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

Resource Library

Research Ethics MonthlyAbout Us

ResourcesGenetics

Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

China approves ethics advisory group after CRISPR-babies scandal – Nature (Hepeng Jia | August 2019)0

Posted by Admin in on August 10, 2019
 

Bioethicists hope a national committee will help close loopholes in the country’s biomedical ethics regulations.

China will establish a national committee to advise the government on research-ethics regulations. The decision comes less than a year after a Chinese scientist sparked an international outcry over claims that he had created the world’s first genome-edited babies.

The country’s most powerful policymaking body, the Central Comprehensively Deepening Reforms Commission of the ruling Chinese Communist Party, headed by President Xi Jinping, approved at the end of last month a plan to form the committee. According to Chinese media, it will strengthen the coordination and implementation of a comprehensive and consistent system of ethics governance for science and technology.

The government has released few details on how the committee will work. But Qiu Renzong, a bioethicist at the Chinese Academy of Social Science in Beijing, says it could help to reduce the fragmentation in biomedical ethics regulations across ministries, identifying loopholes in the enforcement of regulations and advise the government on appropriate punishments for those who violate the rules.

Read the rest of this news story

A Russian Biologist Wants To Create More Gene-Edited Babies – NPR (Rob Stein | June 2019)0

Posted by Admin in on July 20, 2019
 

A Russian scientist says he wants to create more genetically modified babies, flouting international objections that such a step would be premature, unethical and irresponsible.

Denis Rebrikov, a molecular biologist who heads a gene-editing lab at the Kulakov National Medical Research Center for Obstetrics, Gynecology and Perinatology in Moscow, claims he has developed a safe — and therefore acceptable — way to create gene-edited babies.

“How it can be unethical if we will make [a] healthy baby instead of diseased?” Rebrikov told NPR during his first broadcast interview. “Why? Why [is it] unethical?”

Read the rest of this discussion piece

Alarmed by new ‘CRISPR babies’ plan, top science figures say they’re powerless to stop it – STAT (Rick Berke | June 2019)0

Posted by Admin in on July 19, 2019
 

ASPEN, Colo. — Two influential leaders in science for the first time publicly condemned a Russian biologist who said he plans to produce gene-edited babies but conceded that it was beyond their organizations’ authority to halt him from doing so.

In separate interviews with STAT over the weekend, Margaret Hamburg, co-chair of an international advisory committee on human genome-editing, and Victor Dzau, president of the U.S. National Academy of Medicine, said they were deeply concerned by the plans outlined by Russian scientist Denis Rebrikov.

Still, said Hamburg, “I don’t know where we get the teeth to do some of what may ultimately need to be done’’ to respond in such situations.

Read the rest of this discussion piece

(US) Rounding up the Belmont Report Retrospectives – Amp@sand (May 2019)0

Posted by Admin in on June 27, 2019
 

Last month brought the 40th anniversary of the publishing of the Belmont Report, and along with that milestone came a reflection on how its values, conclusions, and imperatives have changed in the intervening years. A celebration of its durability has been accompanied by a necessary reckoning with the ways that a 40-year-old document may be ill-equipped to process the ethical issues brought about by technological, cultural, and political changes. Here, we’ve gathered a range of resources that look back on 40 years of the Belmont Report.

Safeguards for human studies can’t cope with big data
Nature
This provocative piece explores the ways in which the Belmont Report is insufficient for dealing with revolutionary digital technologies, arguing that “data science overlooks risks to human participants by default” and that it is “past time for a Belmont 2.0.” That new summit, the author argues, would need to engage with the currently “poorly understood risks and harms” that big data researches poses to humans.

A Belmont Report for Health Data (abstract available)
The New England Journal of Medicine
HIPAA offers robust protection of a limited range of data, but in 2019, the demands on humans’ health data come from far more directions than the 1996 legislation could anticipate. The authors of this NEJM piece call for a coordinated expansion of the scope of ethical review of the gathering, use, and manipulation of health data to account for sources such as “social-media platforms, health and wellness apps, smartphones [and] life insurers,” citing concerns about reidentification of deidentified data, discrimination, health profiling, and more.

Read the rest of this discussion piece

0