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

Overview on health research ethics in Egypt and North Africa (Papers: Diaa Marzouk 2014)0

Posted by Admin in on May 27, 2016
 

Abstract: Developing countries, including Egypt and North African countries, need to improve their quality of research by enhancing international cooperation and exchanges of scientific information, as well as competing for obtaining international funds to support research activities. Research must comply with laws and other requirements for research that involves human subjects. The purpose of this article is to overview the status of health research ethics in Egypt and North African countries, with reference to other Middle Eastern countries. The EU and North African Migrants: Health and Health Systems project (EUNAM) has supported the revision of the status of health research ethics in Egypt and North African countries, by holding meetings and discussions to collect information about research ethics committees in Egypt, and revising the structure and guidelines of the committees, as well as reviewing the literature concerning ethics activities in the concerned countries. This overview has revealed that noticeable efforts have been made to regulate research ethics in certain countries in the Middle East. This can be seen in the new regulations, which contain the majority of protections mentioned in the international guidelines related to research ethics. For most of the internationally registered research ethics committees in North African countries, the composition and functionality reflect the international guidelines. There is growing awareness of research ethics in these countries, which extends to teaching efforts to undergraduate and postgraduate medical students.

Marzouk D, Abd El Aa W, Saleh A, Sleem H, Khyatti M, Mazini L, Hemminki K, Anwar WA (2014) Overview on health research ethics in Egypt and North Africa. European Journal of Public Health. Vol. 24, Supplement 1, 87–91. doi: 10.1093/eurpub/cku110.
Publisher (Open Access): http://eurpub.oxfordjournals.org/content/24/suppl_1/87.long

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?

Qualitative research ethics on the spot: Not only on the desktop (Papers: Christine Øye et al 2015)0

Posted by Admin in on May 18, 2016
 

Abstract

BACKGROUND:
The increase in medical ethical regulations and bureaucracy handled by institutional review boards and healthcare institutions puts the researchers using qualitative methods in a challenging position.

METHOD:
Based on three different cases from three different research studies, the article explores and discusses research ethical dilemmas.

OBJECTIVES AND ETHICAL CONSIDERATIONS:
First, and especially, the article addresses the challenges for gatekeepers who influence the informant’s decisions to participate in research. Second, the article addresses the challenges in following research ethical guidelines related to informed consent and doing no harm. Third, the article argues for the importance of having research ethical guidelines and review boards to question and discuss the possible ethical dilemmas that occur in qualitative research.

DISCUSSION AND CONCLUSION:
Research ethics must be understood in qualitative research as relational, situational, and emerging. That is, that focus on ethical issues and dilemmas has to be paid attention on the spot and not only at the desktop.

KEYWORDS:
Do no harm; gatekeeper; informed consent; qualitative research; relational and situational ethics; research ethics

Øye C, Sørensen NØ, Glasdam S (2015) Qualitative research ethics on the spot: Not only on the desktop. Nursing Ethics 0969733014567023, first published on February 9, 2015
Publisher (Electronic pre publication version): http://nej.sagepub.com/content/early/2015/01/28/0969733014567023.long

Deception of children in research (Papers: Merle Spriggs & Lynn Gillam 2013)0

Posted by Admin in on May 15, 2016
 

Abstract: The aim of this article is to draw attention to an under-recognised but ethically important phenomenon involving the deception of children in research. The type of deception we are referring to is not planned deception that is part of the research design. Instead it is deception that occurs in individual cases where parents ask researchers not to reveal something about the research to their child. Our focus is children who do not have ultimate decisional authority—children around the ages of 7–14 years old who may have the cognitive capacity to understand but not to consent for themselves; children whose agreement is required but not sufficient to authorise research. We provide three illustrative scenarios for analysis. Then, we identify circumstances in which non-disclosure might be justified and set out reasons why providing information to non-competent children is ethically required. On this basis, we argue that non-planned deception requested by parents is very unlikely to be ethically acceptable. Finally, we recommend that guidelines should (a) require researchers to consider what to do if parents do not want to disclose information to a child and (b) clarify that the most ethical response is to simply not include that child in the research.

Spriggs, Merle, & Gillam, Lynn. (2015). Deception of children in research. Journal of Medical Ethics. 41:179–182
Publisher: http://jme.bmj.com/content/41/2/179.abstract?sid=ba242ba9-0a7e-44b0-b589-46a9f31e0b4c

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