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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

How to organize a conference that’s open to everyone – Nature (Nic Fleming | July 2019)0

Posted by Admin in on August 17, 2019

Thinking about the needs of all participants is key to a successful event.

Having enjoyed their meal in a neo-Gothic, wood-panelled grand hall, most delegates were on their way to the afternoon sessions. Meanwhile, Caroline Miles had just spent 20 minutes sitting in her wheelchair looking at the back of the delivery van blocking her path to both the talk and the lunch.

The simple strategies described in this piece speak not only to respect and justice in our endeavours, failing to be inclusive can significantly limit the relevance and impact of our work.  Gary has been compiling anecdotes from the field that would make you cry with laughter, or just cry.

Miles, a solicitor turned independent-researcher specializing in legal issues relating to social care, describes her attendance at the Socio-Legal Studies Association (SLSA) annual meeting at the University of Bristol, UK, last March as “demeaning and embarrassing and just horrible”. The talks took place across two buildings, and the lifts were frequently filled with participants who could have used nearby stairs. Her access was blocked by delivery vehicles on two occasions. When this made her late, sessions had to be interrupted as tables and chairs were rearranged to fit her in. Miles was provided with a dedicated support worker by the university, but says that networking took place in standing spaces that had no chairs at her level, and that access to disabled toilets was blocked by participants having refreshments.
As Miles waited for someone to find the driver of the delivery vehicle blocking her way into the main meeting venue for the second time, she finally gave up. “I burst into tears and said, ‘That’s it, I’m going home’.”

Read the rest of this discussion piece

Incorporating Exclusion Clauses into Informed Consent for Biobanking (Papers: Zubin Master and David B. Resnik)0

Posted by Admin in on August 7, 2019

Determining how best to obtain valid consent for the use of human biological samples collected for research is a challenging issue for investigators, sponsors, and institutional review boards (IRBs) because the goals of maximizing participants’ autonomous decisionmaking and advancing scientific research may conflict. Some participants want control over their samples to avoid research projects that they find morally objectionable. In this article, we argue that the use of exclusion clauses in informed consent can minimize risks to participants and social groups and promote accountability and trust without significantly deterring research.

Exclusion clauses are written statements used during informed consent to (1) exclude the use of biological samples and personal health information for certain types of research and (2) limit sharing of biological samples and personal health information with specific researchers, biobanks, or organizations—for example, investigators working on certain types of research projects, insurance companies, government or law enforcement agencies, advocacy organizations, and private companies, that is, employers. Exclusion clauses are meant to capture contentious research that could risk discrimination or stigmatization of individuals or groups and sharing with organizations the public perceives as less trustworthy. Exclusion clauses are statements included in consent forms by the researchers on areas of contentious research in which they will not take part in the future and organizations they are unlikely to share with. Although exclusion clauses may limit unrestricted use and global sharing, they can be useful for smaller biobanks with specific purposes.

Biobanking and Informed Consent
Biobanking involves the collection of human biological materials and health information that are used for a current study and stored for future research. Samples can be tested to detect the presence of cell types, proteins, metabolites, antibodies, DNA sequences, and other biomarkers in a given population.1 With the accompanying health information of participants, investigators can analyze data derived from biological samples (such as genomic information), as well as other types of data (such as demographic and health information), to discover statistical relationships between various factors and diseases and patterns of heritability within families and populations. Sharing of biological samples is important for promoting scientific progress, because investigators can take advantage of one another’s labor and resources and can access diverse populations and include more samples in their studies. Sometimes, samples come from populations where individuals are thought to have unique genetic predispositions or environmental exposures.

MASTER, Z., & RESNIK, D. (2013). Incorporating Exclusion Clauses into Informed Consent for Biobanking. Cambridge Quarterly of Healthcare Ethics, 22(2), 203-212. doi:10.1017/S0963180112000576

6th World Conference on Research Integrity0

Posted by Admin in on July 29, 2019

Videos and powerpoints now available online from 6th WCRI: Post-conference updates

On the use of blockchain-based mechanisms to tackle academic misconduct (Vijay Mohan | June 2019)0

Posted by Admin in on July 18, 2019


  • There exists a Prisoners’ Dilemma in academia, where researchers engage in misconduct in equilibrium.
  • Conventional “centralized” solutions under the current system may not work.
  • New advances in distributed ledger technology, like blockchain, provide a decentralized alternative.
  • The incentive structures in academia may necessitate a solution involving a permissioned blockchain.
  • Open Science is necessary to fight misconduct.

Current incentives for publishing in academic journals result in a “winner-take-all” contest-like situation, with significant benefits for publishing research in quality journals. At the same time, empirically, we observe a greater incidence of research misconduct. The purpose of this paper is to summarize the nature and extent of the misconduct problem, to show why it may persist in the absence of conscious remedial action, and to discuss solutions that help lower the likelihood of spurious research escaping undetected. A simple model is constructed to emphasize that there exists the potential for a Prisoners’ Dilemma in academia, where scholars engage in misconduct at equilibrium (the Academic Dilemma). The paper then examines why conventional “centralized” regulatory solutions under the current system are not likely to succeed in resolving the problem, analyzes the properties of a decentralized solution utilizing blockchains, and argues that once incentive structures in academia are factored in, a permissioned blockchain may emerge as an effective middle-ground solution for mitigating scientific misconduct. In doing so, the paper highlights the importance of new technologies and recent advancements in Open Science for battling misconduct, and takes stock of the evolving nature of academic publishing.

Academic misconduct, Prisoners’ dilemma, Blockchain, Open science, Decentralized cooperation

Mohan, V. (2019) On the use of blockchain-based mechanisms to tackle academic misconduct. Research Policy. 48(9), November 2019, 103805