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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

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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Claim of CRISPR’d baby girls stuns genome editing summit – STAT (Sharon Begley | November 2018)0

Posted by Admin in on February 12, 2019
 

HONG KONG — A Chinese scientist’s claim that he used the genome editing technology CRISPR-Cas9 to alter the DNA of human embryos, resulting in the birth a few weeks ago of twin girls, stunned organizers of the Second International Summit on Human Genome Editing, leaving them scrambling to evaluate the claim two days before the scientist is scheduled to speak at the meeting.

“I don’t know the details” of the claim by He Jiankui, said David Baltimore of the California Institute of Technology, chairman of the organizing committee of the summit, which begins on Tuesday in Hong Kong. “We don’t know what will be said” when He speaks at a session on human embryo editing.

The summit’s organizing committee issued a statement Monday saying they had only just learned of He’s research in Shenzhen, China. “Whether the clinical protocols that resulted in the births in China conformed with the guidance” of leading scientific bodies for conducting clinical trials of heritable genome editing “remains to be determined,” the statement said. “We hope that the dialogue at our summit further advances the world’s understanding of the issues surrounding human genome editing. Our goal is to help ensure that human genome editing research be pursued responsibly, for the benefit of all society.”

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Wake-up call from Hong Kong – Science (Victor J. Dzau, et al | December 2018)0

Posted by Admin in on February 12, 2019
 

The Second International Summit on Human Genome Editing, held in Hong Kong last month, was rocked by the revelation from a researcher from Shenzhen that twins were born whose healthy embryonic genomes had been edited to confer resistance to HIV. Despite widespread condemnation by the summit organizing committee, world scientific academies, and prominent scientific leaders that such research was “deeply disturbing” and “irresponsible,” and the launch of an investigation in China into the researcher’s actions, it is apparent that the ability to use CRISPR-Cas9 to edit the human genome has outpaced nascent efforts by the scientific and medical communities to confront the complex ethical and governance issues that they raise. The current guidelines and principles on human germline genome editing are based on sound scientific and ethical principles. However, this case highlights the urgent need to accelerate efforts to reach international agreement upon more specific criteria and standards that have to be met before human germline editing would be deemed permissible.

“We need…broad agreement on…criteria for human germline genome editing research…”

Together, we call upon international academies to quickly convene international experts and stakeholders to produce an expedited report that will inform the development of these criteria and standards to which all genome editing in human embryos for reproductive purposes must conform, and to engage scientific bodies around the world in this effort. The United States National Academies are willing to lead in this endeavor. Academies are well-positioned to convene needed international expertise and to help foster broad scientific consensus on the responsible pursuit of human genome editing research and clinical applications. We strongly believe that international consensus on such standards is important to avoid the potential for researchers to rationalize the justification or seek out convenient locales for conducting dangerous and unethical experimentation. The establishment of international scientific standards is not intended to substitute for national regulation but could inform such regulation.

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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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