in the economy, built upon bad loans and unsustainable debt, and make a fortune doing it at no risk to themselves—and this is precisely what they did.

So, let’s imagine what might happen if the rules of professional science evolved such that scientists were incentivized to publish as many papers as they could and if those who published many papers of poor scientific rigor were rewarded over those who published fewer papers of higher rigor? What would happen if scientists weren’t rewarded for the long-term reproducibility and rigor of their findings, but rather became a factory that produced and published highly exciting and innovative new discoveries, and then other scientists and companies spent resources on the follow up studies and took all the risk?

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Ethical research — the long and bumpy road from shirked to shared – Nature (Sarah Franklin | October 2019)0

Posted by Admin in on November 10, 2019
 

From all too scarce, to professionalized, the ethics of research is now everybody’s business, argues Sarah Franklin in the sixth essay in a series on how the past 150 years have shaped science, marking Nature’s anniversary.

In the autumn of 1869, Charles Darwin was hard at work revising the fifth edition of On The Origin of Species and drafting his next book, The Descent of Man, to be published in 1871. As he finished chapters, Darwin sent them to his daughter, Henrietta, to edit — hoping she could help to head off the hostile responses to his debut, including objections to the implication that morality and ethics could have no basis in nature, because nature had no purpose.

That same year, Darwin’s cousin Francis Galton published Hereditary Genius, a book that recast natural selection as a question of social planning1. Galton argued that human abilities were differentially inherited, and introduced a statistical methodology to aid “improvement of the race”. Later, he coined the term ‘eugenics’ to advocate selective reproduction through application of the breeder’s guiding hand.

Darwin’s transformative theory inspired modern biology; Galton’s attempt to equate selection and social reform spawned eugenics. The ethical dilemmas engendered by these two late-nineteenth-century visions of biological control proliferate still. And, as older quandaries die out, they are replaced by more vigorous descendants. That there has never been a border between ethics and biology remains as apparent today as it was 150 years ago. The difference is that many of the issues, such as the remodelling of future generations or the surveillance of personal data, have become as everyday as they are vast in their implications. To work out how to move forward, it is worth looking at how we got here.

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Highlight negative results to improve science – Nature (Devang Mehta | October 2019)0

Posted by Admin in on November 10, 2019
 

Publishers, reviewers and other members of the scientific community must fight science’s preference for positive results — for the benefit of all, says Devang Mehta.

Near the end of April, my colleagues and I published an unusual scientific paper — one reporting a failed experiment — in Genome Biology. Publishing my work in a well-regarded peer-reviewed journal should’ve been a joyous, celebratory event for a newly minted PhD holder like me. Instead, trying to navigate through three other journals and countless revisions before finding it a home at Genome Biology has revealed to me one of the worst aspects of science today: its toxic definitions of ‘success’.

Our work started as an attempt to use the much-hyped CRISPR gene-editing tool to make cassava (Manihot esculenta) resistant to an incredibly damaging viral disease, cassava mosaic disease. (Cassava is a tropical root crop that is a staple food for almost one billion people.) However, despite previous reports that CRISPR could provide viral immunity to plants by disrupting viral DNA, our experiments consistently showed the opposite result.

In fact, our paper also showed that using CRISPR as an ‘immune system’ in plants probably led to the evolution of viruses that were more resistant to CRISPR. And although this result was scientifically interesting, it wasn’t the ‘positive’ result that applied scientists like me are taught to value. I had set off on my PhD trying to engineer plants to be resistant to viral diseases, and instead, four years later, I had good news for only the virus.

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