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The Ethics of Social Research with Children and Families in Young Lives: Practical Experiences (Book: Virginia Morrow | 2009)0

Posted by Admin in on May 19, 2019
 

Preview
A great deal of attention is now paid to the ethics of social research. Research governance has expanded, and a burgeoning literature is emerging that describes the processes, practices and questions that arise in social research with children, families and communities. This paper outlines the approach taken to research ethics within Young Lives, a long-term study of childhood poverty in four developing countries. It describes some of the practical difficulties that Young Lives faces, and emphasises the importance of understanding local contexts in undertaking research with children and families in environments that are dynamic and may change rapidly from one year to the next, economically, environmentally and politically. The paper aims to contribute to current debates about research practices, the ethics of longitudinal research with children and research with communities in majority world contexts, in the spirit of shared enquiry and learning.

Morrow, Virginia (2012) ‘ The Ethics of Social Research with Children and Families in Young Lives: Practical Experiences’, in Jo Boyden and Michael Bourdillon (eds) Childhood Poverty. Multidisciplinary Approaches (pp.24-42). Basingstoke: Palgrave Macmilllan.
Book (Amazon): https://www.amazon.co.uk/Childhood-Poverty-Multidisciplinary-Approaches-Development/dp/0230319246
As a working paper: http://www.younglives.org.uk/sites/www.younglives.org.uk/files/YL-WP53-Morrow-EthicsOfResearchWithChildren.pdf

China tightens its regulation of some human gene editing, labeling it ‘high-risk’ – Science (Dennis Normile | February 2019)0

Posted by Admin in on May 19, 2019
 

In the wake of the shocking news that one of its scientists had produced genetically altered babies, the Chinese government this week issued draft regulations that would require national approval for clinical research involving gene editing and other “high-risk biomedical technologies.” Although some Chinese researchers welcome the move to tighten oversight, there are worries that the rules could impose a burden on areas of genetic research that are not so controversial.

“I am happy to see the national regulations regarding new biomedical technologies; I think this makes relevant policy more clear,” says Wei Jia, a medical oncologist who is involved with an ongoing trial using gene editing to modify cancer patient T-cells at the Affiliated Nanjing Drum Tower Hospital of Nanjing University Medical School in China.

The regulations are in response to the late November 2018 claim by He Jiankui, then of Southern University of Science and Technology in Shenzhen, China, that he had altered the DNA embryos in a way that would give the babies and their descendants resistance to HIV. This approach is called germline engineering—it can involve changing DNA in embryos or sperm or eggs—and is banned in many countries, by law or regulation. He’s effort, using a technique called CRISPR, resulted in twin girls born last fall; one more baby, he said, is on the way. The experiment earned He worldwide condemnation for prematurely using a still glitchy technique that might negatively affect the babies’ development and health in a medically unnecessary and unjustified intervention.

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Trump’s science adviser on research ethics, immigration and presidential tweets – Science (Sara Reardon | April 2019)0

Posted by Admin in on May 18, 2019
 

Five months into the job, Kelvin Droegemeier tells Nature what it’s like to work with the US president.

When meteorologist Kelvin Droegemeier was sworn in as director of the White House Office of Science and Technology Policy (OSTP) in February, he inherited an office that had been without a leader for two years — and became the top science adviser to President Donald Trump.

Trump’s push to cut government spending on research, and his policies on issues such as immigration, have caused controversy in science. Nature spoke to Droegemeier in mid-April — two months into his tenure — about these policies, his plans and what it’s like to work with the president. The interview has been edited for length and clarity.

The number of OSTP staff dropped precipitously during Trump’s first two years in office. What is the situation now?

The lights were definitely on, and there was a lot of work actually getting done. We have people cycle through. Some of them are on detail for a year, so there’s kind of a constant refresh. I have brought additional people on board in some of the areas that I’m going to be working on a little bit more.

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Prominent UCSD eye doctor ‘on leave’ after inewsource investigation – inewsource (Jill Castellano & Brad Racino | April 2019)0

Posted by Admin in on May 14, 2019
 

Dr. Kang Zhang, chief of eye genetics at the University of California San Diego, is “on leave” after an inewsource investigation exposed how the doctor put medical research subjects in harm’s way for years while pulling in millions of federal dollars for the institution.

This case demonstrates why an institution’s monitoring arrangements need to escalate consistent nonadherence and include random audits

In a new development, inewsource obtained an inspection report from the U.S. Food and Drug Administration that detailed more problems with one of Zhang’s studies. The report, compiled in 2016, described one incident in which Zhang poked a hole in a study participant’s eye with a needle, causing a cataract that had to be fixed with surgery.
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The person wasn’t supposed to be enrolled in the study, according to the report, and the injury allegedly occurred because Zhang was in a hurry to take a trip to China.
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