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23andMe, moving beyond consumer DNA tests, is building a clinical trial recruitment business – STAT (Rebecca Robbins | September 2019)0

Posted by Admin in on November 23, 2019
 

SAN FRANCISCO — Consumer genetics giant 23andMe announced Thursday that it would move deeper into the business of clinical trial recruitment, partnering with a fast-growing startup to help match its customers with nearby study sites based on their diseases, demographics, and DNA.

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This story touches on a tricky problem: The use for recruitment purposes of a service that people would have understood to be private and not for research purposes.

The Silicon Valley company has for months been quietly making inroads into clinical trial recruitment by emailing customers who’ve opted in with recommendations about studies that might be appropriate for them. It has recruited for studies, both interventional and observational, in disease areas including Alzheimer’s, Parkinson’s, attention-deficit hyperactivity disorder, eczema, and liver disease, a spokesperson for the company confirmed.
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But the new partnership with TrialSpark, which offers a tech-powered alternative to traditional contract research organizations, may help 23andMe address one of the biggest challenges in clinical trial recruitment: geography. The idea is that patients who want to enroll in a clinical trial centered out of, say, Memorial Sloan Kettering Cancer Center, won’t have to fly to New York and can instead participate by visiting their local doctor’s office.
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Involve (NIHR | Established 1996, latest news August 2019)0

Posted by Admin in on November 20, 2019
 

INVOLVE was established in 1996 and is part of, and funded by, the National Institute for Health Research, to support active public involvement in NHS, public health and social care research. It is one of the few government funded programmes of its kind in the world.

As a national advisory group our role is to bring together expertise, insight and experience in the field of public involvement in research, with the aim of advancing it as an essential part of the process by which research is identified, prioritised, designed, conducted and disseminated.

The Impact of public involvement in NIHR health and social care research is defined as:

“The changes, benefits and learning gained from the insights and experiences of patients, carers and the public when working in partnership with researchers and others involved in NIHR initiatives”

Supporting statement:
By public involvement we mean research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them as defined by NIHR INVOLVE.

Access the web site

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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Former GP Spurs 20+ Retractions Over Forced Transplants From Chinese Prisoners – Medspace (Diana Swift | October 2019)0

Posted by Admin in on October 29, 2019
 

In her second career as a bioethicist, a former general practitioner is reshaping the scientific literature of organ transplantation.

From 1983 to 2000, Wendy Rogers, BMBS, practiced primary care medicine in different settings in the United Kingdom and Australia. In the latter country, the single mother of two grew disillusioned with the fee-for-service system, so while she was pondering her future, she decided to change course, leaving practice to take a degree in English literature and philosophy that led to a doctorate in philosophy.

Medicine’s loss was medical ethics’ gain. Now a professor of clinical ethics at Macquarie University in Sydney, Australia, Rogers’ work to draw attention to scientific research that used organ transplants from executed prisoners in China have led to at least 20 retractions, and counting.

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