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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Scientists are just as confused about the ethics of big-data research as you – Wired Magazine (Sarah Zhang 2016)0

Posted by Admin in on May 21, 2016
 

WHEN A ROGUE researcher last week released 70,000 OkCupid profiles, complete with usernames and sexual preferences, people were pissed. When Facebook researchers manipulated stories appearing in Newsfeeds for a mood contagion study in 2014, people were really pissed. OkCupid filed a copyright claim to take down the dataset; the journal that published Facebook’s study issued an “expression of concern.” Outrage has a way of shaping ethical boundaries. We learn from mistakes.

Shockingly, though, the researchers behind both of those big data blowups never anticipated public outrage. (The OkCupid research does not seem to have gone through any kind of ethical review process, and a Cornell ethics review board approved the Facebook experiment.) And that shows just how untested the ethics of this new field of research is. Unlike medical research, which has been shaped by decades of clinical trials, the risks—and rewards—of analyzing big, semi-public databases are just beginning to become clear.

Read the full news story

Also see
1. (25/03/14) Experimental evidence of massive-scale emotional contagion through social networks
2. (01/04/14) Facebook fiasco: was Cornell’s study of ‘emotional contagion’ an ethics breach? 
3. (10/05/15) Social media personhood as a challenge to research ethics: Exploring the case of the Facebook experiment
4. (10/05/15) Untangling research and practice: What Facebook’s “emotional contagion” study teaches us
5. (20/05/16) Scientists are just as confused about the ethics of big-data research as you
6. (17/06/16) Are Research Ethics Obsolete In The Era Of Big Data?

New Australian retraction reported on Retraction Watch – Dairy journal retracts paper lacking co-authors’ consent (Dalmeet Singh Chawla May 2016)0

Posted by Admin in on May 16, 2016
 

A journal about dairy science has retracted a paper after learning that it was published without the consent of all its authors.

An independent inquiry found no evidence of research misconduct, but nevertheless recommended that the institution — Curtin University in Perth, Australia – request to retract the paper.

Read the full news story here

Clarifying ethical responsibilities in paediatric biobanking (Papers Merle Spriggs & Craig L. Fry)0

Posted by Admin in on May 11, 2016
 

ABSTRACT

Background: The creation of biobanks for storage of human specimens and use in health and medical research is expanding globally. Biobanks hold significant potential to facilitate such research. However, important ethical questions arise, particularly in the pediatric setting, in relation to consent, future use, and the balance of benefits against potential harms. To date, these ethical issues have been undertheorized and under-researched in the biobanks domain. The aim of this study was to examine stakeholder attitudes regarding the ethical responsibilities of researchers, biobank custodians, Human Research Ethics Committees (HRECs), research institutions, and parents.

Methods: A qualitative study using semistructured interviews with a purposive sample of key informants (n = 14) with relevant expertise was conducted. Participants were interviewed about their pediatric biobank experiences, the main ethical issues observed as an HREC member, researcher, or custodian, and future needs.

Results: Participants expressed concerns about consent processes in the biobanking context, including issues regarding the provision of information, level of understanding, voluntariness, and the point at which children have a role or can consent for themselves. Other major issues raised were biobank quality management, the return of results, and the idea of human tissue as a scarce precious resource. Key informants also highlighted uncertainties about the custodianship of biobank samples and reasonable limits on the custodian’s role.

Conclusions: Pediatric biobanks are a valuable resource, presenting unique opportunities to advance children’s health and well-being. Properly run pediatric biobanks entail responsibilities for institutes, custodians, researchers, and research ethics committees. We discuss ethical implications for pediatric biobank policy and practices, as well as future information needs in light of the study findings.

Spriggs, M. & Fry, C. (2015). Clarifying ethical responsibilities in paediatric biobanking. AJOB Empirical Bioethics DOI:10.1080/23294515.2015.1049718
http://www.tandfonline.com/eprint/QDVEzAwZsTqT9QkwvBjB/full xxxx

African Journal of Science, Technology, Innovation and Development (Emmanuel M. Akpabio & Idorenyin F. Esikot 2014)0

Posted by Admin in on April 29, 2016
 

Abstract: This study seeks to show how social science-related disciplines in Nigerian universities understand and incorporate ethical principles in research settings within the framework of general institutional practices. We used the University of Uyo, Nigeria, to specifically and empirically explore these issues among academic staff and postgraduate students. We used in-depth discussions and interviews, in addition to analysis of secondary record to collect necessary data. Findings show that individual ethical knowledge and consideration in a research setting is not optimal. At institutional level, ethical principles and norms are only weakly observed in teaching and administrative settings and hardly internalised in research settings. A lack of institutional capacity to evolve functional mechanisms for ethical discipline was observed and blamed on the society-wide poor commitment to moral values and the development of the education system in Nigeria. Given the exploratory nature of the study, there is need for more research.”

Keywords: social sciences, research ethics, institutional capacity, Nigerian universities.

Akpabio E M & IEsikot I F  (2014): Social sciences and research ethics in developing countries: The perspective from Nigeria, African Journal of Science, Technology, Innovation and Development, 6(4)  231-241 DOI: 10.1080/20421338.2014.902562
Publisher: http://www.tandfonline.com/doi/abs/10.1080/20421338.2014.902562

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