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Children in Social Research: Do Higher Payments Encourage Participation in Riskier Studies? (Stephanie Taplin, et al | February 2019)0

Posted by Admin in on February 18, 2019
 

Abstract

Full disclosure, columns on the advisory panel for this work, But this is a great paper with disciplinary application.

The MESSI (Managing Ethical Studies on Sensitive Issues) study used hypothetical scenarios, presented via a brief online survey, to explore whether payment amounts influenced Australian children and young people to participate in social research of different sensitivity. They were more likely to participate in the lower sensitivity study than in the higher at all payment levels (A$200 prize draw, no payment, $30, or $100). Offering payments to children and young people increased the likelihood that they would agree to participate in the studies and, in general, the higher the payments, the higher the likelihood of their participating. No evidence of undue influence was detected: payments can be used to increase the participation of children and young people in research without concerns of undue influence on their behavior in the face of relatively risky research. When considering the level of payment, however, the overriding consideration should be the level of risk to the children and young people.
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Keywords
children and adolescent, pediatrics, justice, participant selection, inclusion, recruitment, payment for research participation, research ethics, risks, benefits, and burdens of research, beneficence and nonmaleficence, vignette studies, decision-making capacity, surrogate decision makers, parental consent, child assent, voluntariness, coercion
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Taplin, S., Chalmers, J., Hoban, B., McArthur, M., Moore, T. and Graham, A. (2019) Research Ethics Committees’ Oversight of Biomedical Research in South Africa: A Thematic Analysis of Ethical Issues Raised During Ethics Review of Non-Expedited Protocols. Journal of Empirical Research on Human Research Ethics.
Publisher:

Whose hearts, livers and lungs are transplanted in China? Origins must be clear in human organ research – The Conversation (Wendy Rogers and Matthew Robertson | February 2019)0

Posted by Admin in on February 14, 2019
 

Scientist He Jiankui’s claimed use of the genetic tool CRISPR to edit the genomes of twin girls led to international condemnation. His actions have focused a spotlight on research ethics – and what the consequences should be when scientists “go rogue”.

The Chinese Academy of Science initially looked into He’s conduct, and a subsequent internal government investigation has allegedly identified multiple violations of state laws. He has now been fired by his university.


Read more: Tension as scientist at centre of CRISPR outrage speaks at genome editing summit


But beyond just this example, what does happen when scientists fail to comply with globally-accepted guidelines for ethical medical research? We examined this issue focusing on published research involving recipients of organ transplants performed in the People’s Republic of China.\

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Are scientists’ reactions to ‘CRISPR babies’ about ethics or self-governance? – STAT (Nina Frahm and Tess Doezema | January 2019)0

Posted by Admin in on February 12, 2019
 

It’s been two months since Chinese scientist He Jiankui shocked the world with the announcement that his lab had created the first genetically edited babies. Since then, much of the public furor surrounding the news has died down, even as He has been fired by the Southern University of Science and Technology. There is one important takeaway from the controversy that seems to have gone overlooked in the CRISPR ethics discussion: defining the ethics of editing human life should not be left to scientists alone.

The research community widely agreed that He and his colleagues crossed an ethical line with the first inheritable genetic modification of human beings. Gene-editing experts as well as bioethicists described the transgression as being conducted by a “rogue” individual. But when leading voices such as NIH Director Francis Collins assert that He’s work “represents a deeply disturbing willingness by Dr. He and his team to flout international ethical norms,” what are they actually expressing concern about? Who determines what are the ethics of altering human life?

We believe that the alarm being sounded by the scientific community isn’t really about ethics. It’s about protecting a particular form of scientific self-governance, which the “ethics” discourse supports. What are currently treated as matters of research ethics are in fact political and social questions of fundamental human importance.

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American scientist played more active role in ‘CRISPR babies’ project than previously known – STAT (Jane Qiu | January 2019)0

Posted by Admin in on February 11, 2019
 

BEIJING — An American scientist at Rice University was far more involved in the widely condemned “CRISPR babies” experiment than has previously been disclosed. Most notably, STAT has learned that Rice biophysicist Michael Deem was named as the senior author on a paper about the work that was submitted to Nature in late November.

Deem’s prominent authorship indicates that a respected American researcher played an instrumental role in the controversial project, which sparked a worldwide furor. His involvement could have encouraged volunteers to join the experiment and lent credibility to He Jiankui, the Chinese scientist who led the work.

Emails provided to STAT show that Deem was listed as the last author — which, in the life sciences, is typically reserved for the senior researcher who oversees a study. The paper, titled “Birth of twins after genome editing for HIV resistance,” has another nine contributors, including He as the first author, where the person who makes the most hands-on contribution is credited.

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