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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Ethics, human rights and responsible innovation – The Ethics Blog (Josepine Fernow | October 2017)0

Posted by Admin in on November 3, 2017
 

It is difficult to predict the consequences of developing and using new technologies. We interact with smart devices and intelligent software on an almost daily basis. Some of us use prosthetics and implants to go about our business and most of us will likely live to see self-driving cars. In the meantime, Swedish research shows that petting robot cats looks promising in the care of patients with dementia. Genetic tests are cheaper than ever, and available to both patients and consumers. If you spit in a tube and mail it to a US company, they will tell you where your ancestors are from. Who knows? You could be part sub Saharan African, and part Scandinavian at the same time, and (likely) still be you.

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Holiday funny – Consent for future research use0

Posted by Admin in on October 31, 2017
 

Cartoon by Don Mayne www.researchcartoons.com

There are very sound reasons why it is prudent to seek consent for future use of blood (or other human biospecimens) and such consent must be sought for any commercial use, but it is important to recognise some potential participants might then refuse to participate because of that future use. One option is to provide a tick box so individuals can consent to the procedure but elect not to consent to the future use.

ScottisH Informatics Programme – SHIP0

Posted by Admin in on June 8, 2017
 

SHIP is a Scotland-wide research platform for collating, managing, disseminating and analysing Electronic Patient Records (EPRs). Cute but wonderfully clear animation about role of data custodians, indexers, safe havens in managing data ethically. Almost a case study on how to explain complex research well. And, it’s narrated by Brian Cox.

SHIP is an ambitious, Scotland-wide research platform for the collation, management, dissemination and analysis of Electronic Patient Records (EPRs). The programme brings together the Universities of Dundee, Edinburgh, Glasgow and St Andrews with the Information Services Division (ISD) of NHS Scotland.
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SHIP is funded by the Wellcome Trust, the Medical Research Council and the Economic and Social Research Council and aims to:
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  • Provide access to an exciting new national research facility, firmly embedded within and supported by NHS Scotland, providing the basis for numerous future studies using EPRs.
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Read more about SHIP

Traditional and Electronic Informed Consent for Biobanking: A Survey of U.S. Biobanks (Papers: Simon Christian, et al 2014)0

Posted by Admin in on March 5, 2017
 

Abstract:
Biobanks face unique challenges obtaining consent from biospecimen contributors. Electronic consent (e-consent) presents one option for streamlining the biobank consent process, and improving contributor understanding of consent information. An e-mail survey was conducted to establish the extent of current biobank e-consent and interest in future use of e-consent. A total of 235 biobanks were surveyed and 65 (28%) responded with a fully completed survey. Few of these 65 biobanks (8%) reported using e-consent; however, the majority (75%) were interested in e-consent. Many (48%) biobanks were in discussions with institutional stakeholders about using e-consent in the future. Anticipated benefits of e-consent included improved efficiency and increased enrollment. Perceived barriers to e-consent adoption included lack of funding, issues with human subjects approval, and factors affecting user uptake (e.g., computer literacy). Biobanks using e-consent reported cost, technology issues, and difficulty training staff as barriers to e-consent adoption. Traditional consenting methods (e.g., face-to-face, phone, and mail) continued to be used at biobanks reporting use of e-consent. The survey results suggest strong interest in e-consent among U.S. biobanks, and a need to consider a range of implementation issues, including user preferences and receptivity; institutional and technical support; integration with clinical data networks; electronic signature capture; and what type of e-consent to implement. Biobanks will need evidence-based guidance for purposes of addressing these issues, so that e-consent processes enhance efficiency, as well as contributor receptivity, understanding, and trust.

Simon Christian M, Klein David W, and Schartz Helen A (2014) Biopreservation and Biobanking. December 2014, 12(6): 423-429. doi:10.1089/bio.2014.0045
Publisher: http://online.liebertpub.com/doi/abs/10.1089/bio.2014.0045

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