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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Is it too Late for Big Data Ethics? – Forbes (Kaslev Leetaru | October 2017)0

Posted by Admin in on November 1, 2017

Over the past few weeks my inbox has seen a steady stream of emails on the topic of big data and AI research ethics. From the NSF-funded PERVADE study to industry initiatives to roundtables and discussions at the Association of Internet Researchers annual meeting in Tartu, Estonia this week, it would seem data ethics has hit its stride. Yet, should we have hope that there will actually be change, or is it just too late for big data ethics?

As I’ve written again and again and again and again and again on these pages, the tide in the world of big data and AI research seems to have turned decidedly against the notion of outside ethical review. Instead of asking what questions we should be asking that would better human society, data scientists today all-too-often ask what questions are possible with the data and tools at hand and especially what questions would generate the most attention (and hence publication prestige and grant funding).

Even while academia publicly promotes a narrative of soul searching and a return to focusing on what data scientists should do, rather than what they can do, the reality is little changed. Studies generate public outrage and statements of editorial concern, only for the journal and university to turn around after things have quieted down and say they would do little differently. Professional societies that have become synonymous with extensive full IRB review and informed consent welcome into their own journal papers that have neither. Prominent researchers tout…

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Is it time to bring a big data/computer science person* into the membership of Human Research Ethics Committees now irrespective of whether it’s a requirement of the national arrangements? Hint: We think we should be talking about it at a committee level AND at the national level. The topic isn’t necessarily pervading all disciplines… YET… but work being undertaken by government-funded-institutions NOW appears to beginning to touch on research ethics matters in a way that should be informed by ethical thinking and reviewed by a research ethics committee. *Even if that person isn’t conversant in ethics and big data or ethics in computer science. Perhaps it’s precisely the fact they don’t already have that knowledge is why it might be useful to bring them into a committee.

Holiday funny – Consent for future research use0

Posted by Admin in on October 31, 2017

Cartoon by Don Mayne

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.

ICV Guidelines for Muslim Community-University Research Partnerships0

Posted by Admin in on October 26, 2017


The principles and practices described here are intended to educate, inform and facilitate respectful, collaborative and beneficial research relationships between the Victorian Muslim Community and the wider university research community. It is also a statement of principles to guide these relationships towards an ideal. It is not a formal policy.

As the peak community organisation for over 200,000 Muslim Victorians, the ICV has been a ‘community-partner’ or ‘participant’ in many Muslim-focused research projects over its 42-year history…

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NSPCC Research Ethics Committee: Guidance for applicants0

Posted by Admin in on October 3, 2017

Guidance and standards document produced by the National Society for the Prevention of Cruelty to Children (NSPCC).

The aim of the NSPCC ethical review process is to provide a thorough, impartial examination of the ethical issues in a collaborative, pragmatic and proportionate way. In formal terms, the NSPCC research ethics committee (NSPCC REC) is an advisory body with an external chair and a majority of external members, which makes recommendations to the organisation, with the ultimate decision and responsibly resting with Director of Strategy, Policy and Evidence, as the representative of the senior management team and of the trustees. In practice, applicants are expected to follow the NSPCC REC’s recommendations and to work with the NSPCC REC to adapt proposals so that they satisfy the committee that they are in accordance with the principles set out in the GSRU and ESRC frameworks. In extremis, where an applicant and the NSPCC REC cannot agree, a decision about whether the research can proceed and on what basis will be taken by the Director of Strategy, Policy and Evidence. However, before this can happen, the Director must be satisfied that all possible ways of finding an agreed way forward have been exhausted. Applicants should also remember that ultimate responsibility for studies being conducted in an ethical way rests solely with individual researchers and their managers.”

Access the NSPCC guidance document