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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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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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What fake science journals may do to your health – Ottawa Citizen (Tom Spears | October 2019)0

Posted by Admin in on October 27, 2019
 

Kelly Cobey studies the shadowy world of scammers who publish fraudulent medical journals, but a few years back her professional field took a personal turn.

What fake science journals may do to your health – Ottawa Citizen (Tom Spears | October 2019) | The fact the public may not be able to recognise predatory publications may lead to them believing incorrect health advice and them demanding unproven treatments. This could undermine public confidence in research lead to hazardous outcomes. We have observed New Zealand some Australian researchers who are willing to publish in any publication just to get the scorecard up for grant applications. Members of the AHRECS team serve on grants and fellowship committees. Recently we’ve started to see papers and conference abstracts that had been published in several predatory journals/conferences.
A colleague’s mother had cancer. Medical treatment failed to stop it, so the woman turned to an alternative practitioner who advised her to have vitamin infusions, backed up by a published study that promoted this treatment.
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But there was a problem: The study was published by an Indian company that specializes in publishing groundless or substandard science studies. This is a scam that helps under-qualified scientists pretend they are doing real research, paying these “predatory” journals to advance their careers. (The company in question was later fined $50 million by the U.S. Federal Trade Commission for a pattern of deceptive practices.)
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The vitamin study was worthless, and all it did was give false hope to a woman who was very sick. As well, Cobey said, “she may have changed her care plan as a result of what she was given.”
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Cobey, a researcher at the Ottawa Hospital Research Institute, is giving a public lecture Thursday on the dangers of predatory science journals, especially in her field of health. It’s free, and can also be seen live online.
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Why research ethics should add retrospective review (Papers: Angus Dawson, et al | October 2019)0

Posted by Admin in on October 26, 2019
 

Abstract
Research ethics is an integral part of research, especially that involving human subjects. However, concerns have been expressed that research ethics has come to be seen as a procedural concern focused on a few well-established ethical issues that researchers need to address to obtain ethical approval to begin their research. While such prospective review of research is important, we argue that it is not sufficient to address all aspects of research ethics. We propose retrospective review as an important complement to prospective review. We offer two arguments to support our claim that prospective review is insufficient. First, as currently practiced, research ethics has become for some a ‘tick box’ exercise to get over the ‘hurdle’ of ethics approval. This fails to capture much of what is important in ethics and does not promote careful reflection on the ethical issues involved. Second, the current approach tends to be rules-based and we argue that research ethics should go beyond this to develop people’s capacity to be sensitive to the relevant moral features of their research, their ethical decision-making skills and their integrity. Retrospective review of a project’s ethical issues, and how they were addressed, could help to achieve those aims better. We believe that a broad range of stakeholders should be involved in such retrospective review, including representatives of ethics committees, participating communities and those involved in the research. All stakeholders could then learn from others’ perspectives and experiences. An open and transparent assessment of research could help to promote trust and understanding between stakeholders, as well as identifying areas of agreement and disagreement and how these can be built upon or addressed. Retrospective review also has the potential to promote critical reflection on ethics and help to develop ethical sensitivity and integrity within the research team. Demonstrating this would take empirical evidence and we suggest that any such initiatives should be accompanied by research into their effectiveness. Our article concludes with a discussion of some possible objections to our proposal, and an invitation to further debate and discussion.

Dawson, A., Lignou, S., Siriwardhana, C. and O’Mathúna, D.P. (2019) Why research ethics should add retrospective review. BMC Medical Ethics 20: 68
Publisher (Open Access): https://bmcmedethics.biomedcentral.com/articles/10.1186/s12910-019-0399-1

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