ACN - 101321555 Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Resource Library

Research Ethics MonthlyAbout Us

ResourcesHuman research ethics

Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

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.

Read the rest of this discussion piece

Remains of dissected Nazi prisoners to be laid to rest in Berlin – The Guardian (Philip Oltermann | May 2019)0

Posted by Admin in on May 16, 2019
 

Microscopic tissue samples, kept by controversial anatomist, were found in 2016

The microscopic remains of political prisoners executed by the Nazis and dissected by a controversial anatomist are to be buried in Berlin on Monday, more than seven decades after the end of the second world war.

About 300 tissue samples, each one no more than a hundredth of a millimetre thin and one square centimetre in size, were discovered in 2016 by descendants of Hermann Stieve, a former director of the Berlin Institute of Anatomy who specialised in research into the female reproductive system.

Though Stieve was not a member of the Nazi party, he developed a relationship with the regime whereby he was allowed to do research on recently executed political prisoners in return for helping to obliterate any traces of their remains.

Read the rest of this news story

Aboriginal genome analysis comes to grips with ethics – Nature (Ewen Callaway | September 2011)0

Posted by Admin in on May 12, 2019
 

Sequencing effort provides a model for future studies of museum samples.

En route from Sydney to Perth, Australia, in the early 1920s, British ethnologist Alfred Cort Haddon acquired a tuft of human hair from a young Aboriginal man. He added it to his sizeable collection of hair from people living around the world.

Ninety years later, those locks have yielded the first complete genome sequence of an Aboriginal Australian, and provided clues about the timing of human migrations from Africa to Asia1 (see ‘Early human explorers charted a bold course’). The work has also underscored the bioethical dilemmas involved in plumbing the genomes of indigenous populations — especially when the DNA comes from an archived specimen such as Haddon’s. “To be sequencing DNA from the hair of a deceased indigenous person is uncharted ethical territory,” says Emma Kowal, a cultural anthropologist at the University of Melbourne.

The genome project, led by Eske Willerslev at the University of Copenhagen, received approval for the work from a group that represents Aboriginals in the region in which the man probably lived. But some scientists are jittery about how others in the Aboriginal community might receive the project, and worry that it could set back efforts to engage Aboriginals in genetic research. “In a sense, every Aboriginal Australian has had something about themselves revealed to the world without their consent,” says Hank Greely, who directs the Center for Law and the Biosciences at Stanford University in California.

Read the rest of this discussion piece

0