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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Disaster-zone research needs a code of conduct – Nature (JC Gaillard & Lori Peek | November 2019)0

Posted by Admin in on December 10, 2019
 

Study the effects of earthquakes, floods and other natural hazards with sensitivity to ethical dilemmas and power imbalances.

A magnitude-7.0 earthquake rocked Anchorage, Alaska, in late November 2018. Roads buckled and chimneys tumbled from rooftops. Business operations were disrupted. Schools were damaged across the district. This was the largest earthquake to shake the region in a generation, and there was much to learn. What was the state of the infrastructure? Might further quakes occur? How did people respond? Teams of scientists and engineers from across the United States mobilized to conduct field reconnaissance in partnership with local researchers and practitioners. These efforts were coordinated through the clearing house set up by the Earthquake Engineering Research Institute in Oakland, California, which provided daily in-person and online briefings, as well as a web portal for sharing data.

This discussion is especially relevant at the moment given the bushfires/megafires raging in Australia (and California) and the volcano eruption on White Island, New Zealand.  Our sincere best wishes and hopes to anyone affected by these awful disasters.

But researchers are not always so welcome in disaster zones. After the deadly Indian Ocean earthquake and tsunami on 26 December 2004, hundreds of academics from countries including Japan, Russia, France and the United States rushed to the region to collect perishable data. This influx of foreign scientists angered and fatigued some locals; many declined researchers’ requests for interviews. The former governor of Aceh province, Indonesia, where more than 128,000 people died, described foreign researchers as “guerrillas applying hit-and-run tactics”1. Yet research on tsunami propagation and people’s response to the event has led to improved warnings and emergency-response plans.
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When, on 28 September 2018, an earthquake and tsunami hit the Indonesian island of Sulawesi, dozens of researchers found themselves unable to enter the country2. Indonesian law now requires foreign scientists to obtain a special visa before they can begin research. Data-collection protocols must be submitted to the government in advance and projects must have an Indonesian partner. Violators could face criminal charges and even prison.
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Read the rest of this discussion piece

Friday afternoon’s funny – Santa and the future study coordinator0

Posted by Admin in on December 6, 2019
 

Cartoon by Don Mayne www.researchcartoons.com

Any similarity to study coordinators (whether real or fictional) is coincidental, but pretty darn spooky… you know who you are.

Disgraced tracheal transplant surgeon is handed 16 month prison sentence in Italy (Papers: Michael Day | November 2019)0

Posted by Admin in on December 5, 2019
 

Disgraced surgeon Paolo Macchiarini, who faked research relating to dangerous and largely discredited tracheal transplants, has been handed a 16 month prison sentence in Italy for forging documents and abuse of office.

Macchiarini made headlines around the world after claiming a major breakthrough for patients with failing windpipes, by “seeding” an artificial scaffold with a patient’s own stem cells, to generate a functioning trachea.

But excitement at the prospect of a genuine medical advance turned to scandal when it emerged that Macchiarini had falsified results and misled hospital authorities regarding the health of those receiving the experimental procedures. The revelation prompted his research centre, the Karolinska Institute, to eventually disown his …

Day, M. (2019) Disgraced tracheal transplant surgeon is handed 16 month prison sentence in Italy. BMJ. 367:l6676. doi: 10.1136/bmj.l6676. No abstract available. PMID: 31767600
Publisher: https://www.bmj.com/content/367/bmj.l6676

Participant understanding and recall of informed consent for induced pluripotent stem cell biobanking (Papers: Tristan McCaughey, et al | 2016)0

Posted by Admin in on December 1, 2019
 

Abstract
The ability to generate human induced pluripotent stem cells (iPSCs) has opened new avenues for human disease modelling and therapy. The aim of our study was to determine research participants’ understanding of the information given when donating skin biopsies for the generation of patient-specific iPSCs. A customised 35-item questionnaire based on previous iPSC consent guidelines was sent to participants who had previously donated samples for iPSC research. The questionnaire asked pertinent demographic details, participants’ motivation to take part in iPSC research and their attitudes towards related ethical issues. 234 participants were contacted with 141 (60.3 %) complete responses received. The median duration between recruitment and follow-up questioning was 313 days (range 10–573 days). The majority of participants (n = 129, 91.5 %) believed they understood what a stem cell was; however, only 22 (16.1 %) correctly answered questions related to basic stem cell properties. We found no statistically significant difference in responses from participants with different levels of education, or those with a health sciences background. The poor understanding amongst participants of iPSC research is unlikely to be unique to our study and may impact future research if not improved. As such, there is a need to develop an easily understood yet comprehensive consent process to ensure ongoing ethical progress of iPSC biobanking.

Keywords
Stem cell, Informed consent, HeLa, Biobank

McCaughey T., Chen C.Y., De Smit E., Rees G., Fenwick E., Kearns L.S., Mackey D.A., MacGregor C., Munsie M., Cook A.L., Pébay A. & Hewitt A.W. (2016) Participant understanding and recall of informed consent for induced pluripotent stem cell biobanking. Cell and Tissue Banking. 17: 449. https://doi.org/10.1007/s10561-016-9563-8
Publisher: https://link.springer.com/article/10.1007%2Fs10561-016-9563-8

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