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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Children, Biological Samples, and Broad Consent (Papers: Merle Spriggs 2015)0

Posted by Admin in on May 7, 2016
 

Abstract: Broad consent for the collection and use of biological samples in research may be ethically appropriate but when children are involved, things are different. Adults who donate their samples may lack detailed information about future research, but they can still give valid consent. They can choose ignorance in the interest of supporting valuable research. Alternatively, they can exercise their right to say no and not donate their sample. Children need someone else to make these decisions for them and arguably, when parents make these decisions for their children, the responsibility is greater than when they are making decisions for themselves.

Spriggs, M. & Fry, C. (2015). Children, biological samples and broad consent. American Journal of Bioethics. 15(9): 70-72
Publisher: http://www.tandfonline.com/doi/abs/10.1080/15265161.2015.1062173?journalCode=uajb20

Untangling research and practice: What Facebook’s “emotional contagion” study teaches us (Papers: Danah Boyd 2015)0

Posted by Admin in on May 5, 2016
 

Abstract: Published in 2014, the Facebook “emotional contagion” study prompted widespread discussions about the ethics of manipulating social media content. By and large, researchers focused on the lack of corporate institutional review boards and informed consent procedures, missing the crux of what upset people about both the study and Facebook’s underlying practices. This essay examines the reactions that unfolded, arguing the public’s growing discomfort with “big data” fueled the anger. To address these concerns, we need to start imagining a socio-technical approach to ethics that does not differentiate between corporate and research practices.

Keywords: Big data, Ethics, Facebook, Informed consent, IRB

Boyd D (2015) Untangling research and practice: What Facebook’s “emotional contagion” study teaches us. Research Ethics 12(1) 4-13
Publisher: http://rea.sagepub.com/content/12/1/4

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?

Should we tell children and young people about the positive experience of taking part in clinical trials? (Papers: Merle Spriggs 2015)0

Posted by Admin in on May 4, 2016
 

Abstract: Should we tell children and young people that they could gain personal benefit from taking part in clinical trials and that they have a moral duty to take part? Should we tell them that they may come to feel “special,” gain “more confidence,” deal more effectively with their disease, and have their lives enriched (Luchtenberg et al. 2015)? Luchtenberg and colleagues (2015) report on young people’s positive experiences of taking part in clinical trials and recommend that professionals give children and young people more information about how research participation“ can affect their life in a positive way” and more information about opportunities to take part. They report that children and young people, between the ages of 10 and 23 years, often feel a moral duty to participate, are often altruistic, and while they may take part in research in the hope of improving their health, they are not necessarily under the “therapeutic misconception.”

Spriggs, M. (2015). Should we tell children and young people about the positive experience of taking part in clinical trials? American Journal of Bioethics. 15(11): 35-36
Publisher: http://www.tandfonline.com/doi/abs/10.1080/15265161.2015.1088976?journalCode=uajb20

To disclose, or not to disclose? Context matters (Papers: Vasiliki Rahimzadeh, et al 2014)0

Posted by Admin in on May 1, 2016
 

Abstract: Progress in understanding childhood disease using next-generation sequencing (NGS) portends vast improvements in the nature and quality of patient care. However, ethical questions surrounding the disclosure of incidental findings (IFs) persist, as NGS and other novel genomic technologies become the preferred tool for clinical genetic testing. Thus, the need for comprehensive management plans and multidisciplinary discussion on the return of IFs in pediatric research has never been more immediate. The aim of this study is to explore the views of investigators concerning the return of IFs in the pediatric oncology research context. Our findings reveal at least four contextual themes underlying the ethics of when, and how, IFs could be disclosed to participants and their families: clinical significance of the result, respect for individual, scope of professional responsibilities, and implications for the healthcare/research system. Moreover, the study proposes two action items toward anticipatory governance of IF in genetic research with children. The need to recognize the multiplicity of contextual factors in determining IF disclosure practices, particularly as NGS increasingly becomes a centerpiece in genetic research broadly, is heightened when children are involved. Sober thought should be given to the possibility of discovering IF, and to proactive discussions about disclosure considering the realities of young participants, their families, and the investigators who recruit them.

Rahimzadeh V, Avard1 D, S’ne´cal K, Knoppers BM and Sinnett D. To disclose, or not to disclose? Context matters. European Journal of Human Genetics (2015) 23, 279–284
Publisher (open access): http://www.nature.com/ejhg/journal/v23/n3/pdf/ejhg2014108a.pdf

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