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)

International Association for the Study of Forced Migration (IASFM) Code of ethics: Critical reflections on research ethics in situations of forced migration0

Posted by Admin in on August 18, 2019
 

Context:
Research with people in situations of forced migration poses particular ethical challenges because of unequal power relations, legal precariousness, extreme poverty, violence, the criminalization of migration, politicized research contexts, the policy relevance of our research and/or dependence on government and non-governmental services and funding. However, Research Ethics Boards (REBs) are not always aware of these particular ethical issues; some countries and institutions do not have REBs; and some kinds of research are not subject to REB approval. In this context of heightened risks of research, and uneven institutional accountability for research ethics, the International Association for the Study of Forced Migration (IASFM) hereby proposes this code of ethics for research with people in situations of forced migration. Similarly to how Indigenous research methodologies incorporate a broad, engaged and critical notion of ethics that recognizes power differentiations and the agency of the participants within exploitive research histories, this document sets forth principles that are starting points for respectful research.1 It is intended to reflect the broad diversity of our membership, including those involved in gathering information – whether in an academic or community setting – as well as those who are asked to take part in research. That being said, we acknowledge that this is not a comprehensive nor exhaustive document, but rather a starting point for active, critical engagement with ethical issues.

Access the Code

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

Using ASCO’s Clinical Database for Commercial Research Raises Questions, Ethicists Say – Medscape (Ellie Kincaid | May 2019)0

Posted by Admin in on August 8, 2019
 

Eleven abstracts of the thousands accepted for publication at this year’s annual meeting of the American Society of Clinical Oncology (ASCO), one of the largest cancer research conferences in the world, draw upon data collected through a nonprofit subsidiary of ASCO that in 4 years has brought together the electronic health records (EHRs) of 1.2 million patients.

The ASCO subsidiary — CancerLinQ — will have its own 1200 square foot booth in prime real estate at the entrance to the meeting’s exhibit hall. It has received data from 48 healthcare institutions to help them improve care for patients and has compiled a treasure trove of data for researchers studying how expensive cancer drugs work for patients in the real world. But ethicists are concerned that CancerLinQ is allowing companies to sell access to the data after they have been stripped of patient identifiers, without asking for patients’ permission.

“I think that the ethics of profiting off of someone else’s information is dicey and at the very least the patient should go in with their eyes open, and that requires informing them,” said Robert Field, PhD, MPH, JD, a professor of law and public health at Drexel University, Philadelphia, Pennsylvania.

Read the rest of this discussion piece

Participants’ Understanding of Informed Consent for Biobanking: A Systematic Review (Papers: Elizabeth R. Eisenhauer, et al | 2017)0

Posted by Admin in on August 7, 2019
 

Abstract
Nurses are increasingly asked to obtain consent from participants for biobanking studies. Biobanking has added unique complexities to informed consent. The purpose of this systematic review was to evaluate participants’ level of understanding of the information presented during the informed consent process unique to the donation of biological specimens for research. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines were utilized to conduct the review. PubMed, EMBASE, CINAHL, PsycINFO, Scopus, Web of Science, and ProQuest bibliographic databases were searched. Results indicated that elements of informed consent unique to biobanking were poorly understood. Most studies had authors or funding associated with a biobank. Only one study disclosed and assessed participants’ understanding of moral risks. Increased disclosures, values-clarification, and presenting information via multiple modalities may facilitate understanding. There is a need to improve the quality of informed consent for biobanking studies by utilizing standardized instruments, definitions, and encouraging research about informed choice outside the biobanking industry.

Keywords
biological specimen banks, biobanking, informed consent, moral risks, understanding

Eisenhauer, E. R., Tait, A. R., Rieh, S., Y. & Arslanian-Engoren, C., M. (2017) Participants’ understanding of informed consent for biobanking: a systematic review. Clinical Nursing Research. 28(1) pp30-51
Publisher: https://journals.sagepub.com/doi/10.1177/1054773817722690

0